All About Audiology - Hearing Resources to Empower YOU

By Lilach Saperstein

Hearing Resources to Empower YOU

  1. 1.
    All About Collaborating with Speech Language Pathologists – Episode 74- with Dr. Leah Beekman
    43:20
  2. 2.
    All The Things You Didn’t Learn in Your AUD Program – Episode 73- with Mallorie Evans
    52:13
  3. 3.
    All About Listening and Spoken Language – Episode 72 with Dr. Carol Flexer
    41:40
  4. 4.
    All About Universal Design and Disability Advocacy – Episode 71 with Becky Hales
    40:45
  5. 5.
    All About Supporting Parents – Episode 70 with Dr. Michelle Hu
    41:22
  6. 6.
    Children’s Books, Literature and Representation – Episode 69 with Katie Petruzziello
    23:37
  7. 7.
    Auditory Processing Disorder (APD), All About YOU – Episode 68 with Juliana Pedri
    29:27
  8. 8.
    All About Enlarged Vestibular Aqueducts (EVA) – Episode 67 with Dr. Laura Pratesi
    33:15
  1. 9.
    All About Supporting Your Child Unconditionally – Episode 66 – with Takniyan Debbie Dachi
    34:28
  2. 10.
    All about YOU: Genetic Hearing Loss Life Experience” – Episode 65 with Olivia Rains
    51:18
  3. 11.
    All About The AUD Student Experience – Episode 64 – with Ina Selita
    41:51
  4. 12.
    All About Educational & Informational Audiological Counseling – Episode 63 – with Dr. Sarah Sparks
    49:29
  5. 13.
    All About The Parent Journey – Episode 62 – with Liba Lurie
    51:47
  6. 14.
    All About the Importance of the Parent-Audiologist Relationship – Episode 61 with Janet DesGeorges
    58:57
  7. 15.
    All About Online Safety- Episode 60 with Lisa Honold
    53:53
  8. 16.
    All About Advocacy Organizations – Episode 59 with Oren Dvoskin and Damien Kelman, Bekol
    42:27
  9. 17.
    All About Tinnitus via Telehealth – Episode 58 with Dr. Ben Thompson
    39:19
  10. 18.
    All About Educational Audiology – Episode 57 with Dr. Tina Childress
    1:01:03
  11. 19.
    Episode 56 – All About Early Intervention: Speech and Language Development
    28:13
  12. 20.
    No Dumb Questions! Episode 55 with Dr. Yona Saperstein
    45:48
  13. 21.
    All About Healing Tinnitus- Episode 54 with Joey Remenyi
    55:07
  14. 22.
    All About Mindfulness -Episode 53 with Margo Helman
    32:25
  15. 23.
    All About ASL at Home – Book Club! Episode 52 with Dr. Leah Zarchy and Razi Zarchy
    45:01
  16. 24.
    All About Believing in Your Child- Episode 51 with Chaya Klughaupt
    42:21
  17. 25.
    All About Therapy w/ Family Physician Dr. Yona Saperstein- Episode 50 – Season 4 Wrap-Up
    29:34
  18. 26.
    All About Reverse-Slope Hearing Loss- Episode 49 with Natalia Popham
    38:27
  19. 27.
    All About Unilateral Hearing Loss-Episode 48 with Jacquelyn Briggs- All About You
    41:18
  20. 28.
    Journey to AuD- overcoming obstacles- Episode 47 with Dr. Saunja Burt
    39:10
  21. 29.
    All About Resilience & Rubella – Episode 46 with Courtenay Turner
    38:02
  22. 30.
    All About Auditory Processing Disorder & Sound Sensitivities -Episode 45 with Dr. Melissa Karp
    41:57
  23. 31.
    August 2020 Moms’ Support Group: All About You- Episode 44
    11:56
  24. 32.
    All About Creating A Vision For Your Child’s Life -Episode 43 with Genia Stephen
    52:06
  25. 33.
    Episode 42 – All About YOU! Office Hours starting July 1, 2020
    15:40
  26. 34.
    All About Deaf Plus and Rare Disorders – Episode 41 with Madeline Cheney
    53:04
  27. 35.
    All About Teletherapy- Episode 40 – Season 3 wrap-up with Stacy Crouse, SLP
    38:34
  28. 36.
    All About Balance – Episode 39 with Michelle Riddle
    33:07
  29. 37.
    All About You- Episode 38
    9:18
  30. 38.
    All About Trauma-Informed Practice – Episode 37 with Colleen Wilkinson
    54:20
  31. 39.
    All About YOU! – Episode 36
    11:40
  32. 40.
    All About Tinnitus- Episode 35 with Dr. Kelly Dyson
    54:17
  33. 41.
    Talk to your kids about Covid 19, with Amanda Mc Guinness @theautismeducator – All About YOU! Episode 34
    17:23
  34. 42.
    All About Equipment- Episode 33 with Dr. Julie Renshaw
    31:52
  35. 43.
    All About YOU! Episode 32
    12:02
  36. 44.
    All About Connecting – Episode 31 with MamaManon
    43:09
  37. 45.
    All About YOU! Episode 30- Season 2 Wrap-Up
    18:40
  38. 46.
    All About “Parent’s Intuition”- Episode 29 with Avivah Werner
    50:24
  39. 47.
    All About YOU! Episode 28 Benefits and Limitations of Hearing Aids + SPEAK UP!
    13:54
  40. 48.
    All About Auditory-Verbal Therapy- Episode 27 with Elaine Matlow Tal-El, AV Israel
    48:45
  41. 49.
    All About YOU! Episode 26 with Dr. Samantha McKinney
    44:02
  42. 50.
    Do Cochlear Implants Work? Episode 25 with Dr. Lindsay Cockburn
    49:26

Listen to All About Audiology - Hearing Resources to Empower YOU now.

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Mentioned In this episode: Juliana who talks about APD

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All About YOU! Episode 26 with Dr. Samantha McKinney

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All About Unilateral Hearing Loss-Episode 48 with Jacquelyn Briggs- All About You

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Listen Next/Related Episodes

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Ep 68: Auditory Processing Disorder (APD), All About YOU with Juliana Pedri

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Transcript:

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Welcome back to the All About Audiology podcast. I am your host, Dr. Lilach Saperstein. And this is the show where we talk about audiology and how it impacts your life, more than just X’s and O’s on audiograms and hearing AIDS. But what does it actually mean when you have an encounter with an audiologist, when your child has a hearing loss, when you’re going through this process. So, that is what we do here on the show.

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And I am joined today by Dr. Laura Pratesi from the Citrus Hearing Clinic in Clermont, Florida. She is an audiologist and she’s going to share what it’s like to be an audiologist also with experience on the other side of the audiology booth as a patient.

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Dr. Lilach Saperstein: “So, welcome Dr. Laura, how are you?”

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Dr. Laura Pratesi: “Thank you. I’m so excited to be here.”

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LS: “Again. Should we tell them? We had a little recording snafu about a year ago and it was like whoops. So, that audio is no longer available so, amen for second chances. So, thank you for coming again to the show.”

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LP: “I’m very happy to be back.”

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LS: “Awesome. So, the last time we spoke was last February and it was like, Oh, a pandemic is maybe coming or not. Or it was like maybe the second week of lockdown and everyone was still into Zoom. Haha.”

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LP: “Life looks very different now than it did then, for sure.”

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LS: “Yeah. So, I’m sure that is coming into play, obviously with the infection control precautions and like closures, lockdowns, et cetera. So, how has that affected your practice this year?”

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LP: “Oh gosh, it was hard. Our governor of our state mandated that non-essential healthcare practices be closed down. So, we were closed by executive order from March until May of 2020. And when we did open back up, we were very slow. We were very like spacing appointments apart and really taking the time to make sure we were cleaning everything in between.

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We just didn’t know a lot about COVID at the time. And thankfully, now we kind of got a handle on it. We’re faster with knowing what we’ve got to do and when, and we’re still kind of doing curbside cleaning checks or remote programming where we can. There’s just so many things in audiology that require in-person care, like getting ear wax out of ears. You can’t do that over Zoom. So, it’s been interesting for sure. But thankfully I have managed to get my two vaccines. So, we’re hopefully coming to the light at the end of the tunnel.”

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LS: “That’s wonderful. I just keep thinking about the tens of thousands of dollars worth of equipment, soundproof room, computers, like all the things. And then it’s just like, well, I guess we don’t need any of this. Like, Hmm. Hahaha.”I

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LP: “It was a good push to get me more comfortable with some of the remote programming features with some of the manufacturers, which it’s been out there for a little bit of time. It’s not without bugs though. And sometimes it’s dependent on the patient having stable internet connection or understanding on their end how to get logged in through the app to pull up the programming screen or how to accept the changes that come through. So, there’s definitely been some manufacturers that I think that their remote programming works a little bit better than others, but yeah, we’ve been figuring it out.”

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LS: “Yeah. Again, just even in-person, in-clinic programming is always a bunch of tangled wires or like the remote, even when it’s Bluetooth. Is that connecting? Yes connecting, not connecting. Jiggle wires… Anyway, that’s what many people have experienced this year. And thank you for, you know, sticking it out and care for all the patients that rely on you.

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So, let’s back up a little and you know, I feel like I already know you, but the audience needs to get to know Dr. Laura. So, tell us a little about yourself, your background, why you got into audiology, basically anything you want to share.”

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LP: “So, I was born with a hearing loss and it was identified when I was five years old. This was kind of before the universal newborn hearing screening programs existed. So, I slipped through the cracks there a little bit, but my preschool was having hearing screenings prior to us all going into kindergarten. And my mom was concerned, my mom had her master’s in early childhood education and she just knew. Her gut instinct was like, something was just not quite right. And she couldn’t really get the pediatrician to take her seriously. You know, they did the “snap snap”. ‘Oh, look, she looked, she’s fine.’ And so, when they let her know, hey, we’re doing vision screenings and hearing screenings at the preschool where she got me registered and that’s what I failed. So, that was finally her hard proof that she was like, ‘No, look, we need to get this taken care of.’

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And she picked up on things like, (she would say to) hold the phone, I would hold it to my left ear and I wouldn’t respond. And then I’d stick it in my right hand and then I would act like I was hearing. So, she just always kind of felt like something wasn’t quite right. My speech wasn’t quite there, but yeah.”

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LS: “So, your mom was noticing that your speech was a little different than it should have been perhaps at that age?”

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LP: “Yes. And she worked with me and I had one good ear, so I ended up not having to go through speech therapy. I was very lucky in that respect, I guess. But she just knew something wasn’t right. And I failed this test and I finally got the referral to an ENT and we went to one. I didn’t even realize this until after the last time that you and I talked. And then I talked with my mom and said, hey I was on this podcast, and she was like, well, you actually saw two ENTs. I was like, I did? So, yes. That’s when we saw one ENT and she was like, ‘Oh, we’re just going to put tubes in.’ And my mom was like, ‘Is there fluid?’ And she’s like, ‘No.’ And mom’s like, ‘All right, then why?’ So, she was like, okay, not going there. Then I’ll go somewhere else.”

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LS: “Go mom, go! Yeah. Okay. Don’t do things you said that are not medically indicated even if the doctor says them. Okay.”

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LP: “So, she took me to the second ENT, he at least orders like a CT scan. So, you know, they do a CT scan and then it just comes back with like, ‘Well, God just made her that way.’ Like that’s not a diagnosis but okay.

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He was like, ‘It was just a traumatic birth and that’s what caused it.’ And that was kind of the only explanation that we got. But from the time I was five, until I was eight, they brought me back for annual monitoring, being tested every year, but I have a mild to severe loss in my left ear. And my mom’s like, does she need a hearing aid? And he’s like, nah, as long as she’s making A’s and B’s, she’s all good.”

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LS: “What?”

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LP: “And it’s just going to make the paper crinkling in the classroom, loud. It’s just going to distract her.”

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LS: “So, let me just ask you, do you think, you know, speaking of age and millennials, et cetera, do you really think that things were that different in the level of technology at the time? Or was it the level of awareness, understanding? There’s a lot of factors there.”

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LP: “I think that in the early nineties, they had the research that showed that most of the unilateral hearing loss kids did okay with speech development. So, they weren’t concerned. And I think that now we have more research that shows, okay, yeah. But they’re very likely to fail one grade, if not two. And that even a mild hearing loss is a big deal if it means that you’re not getting a hundred percent of access to sound on the audiogram. So, I mean, yeah, it was analog technology, but like digital was still a decade or so away.

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There’s no reason why I could not have benefited from tech back then. They did me a disservice, but they did the best that they could with the information that they had at the time, or at least that’s what I tell myself anyway. And I definitely see that a lot of ENTs are much more proactive nowadays, thankfully.”

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LS: “Yeah. And also the element of fatigue. I think that’s much more addressed now. It’s harder to listen.”

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LP: “Mental load, for sure. When I got into grad school and I was reading the textbook on “these are all the things that kids with hearing loss have”. I was like, okay, are you reading my diary? Because I had all of those things.”

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LS: “Yeah. I talk a lot to parents about the social implications and how we do so much for our kids to be friendly and make friends and be respectful and all the things we want for them, polite, at a level of just like interacting with other humans.”

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LP: “Well, okay. For example, in middle school at one point, we had assigned seats. And my assigned seat was at the far right into the table, which meant that my bad left ear was facing everyone. And rather than struggle all lunch period to try to talk or listen or whatever, I just started bringing a book. I mean, I love to read. I needed a mental break from like all the focusing I was doing in class and stuff. So, they called a parent teacher conference with my mom and told my mom that I was too antisocial because I was reading during lunch and my mom was like, ‘Are you seriously calling me in here to tell me that my kid reads too much? Like, is that really a thing?’ She was so mad.

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But now I realize that was my coping mechanism. That was how I got a little bit of a break from all of the paying attention in class that I had to do and stuff.”

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LS: “When you talk about that, it makes me think that children are so incredibly resilient and they’re always doing something for a reason. I also talk about in my parenting classes and coaching and things about that children have a behavior for a purpose. They’re trying to get something or achieve something from doing that, whether it’s screaming and kicking and yelling, or whether it’s, you know, goody two-shoes-ing.”

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LP: “I found that with a lot of my pediatric and even teenage patients, a lot of times rejection of the devices comes from a place of seeking control. They feel out of control for some reason, out of control with their health. Or their life or what’s going on. And rejection of hearing AIDS is a way that they can kind of feel like they get control back by making their parents feel out of control. And if they’re feeling out of control, how can we make them feel like they are in charge of something.

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And so counseling, I’m constantly recommending seeing a therapist, going to counseling, because look, I’ve dealt with a lot of grief with my own hearing loss. Mine is progressive. And we found that out just about three, four years ago now. So, it was 2017.

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So, back up a bit. So, I was diagnosed with the loss. It was stable from the time when I was five, until I was about eight. And so when I was eight, the ENT kind of released me from their care. They were like, it’s staying stable, we haven’t seen a change. So, just call us if your grades get bad, I guess. So, I didn’t see an audiologist again until I was ready to go to college.

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And I had always made A’s and B’s in school. My mom was a teacher, but I was nervous about going to university and being in a class with 300 people and who knew what my assigned seat there would be. And I knew that in order to get accommodations, I needed to be registered with the school. And so, at the time it was called the students with disabilities department and now they call it the office of accessibility.

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I went to my students with disabilities department and I was like, hey, I got a hearing loss and I want that registered. And I want accommodations for my classes. And they were like, yeah, we’re going to need a hearing test that’s been performed in the last decade.”

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LS: “Yeah. Not when you were eight. That’s hilarious.

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Okay. But let me just ask you this. All throughout middle school and high school, were you aware? Did you kind of have an understanding of I have a hearing loss in this ear? You know, it wouldn’t be your responsibility as a child, but you didn’t ask, is there something that we do about this? Did you ever see a hearing aid or know that existed or any of that?”

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LP: “I didn’t know anyone with a hearing aid. I had never had the opportunity to listen to one when it never been recommended for me. I mean, like I said, the doctors told my parents, like, it’s just going to distract her. So, I just kind of thought. Well, I’m deaf in my left ear and there’s nothing they can do about that. So, this is just how my life is. And my mom taught me to advocate for myself and to stand up for myself and to tell the teacher, no, I’ve got to sit in the front of the class and no, I don’t want to sit next to the talker who’s going to distract me. And I didn’t have an IEP plan. I didn’t have like any kind of accommodations and it never even entered my brain that that was something I could ask for or do.

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All I can think of, oh my gosh, when it was mandated that I take a foreign language and I get into high school and I’m trying to take Spanish and we had just a boom box with cassette tapes and our tests were, we would listen to the cassette tapes and then have to like write out either what they said or respond to it in a foreign language. It was so hard and I never thought to be like, um, can we do this some other way because the cassette tape gives me no visual cues. It’s incredibly hard. I watched everything with closed captioning at home, but I never thought to ask the teacher like, Hey, could you put the captions on the screen? Or in a qualm. And I would only be like, Oh, I don’t know what they said. I mean, I can’t tell you how many times I read the wrong pages for homework, you know, 65 through whatever. And it’s like, no, it was 55.”

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LS: “How hard, how hard you had to work, how much effort you put in. How much overcompensating. I hear your exhaustion just from talking about it.”

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LP: “That’s how I explain it to my kiddos now is I’m like, okay, you’re playing basketball and all your friends are like, just running around and dunking and dribbling and passing and whatever. And when you have hearing loss untreated, it’s kind of like you’re wearing weights on your arms and on your legs and you’re on earth. And they’re on the moon. They’re on a different field than you. And you’re having to work that much harder to compete with them on the same level. And we wouldn’t do that to you in sports. Why do you want to do that in English class?”

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LS: “Yeah. And, oh my goodness, to take that metaphor even further. I hear sometimes people will say, it’s not fair. Why should they get an advantage? If you give this child like super jumper boots, then they’re going to jump higher than the other kids. Like I’ve literally heard people say that they shouldn’t get extra help. They shouldn’t get a crutch, which is my worst word ever. Like if someone breaks their leg, they need a crutch.”

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LP: “I would much rather not have a disability and not have accommodations. Like, uh you’re so right. I’m right there with you all the time.”

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LS: “So, then, you came to the university office, you got your hearing test and look at that, you were ready to kind of advocate for yourself at that point. Oh yeah. Gold stars. Haha.”

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LP: “So, I get tested and they’re like, wow. Oh my gosh, you have a ton of hearing loss. And, you know, have you ever thought about wearing a hearing aid? And I was like, well, I mean I hadn’t. But I’ve never listened to one. And they were like, do you want one? And so, I said, well, do I need one? And they’re like, probably not, you know, you’ve been doing well all this time, you’re fine. Don’t worry about it. And I’m like, okay.”

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LS: “NO!!!! When you made that, it was like panels on a comic strip and I’m like at the edge of my seat. Haha.”

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LP: “So, once again, I just walked out the door with my little form saying that I need preferential seating and I maybe need a note taker. And so, they let me leave again.”

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LS: “Oh man!”

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LP: “So, I started off with theater and opera. I mean, I had a theater scholarship to Auburn. I was a theater major. I was taking opera classes. I had this idea that I was going to be a Broadway star and that I was going to get my degree in music therapy so that I wouldn’t have to be a waitress on the weekends. I could do like music therapy and then being in the arts, but Auburn didn’t have a music therapy program, but they had speech therapy and they had audiology. And so, I was like, well, if I do my undergrad degree in like communication disorders, maybe I won’t have to take as many remedial classes to get my master’s as a music therapist. And so, that was kind of the plan.

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And so, I had to take audiology 101 and I got like a 100 in the class and I just loved it and I just connected with it. And that was my like, oh my gosh. There’s stuff we can do about hearing loss. And my professor was like, come to the dark side.”

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LS: “It’s audiology 101. That’s the one. Yes.”

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LP: “And my classmates ended up fitting me with my first hearing aid and it just changed my life. I burst into tears. It was such a huge difference. It was amazing, but we still didn’t know why I had the loss. I just knew I was born that way. And so, fast forward a few years down the road, I was working at this primary care doctor’s office and we were doing kind of like a team building exercise. And so, we went to this place called Sky zone, which has like trampolines, rock walls and all this indoor stuff. And I also have a heart condition, but I’ve got a pacemaker now and like it’s managed. But I never really did sports or anything as a kid because I had the heart thing and the hearing thing. I wear glasses. So, I was like, well, I’m an adult. I’ll just be careful.

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So, I go and jump on the trampoline. And when I get off 30 minutes later, I had vertigo. I had screaming tinnitus in my right ear and I could tell my hearing had dropped. So, I thought I’d caught a virus. I had seen a couple of sudden hearing loss cases in clinic, like the couple of weeks proceeding. So, I was like, I’ve picked up something from a patient. I know what’s going on. So, I immediately call my primary. I got him to call in some oral steroids. I made an appointment.

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I got in to see the ENT, like the next day. And these guys, I saw some otologist and they were just amazing and ordered a high resolution CT scan and doing transtympanic steroid shots in my ear. And they sit down and go over the films with me. And they were like, well you have a bilateral mondini malformation. And I was like, I don’t have Pendred Syndrome, you know? And they’re like, no, mondinis can occur on its own without being associated with Pendred Syndrome. But have you ever been tested for that? And I was like, no. I was like, I vaguely remember this back from diagnostics in grad school and either they had missed it or they had not really explained it very well to us because I had no idea.

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And so, one of my best friends, Dr. Sarah Curtis, from the Sounds Of Life Hearing Center in Ohio, she’s a rock star and my best friend. I called her right after I got off the trampoline and said, something’s wrong. And she’s like, girl, you’re going to have EVA. You’re going to have an enlarged vestibular aqueduct. I just know it. Darn it if she wasn’t right. You know, so, she’s the one who figured it out and then these guys just confirmed it. But yeah, Tampa Bay Hearing Balance, I can’t say enough good things about them. They’re just fantastic otologists. And so, they finally, after 25 years and three different states and I don’t know, three, four or five different ENTs finally got my differential diagnoses. And so, I am just so passionate about not only identifying children with hearing loss, but identifying why they have the hearing loss.

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Because if I hadn’t known that I had a form of EVA, I would never have gotten on the trampoline. I had normal otoacoustic emissions out of 15,000 hertz. I had beautiful, rich, high-frequency hearing. And after I got off that trampoline, I lost everything above 3000. If you look at my audiogram, my right ear, most people are going to dismiss it. They’re going to be like, you got a precipitously sloping, high-frequency loss at like six and eight. It’s mild at three and four. It does fluctuate. And they’re gonna be like, we don’t even aid that.”

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LS: “And you had a CT as a kid. So, this wasn’t picked up until then?”

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LP: “No. If I don’t wear my aid in that ear, I can’t hear the “S” sound. It was so distorted, so different. I mean, the fact that it was there and it was gone, I grieved. That was really hard for me. I was still very involved in community theater and church choir and all that stuff and music, everything sounded different. I suddenly couldn’t hear in restaurants or anywhere where there was any kind of competing noises and stuff.

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I will never take a high-frequency loss for granted again. If someone comes in with a high-frequency loss and they’re like, I can’t hear, I’m not just going to blow it off and be like, it’s mild. We can’t do anything. No, I’m going to do speech and noise testing and I’m gonna figure out what I can do to help them because it was hard. I went through depression afterwards. I was in the middle of a play and I got through it, but it was so hard.”

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LS: “Gosh, talk about a challenging acoustic environment, haha.”

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LP: “I was having to relearn how to sing my songs without being able to hear the same musical cues. It was so tough. So, I went to counseling and that really helped me to talk it out, to get over my grief over the fact that my body is not working the way I want it to work. It’s permanent. You know, it really helped me to reframe it, to kind of get a positive outlook. And I don’t think that you have to have hearing loss to be a good audiologist, but I know that these experiences have made me a better one because I get it. I’ve been, like you said, on that other side of the sound booth, Just as much as I’ve been in the shoes of the professional. And I just connect with my patients in a way that school can’t teach you. I mean, it’s my truth. It’s what I live every single day.

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And so, the plus side of this is that it’s given me kind of a way to test things as they come out. I’m like, oh, there’s something new. Well, let me give that a shot. So, I take things for a test drive before I start doling it out to patients.”

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LS: “Okay. I just have one question there about the timeline. The first time you had the hearing aid from your friends at school, so you just got for the left ear. And then what happened was you lost the hearing in the right ear after the trampoline thing?”

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LP: “Yes. Yeah. So, they fit me with my first aid in 2008, because at the time I had totally normal hearing in my right ear. And I had like mild to borderline severe. Maybe it was moderately severe in the high frequencies in my left ear only. And so I was wearing a CIC (completely-in-the-canal hearing aid) in my left ear. And then the trampoline incident was in like 2017. And after that, my left ear went to moderate to profound. And my right ear went from normal to moderately severe. It fluctuates. So, like some days my left ear is not profound and some days it is, and my word recognition scores fluctuate. So, sometimes my speech understanding is 92%. Sometimes, it’s 82%.

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That’s the challenge with EVA. I’ve got the enlarged vestibular aqueduct, and then I’ve got the incomplete cochlear partitioning. So, the cochlea is supposed to be two and a half rotations. Mine’s only one. And then my vestibular aqueduct is too big. And so, it creates this like phantom conductive component. And it’s just very, very weird.

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So, after the trampoline, my CIC wasn’t powerful enough for my left ear anymore. And I tried wearing a custom in the right and it just plugged me up way too much. So I ended up switching to RIC devices (Receiver-in-the-canal) with just a very open fit on the right side. And a custom mold on seashell embedded receiver or whatever on the left. And that was when I got streaming and Bluetooth for the first time. And I probably didn’t use it for the first like three months. Cause I was like, I’ve never had this, whatever. And then I started playing with it and I was like, oh my gosh, I love having an app, but I love having podcasts and the books on tape. So, now I use it every day and I love that.”

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LS: “Books on tape. Audiobooks. Haha. I’m so grateful that you graced us with your story. Really, I feel that people should hear this and people should know a few lessons that I’m taking away. One, there’s no such thing as a mild hearing loss or high frequency hearing loss that’s like, eh, whatever. Any difference in hearing levels probably has some impact on the person, whether it’s fatigue or noisy environments, or it just makes hearing more challenging and for children even more so. That’s one thing.

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The other thing is this feeling that things can change. This reality, that things can change. That the hearing that is now might stay the same, or it might not. And that can happen even to anyone who has never had any hearing problems at all with age, with accidents, with all sorts of things.

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We actually had an episode with Jacquelyn Briggs who shared her story. She had a car accident, typical and normal hearing, and then she had a car accident. Now she uses a cochlear implant and she shared her story.

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You’re also reminding me of Dr. Samantha McKinney, an audiologist who’s also a cochlear implant recipient, and an audiologist. All the different people in our community who’ve been interviewed here, I think the stories are so, so important, especially for parents who want to know how do I help? What do I do?

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So, what is some advice you have for the parents listening?”

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LP: “You get that differential diagnoses. Find out why you have the loss. It might not ultimately change what we do day to day. It might not ultimately change like the recommended treatment, but get the genetic tests done. Do it, get that imaging study done, do it because it just gives you more information to figure out that roadmap. I would not have jumped on the trampoline if I had known that that was going to cause my hearing to drop more. And I’m not suggesting that we make kids live in a bubble. They gotta be kids. They got to live, but it’s about, I didn’t make an informed decision. Right? It’s about knowing that this is the risk I take. And so if I do this, this could happen.

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So, I think that really seeking out those answers and not just accepting, well, this is the way it is. I mean, I think that that’s super important.

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And then, you know, if kids are having a hard time accepting their diagnosis, get them counseling. Let them talk to someone. There are counselors that specialize in paeds. There’s counselors that specialize in working with people who are having a hard time accepting a medical diagnosis. It was very hard for me to accept. And of course they told me like, hey, you’re one concussion away from being a cochlear implant recipient. Most kids that have EVA are going to end up with cochlear implants. It’s amazing you made it to 30 without needing a CI (cochlear implant) and I’m like, I don’t feel lucky. But sometimes when you feel out of control, then you try to control what you can, whether that’s wearing your hearing aid, whether that’s controlling what you eat, those kinds of behaviors.

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So, I just think that if kids are rejecting their devices, it sometimes is just an indication that there’s something internal that they are feeling out of control with. And if you can help them give them their power back, if you can help them feel in control of their life and their situation again, then acceptance with their devices will be better. And I mean, I’m not a counselor, that’s not my area of expertise. I’m an audiologist, but that was my personal experience. And after that, it was really just this light bulb going off that was like, oh, okay. It’s about control. And so, let’s help them to feel more in control of their situation so that we can see the behaviors that we want to see and the successes that we want them to have.”

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LS: “That’s incredible. I’m thinking about what you said for parents that they should consider trying to get answers about the why and the diagnosis and that for many parents, it’s really overwhelming. There’s a lot happening in those first weeks and months, that that question sometimes gets moved forward. And I think that’s appropriate. You know, I don’t think it’s the same weight as what the interventions are, but that it shouldn’t just be left totally to sit in a back drawer. Like it should come back out a couple months later and then maybe consider.”

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LP: “I know with my own mother, like after I got my first hearing aid, she felt so guilty. She was like, Oh my gosh, why didn’t I get this for you years ago? I mean, she was following the advice of the experts. They didn’t give great advice, but they gave her whatever the best advice at the time was. So, I try to remind people to just love your kids. Just be there for your kids. Like they’re still the same kid today that they were yesterday. This is something that is a challenge. We’re going to work on it, but they still are who they were before. Right? Nothing’s changed, just we got a few more challenges that we got to face.

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But yeah, it’s so much, it was so much going through it as an adult. And I’m like, Oh, I got a sudden sensorineural hearing loss. I’m an audiologist. I know exactly what to do with that. That was the blessing and the curse. I knew exactly what my chances of my hearing coming back were. And I knew what we could do about it. So, I’m like, if you give me that treatment, you know… But I also knew the likelihood that it’s a 33% chance. Knowledge is a good thing. Knowledge is power.”

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LS: “Definitely. I think also, specifically when there’s a syndromic hearing loss and other parts of the body are affected, specifically ushers, which is also vision. So, that’s one that when there’s awareness of that, intervention is very different because we know that there’s going to be progression of both the hearing loss and the vision as the child grows.”

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LP: “Right. There wasn’t any obvious syndromes. So, it was just non syndromic hearing loss. Like why is this happening? As it turns out, interestingly, my grandmother, my dad’s mom was diagnosed with otosclerosis in the 1960s and she underwent a failed stapedectomy. And of course, EVA is very, very, very commonly misdiagnosed as otosclerosis. Didn’t have high resolution CT scans in the sixties. So, EVA, it can be just a fluke birth effect or it could be genetic inheritance. So, now I’m suspecting that this is actually an inherited thing from my dad’s side of the family.”

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LS: “Now I feel like we’re on a true crime podcast, investigating old cold cases from the sixties. Haha.”

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LP: “I know. Forensic Audiology, right?!”

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LS: “Yes. For sure. Oh my gosh. That’s fascinating. Yeah. I’m so, so, so glad to talk to you again, and I know our conversation in some parts is like very audiology, techie and all these different words, but I think still very valuable, first of all, for our students and for our colleagues who listen, but parents are in my heart. The whole mission of the podcast is to help parents know that they’re not alone with what’s going on for their family. And there’s a lot of support out there. So, reach out.

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If people want to reach you, where can they find you?”

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LP: “They can find me on my website, citrushearing.com. I’m also on Facebook, citrus hearing clinic, LLC. We have a citrus hearing clinic Instagram. I think my Twitter handle is citrus clinic aud on LinkedIn. So, I’m around, you can find me. My last name is pretty unique.”

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LS: “Yes. And I have lemons on your mask, your custom mask here.”

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LP: “We’re all citrusy here. We’re from the citrus belt here in Florida. We’re very close to the citrus tower. And so, it’s all oranges and lemons and limes, and I’m in the grapefruit room right now. So, you’ve got the pink walls. I’ve got my Auburn orange room. That’s my orange room where my booth is.”

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LS: “That’s so awesome that you need to name this room, the pumpla moose room though. Let’s make it fancy. Haha. Thank you so much for coming onto the show. I’m so grateful to you for sharing your story.”

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And for all the listeners, please come and say hi, your biggest takeaways or any questions on Instagram @allaboutaudiologypodcast. I will see you in the next episode. I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post All About Enlarged Vestibular Aqueducts (EVA) – Episode 67 with Dr. Laura Pratesi appeared first on All About Audiology.

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Read the full transcript here

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Takniyan Debbie Dachi, who currently resides in Nigeria, is one of the best examples of turning lemons into lemonade. Takniyan’s 13 year old son, Ezra, was diagnosed with a profound hearing loss at age 3. In fact, she never met someone with hearing loss till her son received his diagnosis. Takniyan has faced many challenges and has been inspired in supporting her son with his experiences that she created her own organization, The Rise Project, which supports young individuals with hearing loss in Nigeria.

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3:00: Around 13 months Ezra was not reading or using key sounds. Takniyan reached out to a Speech and Language therapist who conducted a home visit. This therapist found it strange that Ezra did not react when the TV was turned off and this was an initial sign that something was wrong. 

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6:00: Once diagnosed, Ezra was placed in a deaf school. Although Takniyan initially placed him on the oral track, the school’s staff found that Ezra prefered communicating through Makaton, which is a gestural and visual form of sign language. As a hearing mother it was difficult not knowing what was best for Ezra and it is important to honor and validate a child’s experience as their own. 

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9:30: The cause of Ezra’s hearing loss has still not been discovered. Even though Ezra’s case has been tough on Takniyan’s family, they have developed a beautiful frame of mind and constantly encourage him. 

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11:30: There are some parallels with the story that Laura Prestasi shared in an upcoming episode. 

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12:30: Though she is of Nigerian heritage, Takniyan was born in London. In 2017, when she visited Ghana for a second time, she eventually decided to move to Nigeria. She was surprised that there was limited educational support in Nigeria that supported deaf and hard of hearing children and families and she felt that more needed to be done in her country of heritage.

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16:00: Due to seeing the lack of support, Takniyan founded The Rise Project. The mission includes advocating for deaf Nigerians and ensuring that deaf children are supported by both the educational institutions as well as through the family unit. There is a large focus on having fun and social development. They even offer sign language courses for parents whose child/ren have a hearing diagnosis.

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22:00: Takniyan also has two daughters. Both of her daughters realize the importance of communicating with Ezra through BSL (British Sign Language) in order to strengthen their sibling bonds. Parents should ensure that a deaf or hard of hearing child is part of the family community and is included in all aspects of their family life in order to be a validated member.

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22:25: It is crucial to remember to be inclusive and to find ways to include the deaf community especially through your platform and specific roles that you hold. Universal design is becoming more popular and should be implemented whenever possible. 

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31:00: Bonus voice notes that took place after the interview

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For more resources and research visit:

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@theriseprojectng

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theriseproject8@gmail.com

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Mentioned In this episode:

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Laura Prestasi, who will be a guest on an upcoming episode. Stay tuned!

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Listen Next/Related Episodes

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Ep: 67 All About Enlarged Vestibular Aqueducts (EVA) with Dr. Laura Pratesi

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Listen to other mothers share their stories:

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All About Cochlear Implants- Episode 17 with Valli Gideons 

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All About BAHA – with Abbi Perets Season 2: Episode 21

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All About Deaf Plus and Rare Disorders – Episode 41 with Madeline Cheney

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Key Takeaways:

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Transcript:

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“Whether you have a disability or not, whether you are hearing or not, we are all people. We all want to have fun. Children, especially, all want and deserve to have fun. And unfortunately, in Africa, there is this mentality, I would say generally, children are not exposed to fun…” – Takniyan Dachi

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and you all know that something very, very important to me on this podcast is to build connections and have an international conversation because that’s what we can do these days. It’s unbelievable the power of the internet, and podcasting and Instagram. So, I love talking to all of you from all over the world. And I am very excited to introduce you to today’s guest. Takniyan Dachi is the founder of The Rise Project and she is going to share her experience both as being a mom to a deaf son, and all the information, educational services and all the things that she’s doing for deaf children in Nigeria.

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Dr. Lilach Saperstein: “So, welcome Takniyan. Thank you for coming on this show.”

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Takniyan: “Thank you for having me. It’s a pleasure.”

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LS: “How’s your day going? How’s your week going? How has your year been?”

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TD: “So far, we thank God have no complaints. Today was an amazing day. I managed to get a lot of ticks off of my list.”

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LS: “That’s a great feeling. Congratulations for that. Nice!”

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TD: “Great day. Thank you. What about you?”

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LS: “Well, it’s quite late for me here in Israel. I think you are one hour behind me in Nigeria. But it’s the evening, long day, pretty tired, post bedtime. All is well. This is actually when I come alive in my podcasting time after putting aside my mom hat and turning on my podcast, educational audiology hat. Haha.”

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TD: “Yeah, awesome.”

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LS: “I would love to hear, first of all, about your son. How old is he and what has your journey been like with him? And then we’ll get to Rise.”

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TD: “Amazing. So, I have a 13 year old who has a profound hearing loss. He was actually born hearing. He was diagnosed at three years and eleven months. So, some time between birth and that time, he lost his hearing. I tried to navigate as a mother with a deaf son the best way that I could have done. Before having a deaf son, I had never been in contact with another deaf person. I don’t remember meeting anyone who was deaf before, so he literally changed my life.”

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LS: “Amazing. And I have to say, that piece right there, I know we talked about this in our chats, but the idea of hearing parents coming into a whole new world, whether it be their encounter with audiology or the deaf community and all of that happens all at once, like being in a new adventure and it’s not something that most people are eased into or have knowledge about. It’s just like boom and now you’re here. And you have all these decisions ahead of you. Was that kind of what it was like for you?”

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TD: “Kind of, although because it took so long with our experience. I knew that something wasn’t right. Around 13 months, he wasn’t using his sounds the way that I thought he should be. So, I actually reached out to a speech and language therapist. We were in London and we were fortunate enough to have the NHS. So, a speech and language therapist came and did a home visit. Everything was going well but I think it was towards the end of the assessment, someone turned up the TV and she thought it was strange that he didn’t react to either the sound turning off or turning on. So, she said she would refer us onto audiology.

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So, we were referred onto audiology and for a long time during assessments, he had something called glue ear, which I’m told you are familiar with. Initially, they were not diagnosing him as deaf because he was passing the ERAs and they had no qualm about what was going on.”

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LS: “So, just for our listeners, glue ear is what people in the UK call it, which I think is kind of an adorable way to put it. In the US, people call it ear infections, otitis media, basically fluid in the ears. Glue ear is a good way to describe all that guck and muck that goes from the nose up. That’s very common too, that people will say, it’s just ear infections. But we don’t know that. We don’t know what’s behind ear infections, or glue ear. That’s a very common experience.”

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TD: “Yeah. That’s exactly what we were being told. It was very common. And because he was passing all of his ERAs, there was no cause for concern. He was doing very well in school. He was quite hyper but apart from that, he was doing very well, especially withmath. So, we kind of went on with this battle for I guess, three years. So, when we finally got this diagnosis, I was happy because I wanted to move on. I wanted to know what kind of educational setting I would put him into. I’ve heard about parents with newly diagnosed children in different kind of stages. You almost kind of mourn the loss of the hearing. I guess I went through that a little bit. But I was just happy to move on. I wanted to know what to do next, how he would be educated and I guess I was supported really well by the local education authority.

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So, very quickly he was put into a deaf school. I was given the options of oral or sign. This was very interesting because as I said, I’m hearing and I’ve never met a deaf person before. So, I went with the option of an oral school and then all of the health practitioners and the people we were working with with the educational department, they were like, from what we can see, he is communicating using sign. He was already without ever being taught British Sign Language at that time. We were already using signs anyway. We had created our kind of way to communicate at home. So, apart from that, there is something called Makaton. So, I’m not sure if you use it in the states, in America, but in the UK, there’s something called Makaton. It’s used as a way to, um, enhance speech, I guess. And it’s not specifically for deaf people. Anyone can use it.”

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LS: “Makaton. Is it more of a gestural system?”

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TD: “Exactly. And it’s used for any child or adults, I guess, who have any type of learning disabilities. In the educational placement, they use that anyway for hearing children, deaf children.”

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LS: “So, it sounds to me like he was adapting quite naturally to using the more gestural and visual language.”

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TD: “Yeah. I think that’s the perfect way to sum it up. It was just totally natural for him. He enjoyed the transition. So, um, I think you summed it up best when you said that it was natural. So, it was a natural transition for him. But once again, being a hearing mother, I thought that other things will be better for him. Because he had a really late diagnosis, we were quickly advised to have cochlear implants, and that was done very quickly.

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But then in six months, he was implanted bilaterally. So, on both sides, he was implanted with cochlear implants and they weren’t very good for him in the sense that he was developing speech. So, he’s very oral. He loves using his voice and his sounds so it was very positive in that way. Often now people say funny comments like, ‘Oh, are you sure he’s deaf?’, because you can have a conversation with him and understand maybe 30% of what he’s saying, so we get that a lot.

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But in terms of the cochlear implants, they were not very consistent. So, I can’t remember which side, either on the left or the right, stopped working after maybe six months and then he was re-implanted and then the other side stopped working. So, it was just a very stressful period. I can’t even imagine how he felt. That whole time was very difficult for us. And it was that whole, what is best for the child? So, what does he want? What do we, as parents, feel is best for him? So, it was, it was very difficult. At the end, he hasn’t been using his cochlear implants for at least the past three years, I would say. And he’s had breaks. Even before the last break, it would break in between where he was not using his cochlear implants.”

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LS: “And at any point, did you get diagnostics on why? The kind of reason of what happened to the hearing?”

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TD: “There’s a company called Med-El. They sent it back and they kind of did all the diagnostic work but they couldn’t work out what was going on or the cause of it. So, it was left unanswered, pretty much like the cause of his hearing loss. We still don’t know why he’s deaf or why he lost his hearing. Why he was born hearing, but it was very important for us as a family, just to, not to dwell on it, because especially now, there’s so many beautiful examples of young, amazing deaf people. So, I think we were fortunate to always have that kind of frame of mind or way of thinking. And we’ve just always been very encouraging and supportive of his deafness.”

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LS: “I am so grateful for you sharing that perspective because so many families really do focus on that and kind of stay there for a long time. And it is valuable. It’s definitely very important. And for some families getting the genetic testing, that’s important for their family planning or if they’re going to have future children, what decisions they want to make around that. And also how valuable it can be to know what the cause is. And then if you know the cause, you might also find out that there are other body systems involved like syndromes or does it affect the vision? Does it affect different things? So, there’s a hundred percent value in getting those answers, but also many times you won’t get those answers.

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I actually recently had Dr. Laura Pretasi on the podcast as well. And she shared about how getting the diagnosis for her was the most crucial thing, because there were things that she could do to prevent it getting worse. The kind of hearing loss that she had was EVA and yeah, you can listen to that podcast episode.

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So, what I value so much is that there isn’t an answer that’s one answer for everybody. It’s a very individual, case by case, family by family. And that’s what I want people to take away.”

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TD: “We’ve had a very interesting time with my son in terms of the different educational settings he’s been in, because we started off with a school that was for total communication, which means that they encouraged oralism, they encouraged using sign and sign support. They used BSL, which is British Sign Language. And sign supported English. So, we started off with a deaf school for Ezra in that kind of setting.”

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LS: “So, all of this was happening while you were living in the UK. And so, take me through what happened next when you came to Nigeria. I wanted to say back to Nigeria, but I actually don’t know where you are originally from.”

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TD: “I’m born and bred in London, East London. I had never been to Nigeria. I’m of Nigerian heritage. I had never been to Nigeria. I had traveled to West Africa, Ghana, and I fell in love with Ghana. And because I fell in love with Ghana, I was like, you can’t go to Ghana and not go to Nigeria. So, I came to Nigeria in 2016 for a brief holiday. It was a brief holiday, but I fell in love with Nigeria also.

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We then came back again in 2017. And it was on that visit that I decided that I wanted to kind of inquire more about what was in place for a Nigerian. Where we were staying at that time was just outside the federal capital territory, which is Abuja, it’s the capital. We stayed about 45 minutes from the capital. And at that time there was no deaf school at all. Even in the capital, there’s only one deaf school and I just thought that was alarming, especially considering that the population of Nigeria is estimated at 200 million people and set to show that 3.7% from the population are legally deaf. So, that’s, you know, just under 50 million people who are deaf in Nigeria.”

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LS: “Wow.”

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TD: “Yeah. I just felt like there wasn’t enough and I never take it for granted that I was fortunate enough to have been born in the UK. Because of that, my children were born in the UK. And the educational system, especially for children who have some form of disability, it’s so different to what happens in Africa and several different parts of the world. So, I was just like, something needs to be done. And that’s kind of how I founded The Rise project.”

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LS: “That is a story. You were able to see how it was going maybe right or well in (other) places in the world and said, Hey, I got to bring this back here as well. And that it’s your heritage. It’s something that you’re coming to, people that you feel very connected to. I’m very intrigued by that. And it’s uncomfortable to say this, to say the least, when people come in with a savior mentality of like, we’re going to go to, you know, underprivileged places in the world and do this kind of work. It’s very different when it’s yours and when it’s because of your need for your family.”

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TD: “I always like to mention this because often I get people saying, ‘Oh, wow, you’re amazing and we love what you’re doing with your foundation.’ And I’m like, I wasn’t really trying to do anything. I just have that empathy. And this is something I live with day in, day out. I can’t escape having a deaf son and everything that we go through. Because not everything has been easy. Apart from him being deaf, he has additional needs. He has a sensory processing disorder. So, there were challenges, especially in school. And I think it was those challenges that made me want to look further into what was happening back home, so to speak.”

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LS: “When you founded Rise, The Rise project, what did that entail? What is it that you were able to put together?”

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TD: “So, we are advocates for deaf Nigerians. At the moment, we work very closely with a deaf school. What I want people to know is that, whether you have a disability or not, whether you are hearing or not, we are all people. We all want to have fun. Children, especially, want and deserve to have fun. And unfortunately in Africa, there’s this mentality, I would say generally, that children are not exposed to fun, as we are in the West, but especially when you have a disability, for some reason, people don’t think that deaf children and laugh and play. So, we encourage a whole load of fun, a whole load of getting the children to go out. Trips, just social development.”

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LS: “Ahh, this is it. This is why, you know, when we first connected through Instagram, I really felt connected to what you were doing because it’s not only serious all the time, even though it is very serious, of course, and it is about your child and it is about their development and their education. It has to also be about them being a kid, about them being your kid and a child in your community and how they can, you know, interact and play and have fun. And I really love this part of, you know, your mission. I connect with that very strongly.”

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TD: “Yeah. It brings me such joy to work with all the children that we’ve worked with, to take them on trips, to put things in place. We did do some storytelling a couple of weeks back, and some of the expressions on their faces, some of them have never been given this opportunity. Another thing that I like to use my platform for, is to speak to other parents, other hearing parents who have deaf children in Nigeria, because I want them to know that there shouldn’t be a stigma attached to it. There’s no taboo. And for me personally, one of the greatest things I did was go out, I actually paid to learn British Sign Language. And that was one of the best things I could’ve done because now I can communicate with my child and my child can communicate with me. So, it’s very important for me to encourage other parents to learn sign.

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So, that’s another thing we started doing. We were doing free family sign language sessions. (We would teach) simple things, basic things. What your child likes to eat. How are your feelings, emotions, just so that communication is there and then we reduce any possible frustration.”

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LS: “Communication! Yes. Yes. That is the way that we can connect and for a child also to feel that their needs are met. It’s a level of safety to be able to connect to the people that you love. I think it’s so overwhelming for many parents, especially because like you mentioned at the beginning, hearing parents say, Oh, I would love to do the oral version, you know, devices and all of that. And that works for some children and some families. And it’s awesome, but it doesn’t work for everyone. And then there’s this kind of feeling that sign language is the backup. I think there’s so much room for everything, like you could do both. You could introduce some sign. Try to remember what the goal is of doing those things. So, that’s incredible that you were able to provide that. Is it BSL that’s being used in the deaf school in Nigeria?”

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TD: “No. So, it’s Nigerian Sign Language. So many people have no idea that there are 344 different types of sign languages globally. Just like we have Spanish or French or English. It’s the same as sign language. It’s all about awareness. And I feel like, through our platform, we’re able to do that. We’re able to let Nigerian parents know. Nigeria has so many different tribes and dialects. I always use that as a way for them to connect. For instance, in Nigeria, you’ll find people who speak the language called Igbo. You’ll find people who speak Hausa. You’ll find people who speak Yoruba, and then there’s Pidgin English. And then there’s slang. Pidgin is like slang or broken English. I mean, it’s the same really in the deaf world, depending on where you’re born, where you’re raised. So, yeah, it’s Nigerian Sign Language. Yeah.”

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LS: “So, that’s why I was asking about if the classes that you’ve been offering are in Nigerian Sign Language.”

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TD: “Okay. Yes. It’s Nigerian Sign Language. Yeah.”

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LS: “Wow. That’s incredible that you’ve been able to connect and encourage and inspire a lot of families around these topics.”

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TD: “It’s a blessing really. It’s a huge honor to actually implement a little bit of change in Nigeria, especially as we’re still adjusting. But, yeah, it’s a huge honor, to be honest.”

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LS: “Yeah. I’m very curious about your daughter and how it has affected her life.”

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TD: “Okay. So, I have two daughters. So, my son is my first born. So, the seven year old, she’s just grown up, I guess, Just watching us sign. So, now she just goes off and she communicates using British Sign Language. I don’t know any Nigerian Sign Language but I am learning bit by bit every day and I have a British Sign Language, BSL level two certificate. So, all of our communication is done using British Sign Language in our house. So, my middle daughter, she is quite competent with her BSL, just based off of what she’s seen me and my son do. And I guess what he teaches her. She just picked it up and they go off and they have their own private conversations.

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If we’re out, if they want to, they can have a little joke about some thing and no one has to know and they love it. And I’m really happy that my son has that so he doesn’t feel excluded in his own home. So, it’s really important. Even my last born, who’s five, her sign is developing every day. She’s able to communicate with him as well. And even where she doesn’t know what the exact signs she uses gestures, which is how we started off in the beginning anyway.”

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LS: “Yeah. So, the reason I asked that is because one of the questions that come up for me a lot with the parents I work with is about how to make their child part of the family, because they hear about the isolation and the experience of many deaf adults who say, I just was like left in a room on my own. And was like tapped on my shoulder to come for meals. And that was about as the connection with family, it doesn’t have to be that way.”

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TD: “It doesn’t have to be that way at all. I’m very conscious about that, actually, because when I was learning to use British Sign Language, the first level was a male teacher who was deaf and the second level was a female teacher and she was also deaf. So, besides from them teaching us the sign language, they were able to give us instances or experiences.

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And I remember one of the teachers giving a very similar example to what you did about, you know, she was always told she was making too much noise. And initially, I think I was guilty of doing that with my son as well. I’m really happy that I had that opportunity with her, for her as an adult to tell me how she remembers her childhood, because I felt for her as an adult and I didn’t ever want my son to feel that way.”

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LS: “Yes. Oh, and I’m so glad that you had those deaf mentors and knew deaf adults to share their experience and that you were able to learn sign language from a native signer, a deaf person, which is very valuable.”

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TD: “Very valuable, exactly as you said, because you get their perspective and it’s authentic.”

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LS: “Yeah. Is there any piece of advice you’d like to impart to everyone that they can kind of hold on to?”

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TD: “We all have our specific platforms now, and for me, it’s really important for everyone to be inclusive and to knock down any barriers. Treat others the way we would like to be treated. So, um, in terms of using our platforms, think about others, think about the deaf community. Think about, you know, someone who maybe perhaps cannot see. Try to be inclusive with everything you do. So, if you’re an influencer, if you’re a doctor, whatever the case may be, use your platform to be as inclusive as possible.”

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LS: “I’m so glad you’re bringing that up because there is something new to learn every day about how to do better. This idea of universal design that it doesn’t have to be, oh, this is specifically for people with disabilities and over there is everything “normal”, but instead to say, how can we make this accessible to as many people as possible in, you know, adding captions, providing transcripts as we do for every podcast episode…”

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TD: “You transcripts are amazing.”

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LS: “Thank you. I’m also learning about alt texts for images and that is new for me. So, we’re all growing and learning about the things we can do better together.”

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TD: “Hopefully, to be honest, I’m guilty of it too, but it’s just like my daily mantra. So, everything that I kind of say for myself, I say to others. And it is difficult when you’re so used to a specific way of living or society or community. It is difficult to come out of that bubble, but if you can really bear it at the back of your mind, then that’s the way that we empower. That’s the way that we knocked down areas. And that’s the way that we can include everybody. Amazing. Thank you so much for that. I’m going to continue to do my learning and you know, anytime that I do something.

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LS: “Amazing. Thank you so much for that. I’m going to continue to do my learning and you know, anytime that I do something that someone calls me out, I’ll say, thank you so much for teaching me because I try.

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Okay. So, lastly, if people would like to connect with you or learn more about The Rise Project, where can they find you?”

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TD: “You can find us on Instagram. So, it is @theriseprojectng or if you want to email me, you can email on theriseproject8@gmail.com. We’re currently working on a web page so that we can have everything out for everyone to see. And so you can communicate and you can donate to our foundation because we are a nonprofit. Listen, we’re actually working on trying to open a new multifaceted deaf center in Abuja. So, yeah, those are the ways that you can keep up with us and find out about all of our amazing fundraising.”

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LS: “Yes. I’m so glad we were able to connect and get this podcast out for the world to hear.”

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TD: “Me too, thank you.”

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LS: “I’m so glad we were able to connect and get this podcast out for the world to hear.”

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TD: “Me too, yes, me too. Thank you. Just a little bit of connection issues, hahaha.

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All of those links and resources will be linked in the show notes @allaboutaudiology.com as well as a full transcript of today’s episode. I also want to invite you, Takniya, and everybody listening to a retreat that I will be hosting and running in April, I’m very excited about it. It is going to be a retreat for parents who have a deaf or hard of hearing child. It’s mostly for hearing parents, that is, you know, who we’re trying to talk to because I believe that this is an underserved and underinformed group of parents in the world that are just getting a lot of conflicting information and a lot of big decisions. So, whether the diagnosis was recent or many years ago, I am going to be doing a seven day retreat. We meet every day for one hour on Zoom. So, it’s kind of like, not very intense. So, it’s not like sitting in front of your computer for six hours. I’m not doing that, but spreading it out over a week.

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We’re really going to have an experience together. And it’s specifically to learn the things that come around this, like learning how to speak up and advocate and talking about how to find connection with your child, no matter what the communication barriers are, to connect with them, to build relationships with them. And like we talked about the sibling relationship and extended families and bringing them into your community too. So, I’m very excited to invite you all to this free retreat and you can all sign up for that at allaboutaudiology.com/retreat. It’s totally free. It’s open to parents and professionals can come too but I’m really talking to parents here and I’m really, really excited.

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There’s going to be a lot of transformation, a lot of learning and connection because we’ll get to meet other moms from all over the world. And dads are welcome too as well. Haha. Very good. So, I will see you there and I’m really glad we were able to connect.”

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TD: “Yes, likewise.”

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Thank you so much for listening to the All About Audiology podcast. Come and find me on Instagram @allaboutaudiologypodcast, because that is where I hang out and make connections with you all over the world. My DMs are always open and I am so grateful for your listenership.

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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So, we did have a couple of technical difficulties throughout our call, and we continued our conversation a little bit just by sending voice notes to each other at Instagram. So, here are some more of the things that Takniyan wanted to add to our interview. And again, I’m so, so, so grateful that she shared so many different elements of her story and her experience. So, here are those messages.

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TD: “He found it difficult to express himself. So, he was, I guess, lashing out. He was expelled from one school, permanently suspended from two. It was difficult for him. It was very difficult for me when he was expelled from the third and final school, it was just very traumatic for me. And my point is that if he maybe was not a black boy, further considerations may have happened. And because it was so stressful in the UK, it just made coming to Africa much easier for me…

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We’re in Nigeria and then it’s completely different. So, if you have any kind of child with a disability, anyway, you’re pretty much ridiculed. If we’re out and we’re signing, this happens in London anyway, but it just happens times a hundred here, people come and pray for you. We are Christians and for a long time, I didn’t go to church because when he had his cochlear implants, this was even in the UK. In church, people would always, you know, kind of force us to come to the front and try to pray it away, oils and everything. And I really believe in God and I feel like God is in control. My God is in control. And who says that being death is the end of the world, because I know amazing deaf people, deaf teachers, deaf actors, deaf dancers. If my son could only grow up and be like some of the deaf people that I follow on my platform and Instagram, that would make me so happy.

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Culture, race, definitely played a huge deal in why we moved back. And now I just feel like I have to do something.”

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LS: “Thank you so much for all of this. And I think this is such an important topic. I wish we would have delved into this more and maybe we will on a future episode, about the praying and the miracle stuff and how that’s many times in conflict with reality what’s actually happening and what the family actually needs from their support network and spiritual community. And that is so common. So, I just wanted to comment on that first because that just at the end, really, really resonated with me. And also, I’m sorry you had to go through that in a way. It’s also like a place to educate and then sometimes you’re forced into this education role when you are the one who needs support. And that’s like also a thing that parents need to navigate.”

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The post All About Supporting Your Child Unconditionally – Episode 66 – with Takniyan Debbie Dachi appeared first on All About Audiology.

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Read the full transcript here

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Ina S. Selita, a third year AUD student at The CUNY Graduate Center (which is also the same program that Dr. Saperstein graduated from) is the creator of Neuro-Hear. Neuro-Hear is a website that takestextbook based audiology concepts and explains them in easy to understand ways. In today’s episode, Dr. Saperstein and Ina talk about the AUD experience and what it takes to become an Audiologist. Tune in to learn about Ina’s experience of implanting rats with cochlear implants, tips to have a semester with limited stress, and the ways in which social media can influence the spread of information that focuses on audiology!

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If you are interested in Communication Sciences, Communication Disorders, Speech Therapy or Audiology, this is the episode for you. If not, check out another episode at: https://allaboutaudiology.com/

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4:25- Ina implanted rats with cochlear implants

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Ina cold-emailed professors in the NYC area in search of a research position. She got a volunteer position at NYU and eventually built herself up to be hired as a full-time research associate.

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12:50: Synopsis of Ina’s research: 

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Ina created a new system for Cochlear Implants insertion, stimulation, and behavioral training in rats which involved rat auditory training and Rat ABR’s.

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14:50: When Ina decided against medical school and looked into audiology

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“It was all organic chemistry.” Ina decided that she did not want to be in school for so long and decided that she wanted to do AUD since such a track allows her to work in either clinic, educational or consultant audiology.

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19:00 COVID affecting the educational experience of audiology students 

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Students are struggling to get the complete training, and are not receiving the hands-on work with actual patients. Ina struggled with completing her required hours since she saw a minimum number of patients. 

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26:00 Positives of going through Graduate School during COVID

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Ina realized that certain people have trouble hearing and understanding even without wearing masks in their day to day lives (since everyone has been wearing masks recently!). Ina has become more empathetic to her patients who have trouble hearing as a part of their regular day to day experience.

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27:30: Self-care during Graduate School 

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As a grad student, you needs to accept that things will be stressful. Thus, it is healthy to have proper coping mechanisms. It is also important to find hobbies outside of audiology.

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30:00 Medical School vs. Graduate School

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Graduate School has peaks and valleys but it is nothing like business or the demanding residency of medical training. 

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31:30: Planning your semester and scheduling the semester

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Once you get your syllabi, schedule your semester. Get ahead on projects when you have limited work.

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34:00: Working with your cohort of peers

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You are going through the same grad experience and classes and it is good to support one another and find study pals or share notes. Though, balance this with doing what’s right for you and do not compare yourself to others.

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37:05: Ina’s post graduation plans

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Ina is intrigued by everything in the field but wants to work with clients within a clinical setting.

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38:30: Audiologists representing the field on social media 

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Dr. Ben Thompson:

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Homepage
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https://www.youtube.com/channel/UCuH8CgFikmhRc2ALsI0j4uQ

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Dr. Stephani Marie Rose:

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https://www.esorco.com/about

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Doctor Cliff:

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https://drcliffaud.com/

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https://www.youtube.com/channel/UCpikvbsbLd6tMcuN7AEJ-1A

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For more resources and research visit:

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@neurohear

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https://neurohear.com/

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Mentioned In this episode:

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Listen Next/Related Episodes

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All about YOU: Genetic Hearing Loss Life Experience” – Episode 65 with Olivia Rains

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All About BAHA – with Abbi Perets Season 2: Episode 21

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Students
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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and this is the show where we explore audiology together and how it matters to you. Whether you are a parent to a child who is deaf or hard of hearing or you are a professional related to our field. Audiologists, speech therapists, teachers of the deaf, teachers… all you fun therapists out there doing OT and PT and all the other things and caring for the wonderful kiddos and patients that we serve.

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So, on this show, we talk a lot about different topics. There’s kind of a mix in the audience, like I said, on the patient and family side and on the professional side. Today, we are focusing on students. So, if you are interested in communication sciences, communication disorders, speech therapy or audiology, this is the episode for you. Of course, everybody is always welcome to listen but perhaps you will find at the allaboutaudiology website, a podcast episode for a topic that you are more interested in, tinnitus or counseling or anything like that.

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So, without further ado we will be offering lots of advice and interesting stories for students today with our special guest, Ina Selita, who runs an amazing Instagram account @neurohear and she is going to share with us her journey to audiology which has not been a straightforward, traditional path. So, I’m excited to listen and hear about that. And we are going to talk about a lot of things. You know what, let’s just jump in.

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Dr. Lilach Saperstein: “Welcome, Ina, to the show. How are you?”

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Ina Selita: “Thank you so much. Thanks for having me and thanks for All About Audiology. I use it all the time to just catch up and all the fun things that you have to offer on here.”

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LS: “Thank you. I love the students sending me DMs on Instagram. Listen, that’s how this happened so if you are on Instagram, DM me and we can schmooze.

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I have to say that I love your Instagram account and you break down the concepts, like oh let’s talk about this or that that you just learned about. So, it’s very approachable from the student perspective. It’s also very well researched. This is the thing, I have more respect in a sense for students and for early professionals because they are so in it, studying and the research and everything. And as you get on with your career, you kind of do the day to day stuff more so sometimes students know more about what they are talking about, hahaha, then people who have been in the field for longer.”

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Ina: “I definitely understand that. I mean as I learn switching over from in house clinics to actual clinics where I’m seeing real patients, there’s so many things that you tend to forget that you might have learned in class. So, I just like to use neurohear, literally as I’m learning it, I’m teaching it. This way, I can explain it maybe in words that most people can understand. It’s not textbook definitions. It’s always just little snippets on the journey of audiology.”

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LS: “Yeah, and that’s also just a great tip for anyone in grad school or anyone studying anything, if you can explain it, then you have mastered it. I always tried to do group study sessions and study with other people because if I’m there by myself, it’s like, this is boring. But if I have to explain it, it’s like, yes, light it up.”

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Ina: “Yes. And when you say it out loud, it becomes real and it actually sticks. There was a time where, not even just a few weeks ago, I took my comps which were oral and I was terrified of this idea of having to speak and explain certain things to my faculty members and my professors. So, I took it upon my Instagram account to just get comfortable with the concepts and ideas and just to talk about it on there and it was a great way to help me practice for the comps.”

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LS: “That’s amazing. I love the whole idea that you don’t need to know everything. You don’t need to be an expert to share what you are learning and talk about what you are going through. So, I really, really appreciate that and I know that there are so many students, AuD students and SLP students who are on Instagram. So, I hope you are all listening and tagging each other for this episode because we have a lot of fun things we are planning to share with you.

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So, I want to start with one of the most interesting things you shared with me. You told me that you implanted rats with cochlear implants. So, please take us back and tell us how you got to that moment in time and how that brought you to audiology. So, tell us about yourself, Ina.”

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Ina: “That’s always a fun thing to start off with. I think people find that the most interesting thing about me, that I implanted rats with cochlear implants and I love to say that. So, I started off at Hunter College and I was on the pre-med track. I was majoring in biology and neuroscience. I’m an immigrant myself and I come from very immigrant-mentality parents where it’s like, you become a doctor, lawyer, or an engineer. Something with a strong foundation behind. So, I always knew I wanted to become some sort of health care worker, whether it was nursing or becoming a doctor. I just knew I wanted to help people.

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So, I majored in biology. I didn’t have that guidance from my family that maybe most people do. I was the oldest child, so I kind of had to figure it out on my own. And I was learning essentially through my friends and through my school the next steps I need to take. And so, I needed to get involved in research. So, I cold emailed about over 50 professors in the New York area from Columbia, CUNY, NYU, just asking if I could please volunteer in their labs just to learn and watch what is going on in research. And my old PI reached out to me and told me that he has a position available and I should come in. So, I took it. I didn’t ask questions. I just took it and he assigned me to a project on cochlear implants.”

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LS: “I just needed to stop you right here for a second and make sure everybody heard that. You emailed people you did not know, who did not know you, without any connection or person in between. You just like found their email on a website that they are faculty somewhere, and then emailed them and said, ‘Hi, how can I help you?’ So, if anybody wants to learn about how to get gigs, no one’s going to come and knock on your door and say, ‘Welcome, would you like to learn this?’ Like you have to go out there and get it.

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And if you will allow me one more interruption here, on the podcast, one of the guests was Abby Perets. She is an incredible mom of five, and we had a whole podcast episode about her son and his BAHA and microtia. And that’s a great episode. I will link it in the show notes. But Abby Perets is also a freelance writer who teaches other freelance writers, how to be successful, specifically moms, because she had a son who was battling cancer and that devastated their whole family and she needed to figure out that story. And then when he got well, she said, there’s all these other moms in these groups that I’m part of who need help bringing income but they can’t have a regular job. They’re always at appointments and stuff. So, she’s like, let me teach you how to be a freelance writer. And that’s how her business began. So, I’m like a big fan of Abby’s. We’re friends now. Super fun. And she always talks about this, about cold pitching. If you’re in freelance or if you are a student, no matter who you are, if you want something, you don’t just send two or three or ten or twenty emails. You keep going until you get a “yes” and you need to go through the no’s one at a time, swim through them. And that’s for grad school applications and recommendation letters and all that stuff.”

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Ina: “It goes for everything. At Hunter college, it’s a public school so, you don’t get that one-on-one interaction with your advisors as much as maybe you do in a private school. So, you really have to fend for yourself. And there’s so many people in your classes. I mean, all my classes were like 500 student lectures, all majoring in the same topic. It’s very competitive in that sense. So, I didn’t know anything else other than I needed to get research in my resume if I wanted to go to medical school or do my PhD. So, that was just kind of what I did. And I always recommended that. And I always took that with me with every other step in my career: is to not be afraid to ask if you need help and just reach out to people. People are willing to help, but they can’t get to you if they don’t know that you need their help. And so, even with my account on @neurohear, I make sure to take my time to answer questions to these students who are in high school or in college, and just want to know these little simple things that they don’t find out at orientation.

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And I still do that till this day. I’m still meeting with different audiologists and reaching out to other people in the field and just kind of getting ideas of where I see myself fit in. Because it is such a diverse field, even though, like there’s so many things you can do as an audiologist, and it’s important to have a strong foundation so that you can know which way you want to take your career towards.”

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LS: “And it’s helpful too, to the people you’re reaching out to, because they want research students. They are looking for undergrads sometimes, or even high school students. Or if you say, can I volunteer? Like I’ll come and clean up and help you fax things. I don’t know. Do people fax things still?”

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Ina: “They do.”

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LS: “Ha ha. Okay. Like whatever you can offer that is, I would like to be there as help to you and kind of make it that you’re offering your services or your help in addition to what you’ll get out of it.”

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Ina: “Right. So, at NYU, when I first started, I was doing very simple work. I mean, I was working with rats. So, half the time I was literally just like tagging their tails with a color so that we can discriminate which is which. So, it was very simple work in the beginning, up until the point where I saw that I really enjoyed this. I wanted to learn more about it. I wanted to get more involved. So, my PI at the time saw that and he kind of allowed me, he gave me more work so that I could learn. And I spent four years at NYU. I started off as a volunteer, but I didn’t spend four years volunteering. I eventually was hired as a research intern and then hired full-time as a research associate.”

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LS: “Just to clarify, a PI is principal investigator, the person in charge of the research study.”

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Ina: “Yes.”

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LS: “Basically your boss, haha.”

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Ina: “Basically, my boss. Yeah. And he was great. I actually remember the day I got hired. It’s such a great story. My mom called me and she was asking me about my tuition and the payments and she was like, ‘Ina, you need to get a job and pay for your textbooks because I can’t afford this right now.’ And I was so mad because I was here working for free because I was volunteering still. And I knew I needed this for my future, but I also knew that I needed a job because I needed to pay for my commute to the city every week which was like $50. So, things added up and essentially, my parents have two other kids that they need to take care of.

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So, I remember going up to my boss and I was like, I’d love to stay here. I’m enjoying it so much, but I need a job and I can’t continue to work here for free. And he said, ‘Okay, good luck finding a job.’ And he was very kind about it, but I was so upset because I was hoping he would offer something. So, I ran into the room where the rats were and I was crying. I came out. I washed off my face, whatever. And then he was like, ‘Hey, why don’t you work here?’ “

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LS: “Haha. Okay, so what did you learn from that? What did you learn from that interaction?”

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Ina: “What did I learn from that? Honestly, I don’t even know what I learned from it, but I just knew that I was so happy to be there at that time with that person and the way things worked out, it was really good. You have to ask for things like still, no matter what, he knew that I needed a job, he knew I wasn’t just going to leave. So, he was very kind in that regards. So, I stayed on and we continued doing research. Eventually we developed a physiological and behavioral system for hearing restoration with cochlear implants, but in rats. So, we created that rat model. So, that was how I learned how to implant rats with cochlear implants.

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And the research is so much fun. So, as we know, cochlear implants, are these neuro prosthetic devices that provide hearing to the deaf patients. And so, the outcomes on how these patients learn is highly variable, even with prolonged training and use. So, the central auditory system needs to learn how to process these new signals coming from the implant, but it’s unclear how these neural circuits in the brain adapt or fail to adapt to such new input. So, we created a new system for cochlear implant insertion, simulation, and behavioral training in rats. We recorded from the cortex while we were stimulating through the implant and the animals learned to use the implants for auditory dependent tasks. We assessed frequency, discrimination, and detection and we made sure that the animals were learning through the implant because when we were turning it off, they weren’t able to do the auditory tasks. So, that’s just like a very brief synopsis of the research.”

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LS: “So, what you’re telling me is that you didn’t just implant them. You then gave them auditory training and rehab and like, took them through the whole process. Did you do ABRs, little rat ABRs? Haha.”

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Ina: “We did rat ABRs and I remember, when I first was doing ABRs it was the same thing as we do with patients now, but it was just so funny to me when we got to clinic in real life, like in audiology, the program…”

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LS: “With people. Oh my goodness. Haha. You couldn’t paint their tails. Hahaha.”

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Ina: “I couldn’t paint their tails. Of course not, haha.”

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LS: “Okay. Wait. So, then what happened? When did you drop med school or like, what was that when that discussion came up and you switched to audiology?”

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Ina: “Yeah, it was organic chemistry. It ruined everything for me.”

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LS: “Same.”

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Ina: “When I was an undergrad, I realized I did not want to go through medical school. I just didn’t enjoy the idea of being in school for so long. It just wasn’t for me. I applaud anyone that goes through medical school. It’s so much work and you sacrifice so much. I wanted something with a little bit less schooling, for lack of better words. And so, I was stuck between a PhD and an AUD, so I was kind of going back and forth between those two. I realized, as I worked, I knew I wanted to do AUD because it put me on a track. And I knew when I started, I knew when I ended and there was so many different things that I can do with the degree myself, whether I wanted to work in a clinic or educational audiologist, or work in the industry or consult. The options were open.

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I spoke to some audiologists that were working as research audiologists on my team at NYU, and they were so happy. And initially that’s kind of where my path was. I thought I would become a research audiologist, but as I continued in the program, I realized I really love working with people and with patients. And it’s so rewarding to me to help patients, just better improving their lives and their quality of life. So, I knew for sure, I want to work in clinics.”

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LS: “I bet you never got a thank you note from any of those rats. Hahaha. Sorry, I really can’t let go of that. It’s too fun.”

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Ina: “I know. People love that. They love the idea that I worked with rats and cochlear implants and they were the tiniest cochlear implants, they were so cute and they were just so big for their heads. It was adorable.”

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LS: “That’s hilarious, but wait. Okay. I need to ask one more question about this. The external processor, did they have it on all the time or were you just using that for the training?”

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Ina: “We were just using that for the training. So, they weren’t wearing it when they were just like in their play cages and what not, so we only turned it on and connected it. It was built a little differently than the traditional ones we use, obviously, on real patients.”

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LS: “I can imagine. Yeah, it didn’t come in like all the different colors. Hahaha.

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All right. So, moving on. The other cool thing we have in common, actually, we probably should have mentioned this already is that, you are currently a third year student in the program where I also completed my doctorate degree, AUD at the CUNY graduate center, the city university of New York, one block away from Harold square, Macy’s in Manhattan.”

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Ina: “And the empire state building.”

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LS: “This is the difference between you and me. My landmark is Macy’s. Your land mark is the empire state building. Well, I just know that because that was my train stop from the queue coming in from Brooklyn. So, I would get off in front of Macy’s and then walk that one long.”

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Ina: “Avenue. That forever long avenue.”

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LS: “It’s so long. Okay. And like you’re late for class and it’s snowing and there’s all these tourists taking pictures and you’re like, people get out of my way. I got to get through here. I made a point. I made a real point to always look up and see that empire state building. I did notice it. Okay. And just like remembered, I’m in the center of the world right now. This is amazing that I live in this city, close enough anyway, and that I get to go to school here. And even though I was tired and I was either pregnant or postpartum, pretty much, I had two kids throughout grad school. It was a lot, it was tough. It was a journey. But I remembered that and I knew that I’m doing this, like you said, for a set amount of time, I had a very clear plan. This was a four year plan. Get through this degree and then go off into the world. And hey, look at that. I did move to Israel. So, now I kind of miss Manhattan. I have to be honest.”

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Ina: “Well, you’re not missing much right now. I haven’t been in class physically since March last year. So, it’s been quite an interesting transition, moving everything online. I was in my last in-house clinic placement when COVID happened. And I was so excited for this placement because this is where we were learning those real clinical hacks, I could say, because a lot of what you learn in audiology at school isn’t the way you actually practice it in clinic. There’s so many different things that you do differently. And this was the placement where we were learning all those shortcuts to masking, which I was very excited about because I’m terrible at masking.

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And so, then it got cut really short and everything transitioned to Zoom and virtually learning. And it was really difficult. It was really hard to do simulation clinic. It’s not the same and even more so, I think, you know, even though this did happen to us too, the year below us, hasn’t seen any patients yet. So, it’s really difficult to be in this kind of program and be socially distant, especially when you’re working with patients and you’re in a sound booth. So, yeah.”

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LS: “I’m so glad you brought that up because this is something we definitely wanted to talk about on this episode, how this year, different than all other years for everybody, has just turned everything we think about and know on it’s head to ask the questions of, well, how many clinical hours do you really need and what are you going to learn? And what’s important? How can we get that experience? So, that is really hard not being able to even see patients. And then on the other side of that, it’s obviously very hard for patients who need the care and they can’t have access to the services that they need, you know, not to minimize here, but we’re focusing on the grad school experience at this moment.

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So, what do you think will be the implications of that throughout the next year and a half or so of your program?”

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Ina: “Yeah. Personally for me, I struggled a little bit with my hours in my last placement. I was working at a children’s hospital and I wasn’t seeing that many patients because of COVID, because of staggered schedules. We were working with children with a lot of other co-morbidities, so we had to be extra careful and we were seeing maybe three to four patients a day, which is very minimal, especially as a student who’s trying to get their clinical hours. So, I ended up starting clinic at my other placement a lot sooner than I was expected to, just to make up for those hours. And it’s been a little different here. One thing I noticed a lot with the other placement that I was at, where I wasn’t seeing as many patients, all these children and their regression in school, socially, it was so heartbreaking to see the causes and the effects of what COVID has brought upon their lives during this time and how that relates back of course, to them having a hearing impairment. A lot of students were struggling hearing their classes through zoom. They couldn’t afford the hearing AIDS that connected wirelessly and Bluetooth. So, it was a very eye-opening experience, which I enjoyed.

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My placement now is a little bit more different. Things are changing as vaccinations are rolling out, patients are getting more comfortable with their practitioners, especially because we were one of the first ones that were able to get vaccinated. Things are looking better. However, I definitely feel more for the year below us who lost this year of building their clinical skills and just being thrown directly into patients can be a little challenging.”

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LS: “I heard that somebody was talking about this, you know, across all the ages that it’s like newborn babies, zero to 12, who are going to spend their whole first year with very limited social interaction beside their caregivers and siblings. And then first graders who are coming into school and learning to read and all those foundational skills that they’re not getting that in a school environment. Then they mentioned eighth graders and 12th graders, basically all the years where there’s some very big transition throughout a child’s life that, the high school graduation and moving from, school age to high school where now it gets serious, you know. The classes matter. And there’s all these state tests and APs and whatever.

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But I also think that, you know, obviously again, everybody’s been affected in one way or another, but there is something about specifically being in a graduate program where you do have that lockstep. You need one class to get to the next class. There’s certain number of hours you need to fit into these 18 months of clinical hours, whatever. That if something gets mess there, then your journey could get really either lacking in what you’re getting from it or extended, which is, I know what other programs have done. They kind of just like added another year so that they could get those hours.

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So, wherever you are and whatever you’re dealing with, I think the world knows that this is not ideal. And then probably as you start to enter the workforce, this year and everybody’s resume is going to be like, well, what were you up to then? What did you miss? What do you need help with and making up those hours and skills later on, hopefully.”

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Ina: “Yeah, it’s been interesting. It’s definitely had some sort of toll on our abilities and our confidence, especially, I think a lot of what we do, we need to be confident in ourselves, and as graduate student clinicians, we are the opposite of confident. Maybe it’s just me, but I doubt everything. I call for my supervisor. I’m like, I don’t know if this matches up. I need to know. And I think that is because of how things got cut the way they did. And it was very abrupt. And with audiology, as a student, if you’re not practicing for two weeks, by the time I get to the audiometer, I’m like, what is this? I don’t know what this is anymore. If you’re not practicing it every day, you kind of forget it until you start doing it again too. It’s an interesting time for a lot of students now. It’s not just for audiology. I know it goes across so many different fields and jobs.”

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LS: “And what would you say if we can put on our little, for a moment, silver lining hat, even though I’m very anti toxic positivity where everything’s fine. Everything’s good. Like, no, the house is on fire! Do you know that meme with the dog? Okay. We still can maybe find some gratitude for like a minute. Do you think there have been any positives for you throughout grad school in COVID?”

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Ina: “So, one thing that I really noticed with myself is that during COVID with keeping our masks on, I rely so much on lip reading, I rely so much on seeing people’s mouth move and understanding what they’re saying. And this has just raised so much awareness on how important it is to hear. I’m getting coffee at the Starbucks or whatever and I can’t hear anything and I feel uncomfortable and I feel like I’m making the other person uncomfortable because I’m asking them “What?” so many times. It’s just a simple part of my day and I just have become so much more empathetic to my patients because of this.

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And just the social isolation that we’ve been dealing with as a planet, I guess, you know, just understanding that a lot of people, this is their way of life, whether it’s a hearing impairment or other type of disability. It’s so important to kind of reflect on that and see, put yourself in those shoes and see how that other person is feeling. And, you know, just simple things like greeting my patients or making sure that they understand everything before they leave and not having them feel overwhelmed and whatnot. It’s definitely brought a perspective to me that probably wasn’t there before, the isolation on its own.”

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LS: “Yeah, that is very good one. And we always want to relate to our patients as much as we can and like really be human about our clinical care. That’s something we talk about on this show a lot, that there’s definitely a human on both sides of this interaction, which is something you have heard me talk a lot about in other podcast episodes.

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And I wanted to also talk to the students and professionals who are listening and talk about taking care of yourself through grad school, specifically taking care of yourself through grad school in a pandemic, and what that has been like for you. What were the challenges? What are some things that you found to be super helpful in your interests outside of audiology and self care?”

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Ina: “Yeah, I definitely took on a lot of different hobbies throughout quarantine and grad school together. I tend to be a very anxious, high energy person. And sometimes that can lead me spiraling into panic attacks before exams. And right before my comps, I got very, very anxious. I started to realize how important it is for me to do little things for myself to take away from all these anxieties and all the stresses of the world. And some things that really worked for me was as simple as taking a walk when I saw I was getting in my head or doing a workout or these very cliché things that actually work.

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Taking a bath, doing my nails. It’s okay to make time for yourself. If you’re not going to make time for yourself, things aren’t going to go right for sure. I mean, there’s going to be so many different things in your day that come up, whether you’re in school or whether you’re seeing a patient that are gonna stress you out. And it’s important to realize these things and accept them, and then also have healthy coping mechanisms.

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So, I mean, there’s a lot of things that I did during grad school that changed my life. I met my husband, got engaged, got married, all like, almost within COVID.”

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LS: “Wow. Congrats!”

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Ina: “So it really puts things in perspective in that sense that there’s so many other things that are important in life too.”

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LS: “Definitely. And I think that goes back to the med school thing where I also was like considering med school and undergrad. And pretty much everyone I spoke to said, ‘You definitely have a way to make this work, but burnout is real and it comes hard and it lasts for like eight years.’ It is intense for a long time, whereas graduate school, even though it is intense and a lot, there are like peaks, peaks and valleys. Finals time, when you have your comp exams, oh, okay. Yes. You buckle down and you get serious and you can’t see friends and you can’t do anything, but you know, it’s not like that for the whole duration of the four years. You have to write a big thesis, but it isn’t like the way that med students and later on residents have, you know, 24 hour calls and all these other really intense shifts. So, when you’re thinking about career choices, make sure to talk to someone who’s in it and get the real life, day to day operation of what is this actually going to look like? Will I be able to see my family. Can I eat food besides for like pizza?”

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Ina: “Yeah. I mean, there’s so many times where I forget that lunch is one meal and not five different snacks throughout the time of twelve and three.”

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LS: “Exactly.”

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Ina: “You’re right. I mean, I think you said it perfectly, there are peaks and valleys in the program. There are weeks that it’s more relaxing than other times, and that’s a really good time to get a head start on the projects and the assignments. And throughout those one credit courses. I mean, that one paper you have to write, it’s best to get it out the way in the beginning so you don’t have to deal with it at a peak where you have a test and you have the midterm and you have all these other things going on. So, just balancing your schedules.

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Luckily when you get your syllabus ahead of time, it’s really important to look at it and see, okay, what can I get out the way? The most simplest thing that you can do just to get out the way, it will help you so much. Your future self will thank you so much for just doing like the smallest thing. Yeah.”

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LS: “That is a good tip. Very, very good tip. I remember that first week of every semester getting all the syllabi, sitting with my highlighters and my planner and it was like, okay people. And I love that. I love the fact that being a student, you knew what your next four months were going to look like, specifically to the minute. So, I also knew, okay, these are the times I’m already in Manhattan. I’m already there. So, I’m going to add two hours of library time on that day and things like that. So, get organized!!!”

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Ina: “Yeah, getting that calendar all filled in as soon as you get those syllabi, it’s one of my favorite things to do in the beginning of the semester is write down all the days I have class and all the days I don’t and just kind of build this tentative schedule for myself that I can follow every day. And I can schedule all of life events around it and it works out. It’s not that bad.

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In terms of managing life in grad school, it can get very overwhelming in the beginning if you don’t have that schedule within your routine, within your everyday routine, and can get into bad habits of sleeping in late because you have a class at four, but you gotta do what’s right for you or what works for you. That’s going to be different from everyone else. I know at some point during the program, I would ask the girls in my cohort, ‘Are you studying?’ Because I felt guilty because I wasn’t studying, but everyone learns differently. And it’s important to not compare yourself to your peers, because what may work for them, may not work for you and vice versa. And accepting that and understanding that, that maybe you need five hours to learn this concept and someone else needs one or the other way around. That’s really important, because I always did that. I always compared, and if my friends were studying 12 hours a day, I felt like I need to sit there and study 12 hours a day too. Meanwhile, you know, there can be so many different little things that you can do during those 12 hours, if you just have more of a strict approach with your time.”

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LS: “Yeah, and exactly, not to forget that each person also comes with their own background. Because you knew what cochlear implants were, you yourself were implanting them into rats, if anyone missed that from the beginning, you know. So, you knew a lot about audiology concepts from a research perspective. And I remember that in some classes like the statistics class, we had somebody in our class who majored in economics and they were like breezing through that class when everyone else is like, what? This is so hard math and this is not what we want to do. So, everyone comes from their own background, their own knowledge and their own learning style. That’s such a good tip, not to compare yourself to your cohort. Yeah.”

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Ina: “Yeah. And at the same time, it’s so important to work together as a group. You can get done so much more if you have a supporting group of people, cause you guys are all going through the same thing, you’re dealing with the same nuances of being a grad student one way or another. Having a group of people in which you can study with, you can freely ask questions and just kind of split the workup. Because there’s a lot of group work, at least in my experience, there’s been tons of group work and just understanding who you work well with and who you don’t and keeping it that way along the way will help tremendously and your time efficacy as well.”

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LS: “So true. And if you can develop those relationships like early on, make that a priority. So, I went to grad school, graduated grad school, 2017. So, I don’t know what that is in the timeline of other people’s relationship to technology. But that was the first year I had a smartphone. My parents were very strict on the whole smartphone thing. I didn’t even have texting throughout college. And then here I was like in grad school, that was the first time I learned about Google docs. And here I was in a classroom and everyone’s typing into the same document, taking notes together. I was like blown away by this. Hahaha.”

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Ina: “Google docs is one of my favorite things till this day.”

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LS: “Yes. And Google docs and Google sheets and setting up like things that everybody could be editing at the same time. Even presentations, you could work on them. Obviously, everybody else knows this right now. Okay. This is like old news, especially post COVID. Everybody knows about virtual, working together stuff. But the fact that we can do a presentation without having to meet at the library, this was a game changer for me.”

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Ina: “Yeah. It’s true. One of the things that really helped us as a group for this last comp that we did, we knew it was going to be oral. So, I actually organized so that we all meet on zoom and we just freely ask questions to one another that we were expecting from the test and it kind of put us in the spot and really tested one another on our skills and it made everything so much better for the day of the tests. We were more comfortable with speaking out loud, speaking on the camera, in front of other people. So, just thinking ahead in a way and how we can work together to make this easier for all of us essentially is so important with the people that you’re in the same class with.”

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LS: “What do you think your plans are for after graduation? Do you have an idea of which direction you want to go with Audiology?”

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Ina: “I love that question. I’m so intrigued by everything. It’s so hard to answer it. I will definitely be working clinically with patients, whether that’s going to be more hospital-based or, private practice based. I’m not sure yet. It’s a hard time right now because it almost seems like I’m willing to accept any job I can get because it’s COVID and jobs are so limited and it’s scary because the group that the year that just graduated before us, they graduated in May, which was really difficult to land a job. It was kind of right where COVID was still pretty bad. So, I’m grateful for any job. However, if I had to choose, I think I’m very interested in private practice, maybe one day opening my own private practice and taking it from there.”

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LS: “That’s great. That’s a really good direction. And I love that you said that you’re intrigued by everything because that’s such a good place to be, and don’t lose that enthusiasm for everything audiology. And, like you said, you might switch in five years, in 10 years. You might become a podcaster.”

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Ina: “You never know, you never know. Maybe I’ll become a YouTuber and do like cool audiology YouTube videos.”

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LS: “Totally. There’s amazing audiologists doing great stuff. Dr. Ben Thompson, he was on the show. He talked about tinnitus. So, he’s on YouTube. Dr. Rose, Stephanie Marie Rose. She’s Dr. Rose helps you hear. And Dr. Cliff. Listen, there’s audiology representation on YouTube. So, you could definitely join that. Dr. Don too.”

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Ina: “I think there are so many, and I love seeing all the different audiology accounts on social media, whether it’s Tik Tok or Instagram or YouTube. I love listening to those and I end up learning so much, especially when there’s a concept that I don’t understand well enough to explain it. I think that’s definitely when I go to the YouTube audiologists, because they do such a good job collectively at explaining really hard concepts, sometimes, in a very simple way.”

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LS: “Yeah. And I think this also goes back to the other thing we spoke about, which is that you are not only an audiologist. You have family, whatever that looks like. You have your own interests, your own hobbies. And maybe you also have interest in something else, like business, or you’re also interested in social media marketing and you do this. There’s other skills in your life that you could incorporate into your career that’s not just like one thing.”

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Ina: “Yeah. There’s many avenues to the field. It allows you to kind of be open-ended in that way. I don’t know where I’ll be in five years from now. I didn’t know five years ago that I would be here, to be honest with you. So, I enjoy that journey and that excitement, and I’m open. I’m open to new ideas. I’m open to trying things out. I’m so excited overall.”

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LS: “Yes. Ina, thank you so much for sharing your journey with us and so many tips. So, just to end off, I always ask my guests, what advice do you have to our listeners?”

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Ina: “My advice would be if you’re an audiology student and you’re unsure about the different career paths that are available for you, if you have specific questions about what you can do or how much can you expect to make, or these uncomfortable questions that aren’t necessarily always answered, ask the people that you think may know. Reach out to people. Cold email, cold call.”

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LS: “You are so right. Ask if you don’t know, that is amazing advice. In fact, we did a whole episode on that, “No dumb questions”, that was with my husband, Dr. Yona Saperstein. We talked all about feeling confident and comfortable asking your providers questions. So, thank you. That is wonderful advice for our listeners.

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And if anybody wants to find you and follow you, @neurohear on Instagram, and while you’re there, you should also come and send me a DM that you heard this episode. What resonated for you, what your path is, what you’re thinking about in audiology. I’m @allaboutaudiologypodcast and allaboutaudiology.com.

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Thank you so much for being a part of this community and for listening. I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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Ina: “Thank you.”

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The post All About The AUD Student Experience – Episode 64 – with Ina Selita appeared first on All About Audiology.

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Read the full transcript here

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Today’s guest is Dr. Sarah Sparks, who is the founder of Audiology Outside the Box, a new audiology telepractice. She provides clinical services to clients in DC, Maryland, Virginia, and Massachusetts along with educational resources on communication and audiology-related topics. Dr. Sparks’ goal includes wanting to “provide a space where people can get support for their unique communication needs with an audiologist who communicates in both ASL and spoken/written English.” At the end of the day, she believes that Deaf culture and audiology have a place where they exist together and it is her mission to bring about this change.

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This week on the All About Audiology podcast:  

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Before losing her hearing, she was fluent in spoken English. This is a different experience than someone who is born deaf. She started to study audiology around the time she started losing her hearing.

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Dr. Sparks became a cochlear implant recipient while studying for her doctorate of audiology between the first and second year of her AUD program. Talk about a truly hands-on and practical experience!

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As an elementary school student, she befriended a young friend in elementary school who was deaf. She feels privileged to have been exposed to such a community at an early age.

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During her educational experience, Dr. Sparks learned that many assumptions she initially held about audiology were not necessarily correct. For example, audiologists in The U.S. do not only work with kids; they actually work with adults too.

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She tries to take more time during appointments. Since appointments are not always provided in various modalities, she tries to fill in for what’s missing by providing services in different modalities (i.e English, ASL SimCom or Cued-speech). 

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Dr. Sparks’ education and upcoming webinar components are accessible to the general public (i.e. through social media platforms) since they focus on general info about audiology. While, her personalized counseling services are offered to individuals clients, on a case by case basis, in locations where she is licensed (DC, VA, MD, MA).

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Sign language isn’t “just an option if a cochlear implant does not work out.” ASL is its own language and not just a modality! Dr. Sparks suggests that a child should be fluent in at least one language in order to have an option to communicate and she truly believes that there is benefit of knowing sign language even if you are already fluent in a language. Technological options to communicate include: phone captioning, video phone, and voice carry over. 

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We use context clues to know and understand what is being said and to communicate. For those with Cochlear Implants, it is hard if they miss a few words from a person communicating with them. It is not realistic for you to expect that once someone receives a cochlear implant to hear perfectly going forward.

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Always asks individuals their specific preference of how they want to communicate!

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It is the audiologists’ job to educate teachers, parents, friends, community members about remembering to wear the microphone to communicate with a child using a cochlear implant and to work with them and check over their progress. It is also important to work through the possible conflicts that may arise, from people not accustomed to communicating with a cochlear implant user.

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JOIN US FOR THE FREE H.E.A.R RETREAT: allaboutaudiology.com/retreat

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For more resources and research visit:

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All About Audiology Website 

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All About Audiology Facebook group  

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All About Audiology Instagram

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Connect with Dr. Sparks

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Home
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https://www.facebook.com/audiologyoutsidethebox/

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https://www.instagram.com/audiologyoutsidethebox/

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Listen Next/Related Episodes

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Ep. 64 -All About The AUD Student Experience with Ina Selita

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Next time on All About Audiology: 

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Episode 64 – All About The AuD Student Experience with Ina Selita

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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And this is the show where we talk about your experience with audiology, not just about audiograms and hearing AIDS and all the things that we see as the actions, but really about your experience with audiology. And another element of this show that I really think also reflects a lot of my growth as an audiologist, is learning about the deaf community, deaf individuals and what actually is the goal of audiology as a whole.

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Way back in episode 15 with Kimberly Sanzo was kind of the first time that I processed a lot of this: the goal is language, not speech, you know, and getting into the part of audiology that needs to be a little broader, that needs to encompass all the people that we can serve and not be singularly focused towards speech banana audibility, but actually what do we do with the sounds?

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So, in that vein, I am super excited to introduce you to today’s guest, Dr. Sarah Sparks, who is the founder of Audiology Outside The Box, a new audiology tele practice in DC, Maryland, Virginia, Massachusetts area. And I am loving following Dr. Sparks on Instagram and Twitter.

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Dr. Lilach Saperstein: “I’m really excited, Dr. Sarah Sparks, that you are here with us because I have been stalking you on Instagram. So, thank you for agreeing to come on the show. Welcome!”

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Dr. Sarah Sparks: “Well, thank you for having me. I’m really glad to be here.”

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LS: “I can have a long-winded introduction about how excited I am, but let’s just jump in.

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So, tell us a little about your experience, your journey throughout your life and then coming into audiology. So, start wherever you like.”

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SS: “Sure. So, as many people who follow me on social media, know that I do identify as deaf. I use two cochlear implants to hear, and I also communicate in American sign language in addition to English, but it’s not always been that way.

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I was not born deaf or hard of hearing. I actually do not know when I started to lose my hearing, but I have a progressive hearing loss, most of which happened later. And I was already fluent in spoken English before I lost my hearing. So, that’s a really important part of my own history that I want to stay up front.

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And one of the reasons for my doing that is that I very frequently encounter people who will remark, ‘wow, your speech is excellent’, or, ‘you talk so well.’ Or people will sometimes ask me why I sign or why sometimes I need to work with interpreters because I speak so well. So, I do want to go ahead and mention that I do not have the same sort of speech ability as somebody who was born deaf. That sort of person would have needed to work much harder than I ever did to develop speech in any spoken language. That’s just something that I think I should clarify from the beginning.”

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LS: “Yeah. And on that, I think a lot of people have this perception of what is a “successful” cochlear implant user, not taking into account 87 other factors of age of onset and the pre-lingual or post lingual and motivation and access to mapping and their actual nerve anatomy. Like there is no such thing as one cochlear implant model patient. Everybody has their own story.”

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SS: “Yeah, exactly. So, I did not actually become a cochlear implant recipient until adulthood. As I said, I don’t know exactly when I started to lose my hearing. By the time that it was identified, I had a pretty significant hearing loss already. So, there’s a lot of blanks that I can’t quite fill in, even myself. I did a lot of pondering during my first year of my AUD program about whether cochlear implants might be a good technology for me to consider for myself. And ultimately I did experience more of a drop in my residual hearing during my first year of my AUD program. So, that had me thinking about this even more.

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I decided to get my first cochlear implant the summer between my first and second years of my AUD program. And that started my experience. I ended up getting my second implant during my third year of my AUD program during our winter break. So, I got both of my cochlear implants while studying for my doctor of audiology degree, which was quite an experience.”

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LS: “That is something, wow! That’s a very hands-on, practical experience during the program. And also, Dr. Samantha McKinney, who is also on Instagram, @youcicanhearnow and was also on the podcast, she also got her CI (cochlear implant) during the program. So, I think it’s interesting when you can see it from both sides. But I just had a question about while you were growing up and while you were primarily using hearing AIDS, did you sign? Did you have interest in access to people in the deaf community? What was your communication modality, if you will?”

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SS: “Yeah, so, this is really interesting. I did not get hearing AIDS until much later. So, I was not one of these kids who grew up with hearing AIDS, but I did have exposure to the deaf community and deaf culture. There was a child in my class, in elementary school, who was deaf and he used hearing AIDS, he signed and he talked. So, he was really my first introduction to deaf culture in the deaf community. And I feel really privileged and blessed that I was able to grow up with the knowledge that deaf people are proud of themselves and have a culture and have a language that is unique from English.

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All of these things that a lot of people do not ever learn or do not learn in full adulthood, I was exposed to already in elementary school because of my friend. And that was a very special experience for me as a child. So, I certainly did not develop any level of fluency in ASL as a child. I started getting more serious about ASL in my adulthood, but that first encounter with deaf culture in elementary school was profoundly meaningful for me. And that friend and I have since reconnected, now that we have social media. So, I’m very happy that he is part of my life again.”

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LS: “That’s awesome. How great is that?!

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You don’t know exactly when (you started to lose your hearing), but it was towards the later part of your childhood, or I don’t know, maybe high school, college time, would you say?”

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SS: “I don’t know, exactly. I grew up in an area where good health care is not exactly accessible for everyone at all times. I grew up in Eastern Kentucky, so, I believe even now, there is not a lot of audiology available in Eastern Kentucky, but certainly when I was growing up, there was not. So, I never actually had my hearing tested as a child. I only remember one time that I had a hearing screening even, and that was in kindergarten.”

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LS: “Got it. Okay. So, then back to when you’re in Gallaudet. Did you move to DC for Gallaudet or were you also there already?”

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SS: “I was already in Washington DC by the time that I started my AUD program. I had been teaching theology and religious studies in the Washington DC area. So, I had already been here for quite some time.”

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LS: “Yeah. So, I got to visit the campus when I was considering graduate programs. It was the most beautiful campus. I was like, ‘maybe I could go somewhere where there’s grass’, haha. Because I was from Brooklyn, from New York city and I was considering it. I had a little moment. So, we did go visit the campus, but then my parents were like, ‘Four hours away from home? I don’t know about that.’ So, I ended up going to CUNY in New York city. But Gallaudet is really beautiful and they have such a unique program and so much focus on the deaf community, obviously.

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You already mentioned about how your perception of what a cochlear implant user, how they identified, changed. What were the other things that happened throughout your training that affected you?”

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SS: “Yeah, I learned so many new things about audiology, not just how to be an audiologist and how to do audiology myself, but I learned that many of the assumptions that I had about audiology before becoming an audiologist myself, were not exactly correct. So, for example, I think there is a lot of assumption within many signing communities that audiologists primarily see deaf and hard of hearing children and our days are just one deaf or hard of hearing child after another, after another, after another.

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And really most audiologists do not spend very much time working with deaf and hard of hearing children. It depends on what kind of work setting that you’re in and what your caseload is like. Most audiologists work more with adults. If we look at audiologists as a whole throughout the United States, I’m not sure exactly how it is in other countries, but in the States, there are more audiologists who work primarily with adults than with children. And you work with people with later onset hearing losses and presbycusis than with other situations.

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So, that’s something that I hadn’t really thought about before I got into audiology. Most people that I knew within the signing community had expressed a belief that primarily audiologists work with deaf and hard of hearing children. And I just hadn’t really considered it myself. But then once I got into my clinicals myself, I started realizing, ‘Oh, this totally makes sense if we think about all of the kinds of people who might need to see an audiologist for one reason or another, this definitely makes sense.’

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And within pediatric audiology, more specifically, it just blew my mind when I first found out that most pediatric audiologists don’t just see one deaf or hard of hearing child after another, after another, after another. So many pediatric audiologists end up seeing children who need to be evaluated because they have tympanostomy tubes in their ears, or they are hearing children, but they have a spoken language delay, and we need to rule out hearing as being related to that. Or there are children with different kinds of risk factors; children who have family histories, somebody who’s deaf or hard of hearing in their family. So many more of those children end up coming to audiology appointments and children in other situations. And that’s something that I didn’t learn until I got into pediatric clinicals myself.

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So, that’s something that I think is really important for people to know. There are audiologists who specialize in working with deaf and hard of hearing children, and that’s something that I want for myself in my career, but it is certainly not the case that most audiologists are seeing deaf and hard of hearing children all day.”

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LS: “Yeah, I think you’re right. That is kind of something people think about audiologists. ‘You cure deaf babies.’ No, no, no, no, no. First of all, what’s this word “cure”? There’s a lot about public perception of what audiology is and a big part of what this show is about. Haha. We’ll break some of those stigmas down and you’ve done that so beautifully in your social media posts about various myths versus what’s the truth. What’s the facts over here? Let’s get the facts.

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I’d love to hear from you about, on this vein, of what is different in audiology or what’s missing, what could be better? And what is different about your practice than most audiology practices?”

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SS: “Sure. I was a teacher for several years before I became an audiologist, so education always has a place near and dear to my heart. And eventually I would like to get into higher education in audiology. I’m actually, part-time working on a PhD so that I can meet that goal as well.”

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LS: “Of course you are. That’s awesome.”

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SS: “The education component of audiology is something that I think does not get nearly enough attention. Part of that is because audiology appointments tend to be very time-limited. We don’t have all of the time we need to actually sit down with the person and talk and give them the information that they need to know so that they can have realistic expectations with their hearing devices or so that they can understand their hearing levels or so that they can understand the implications of their hearing levels for communication.

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So, that’s something that I think is a significant need within audiology. There are of course, many other reasons that probably this doesn’t happen as well. For example, I think another thing that a lot of people don’t know is that audiologists don’t get paid based on the amount of time that we spend with a person, whether it’s someone paying through self pay or insurance. It depends on how the clinic does services, whether it’s a fee for service or whether it’s bundled services.

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In either case, it’s generally not a situation where we get paid for our time and the counseling and education component is something that we typically don’t get paid for as a service, because that’s something that generally insurance does not cover. It is something that is within our scope of practice. So, of course we can provide education and counseling to our patients and we should, but we typically just don’t have enough time because of all of the other things we have to do in the appointment that actually do get reimbursed.

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And it’s a very sad thing, I think, for both the audiologist and for the patient, because I know a lot of people in our profession, a lot of audiologists, who would really like to spend more time sitting down counseling, educating their patients or clients.”

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LS: “This is exactly the gap that prompted me to start doing what I do and that is offering actually audiology mentorship and counseling outside of that interaction. What prompted you to start your practice, Audiology Outside The Box?”

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SS: “Yeah. So, my reasons for founding Audiology Outside The Box are a few. One, is that problem of in a traditional audiology appointment and not having the time for the counseling and education. But also these types of services, when they are available, the counseling and the education are not always, or not often available to people who communicate in various ways and prefer different languages and modalities. Certainly, I think that other audiologists who offer similar services would want to provide for people who communicate in different ways, but many cannot provide direct service.

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I, myself, certainly can’t provide direct service in every possible language and modality, but I can provide direct service in either English or ASL. I can also do different modalities like SIMCOM. I know a little bit of cued speech and I’m trying to improve my skills in that so that maybe, eventually, I will be able to provide an entire appointment in that modality, but for now, I’m not able to do that. But in any case, I’m very adamant that if a person wants to see me, they should have access to an interpreter or translator at no charge to them. If I cannot provide direct service in their language or modality, or even if I can, if their own preference is to have an interpreter, instead of having me provide direct service, that’s fine with me too.

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I care about making this all about whatever helps the individual to communicate best. I have on my forms on my website space for people who are requesting appointments to tell me how they communicate best.”

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LS: “That’s so important for the communication with your patient. We’re a communication profession and yet sometimes, you know, there’s a lot of stories of people saying I called my audiologist office and that was the only way. There’s no texting. They don’t take emails. There should be some written communication option to contact your audiologist office.”

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SS: “Right. Right. One of the things that I have experienced as frustration in my own interactions with medical professionals that I’m seeing as my doctor or my provider, is that those options are not always available. Trying to get access sometimes to my own telehealth appointments with my own providers, there have been some issues with the office having my video phone number that I use for phone calls, but not having my number I use for text messages. So, in order to connect to the video call, they’ll try to send a text code to my number, but it’ll be the VP number and not the number I actually received texts at. So, there will be all of this calling between me and the office, trying to figure out how do we get me connected to this appointment?

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And it’s a huge headache. So, that’s something that I think medical offices in general could be a lot more aware of and that’s something I want to make sure does not go wrong with what I’m doing. If anybody had a problem with accessing an appointment with me, I would want to know so that I could fix it immediately.”

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LS: “That’s a beautiful mission to have for sure. And would you tell us about the telehealth part? Your practice focuses on this education, counseling and telehealth. Am I getting that right?”

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SS: “Yes, that is right. So, I can provide a lot of different services online: client education, counseling, tinnitus management, other kinds of services that you don’t necessarily have to be in a traditional office in order to provide.

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I do want to make a quick distinction between the education and the counseling piece, and specifically related to what I do on social media compared to what I do one-on-one. Certainly, education is part of what I do with people one-on-one, but providing a sort of general education about audiology topics without focusing on a person’s specific situation, that’s the part of my work that I do more publicly on social media, on the blog, on my website, through the downloadable resources that I have on my website. And also through webinars that I’m going to be providing starting in the near future.

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All of those things are available to anyone, any place in the world because they are related to general audiology topics. They do not involve providing medical advice about anyone’s specific situation. But then the one-on-one services or the group services that I’m going to be providing in the future as well, those are available right now to people who live in States where I’m licensed, which would be Washington, DC, Virginia, Maryland, and Massachusetts. Those services are personalized. The person can sit with me and talk with me one-on-one about their concerns and I will determine how I can best support them if I can. And then together we can come up with a plan about how to support their goals that they have.

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Everything is based on the client’s individual goals. I don’t think it’s my job to tell people what their goals should be. I don’t think it’s my job to try to encourage them into goals that I have in my own mind. It’s completely up to them. How do they want to communicate? What is it that they are struggling within communication and how can I support them in that?

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And it’s not just the deaf or hard of hearing person. I think that a lot of audiologists, maybe unintentionally, imply at times that the deaf or hard of hearing person is the one who’s responsible for communicating better. When in reality, all of us share the burden of communication. Everybody can communicate better at different times.

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So, part of what I do as well, is educating and counseling family members. It’s not just working with the deaf or hard of hearing person and providing tips for better communication or helping them problem solve, but it’s problem solving surrounding the entire family.”

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LS: “Definitely. I love what you say about not deciding what the goals are for your clients. That is music to my ears, haha. And I talk about this so, so much on the podcast and other podcasts that I’ve been a guest on about the medical audiological model that says to a parent, here’s the diagnosis. Here’s your next step. You need to do ABCD and the parent was never even given a moment to breathe with this information before they’re already set on some path, one way or another. But yeah, I really appreciate that.”

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SS: “And based on what you just said, something else that I think is important to mention is that I think sometimes we can, as audiologists imply things that we don’t necessarily mean to imply when we’re in those kinds of interactions with parents. So, for example, when I was an audiology student and I would get to observe some of my different supervisors and how they would counsel about deaf and hard of hearing children on the day that they were identified, every now and then I would have a supervisor who would say something to the parents like, ‘Well, sign language is an option if the cochlear implant doesn’t work out.’ “

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LS: “Um, no.”

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SS: “I think that’s an approach to counseling that some people within our professions see as being fair to ASL and to sign language, but really it’s not. I think we need to start talking with parents in ways that frame communication and language as giving the child as many opportunities as possible.

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And I think we also need to be more careful about making distinctions between languages and modalities, instead of just calling everything a modality, because ASL is an actual language. It has its own grammar. It has its own structure. It has all of the features of languages like English, French, Chinese, what have you, and other sign languages of the world as well.

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And that’s not the same as a modality like cued speech, for example. Cued speech, I’m a big fan of. I think it’s great. I think it can be wonderful for supporting literacy and also supporting understanding of speech sounds in general. But cued speech itself is not a language and that’s something that a lot of parents, I think, have never really had to think about what is a language and what is not a language. So, there’s certainly nothing wrong with giving your child opportunities that are supplemental, that are in addition to languages. But the most important thing is making sure that the child develops fluency in at least one language.”

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LS: “Yeah.”

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SS: “And that’s why it’s so important to speak of ASL and other sign languages of the world as though they’re not just modalities, they are actual languages. And they are languages that are visually accessible to deaf and hard of hearing children who have good vision and can be made accessible as well to deaf and hard of hearing children who are also blind or have low vision. There are ways to do sign language and tactile modalities and parents don’t know about that either.

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So, all of this, I think we need to be thinking more carefully about the words that we choose when we counsel parents. I think it’s extremely important that we do not frame sign language as just being a backup in case cochlear implants don’t work out.”

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LS: “Oh my gosh, I completely, completely agree. And I feel that there’s the big distinction that I think makes it so clear is that we talk about speech. And speech and language are two very, very different things. Speech is a way that we can use language, but that understanding that language is the goal, that language is then the basis of their cognitive development, their social development, there are opportunities for learning, that is the basis for so much. And language can be in lots of different forms.”

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SS: “Yeah. Along with that, I think many parents are, and again probably unintentionally, led to believe that if a child is a signer, then that child is not also going to be a talker. This is one of the reasons, but I think it’s important for the world to see people who do both. And that’s one of the reasons that I am so open myself about the fact that I talk and I sign.

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If you are fluent in a spoken language that does not preclude you from communicating also in a sign language. And there are benefits to knowing a sign language, if you know a spoken language as well, especially if you’re deaf or hard of hearing. If I use myself as an example, I cannot hear very well on the phone at all. So, if I were to use a traditional phone to make my phone calls, I would not be very successful in making those phone calls. I have used captioning on my phone before, and there are some good things about that, but there are significant delays when the person says what they’re going to say, and when the captions actually come up and sometimes they’re not accurate, they leave things out.

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So, I can still miss the message with captions in some ways, or miss part of the message and not understand everything, but I need to be able to respond to it appropriately. But if I use video phone instead where I have an interpreter on the other end, I can get the full message in ASL. And if I didn’t know ASL, I wouldn’t be able to do that.

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There are many people I think, who don’t know that you can use video phone in a way that is different than you signing and the interpreter signing. It’s called voice carry over, VCO. You can actually tell the interpreter that you want to talk yourself, but you want the interpreter to interpret for you what the other person is saying. And that’s how I make all of my phone calls. I am very happy with that set up for my phone calls, but that would not be accessible to me if I didn’t know ASL. So, that’s an example of a benefit of knowing ASL if you are already fluent in a spoken language and you’re deaf or hard of hearing. I can work with interpreters any time that I need them for any situation because I know ASL.”

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LS: “Yeah. And for parents, I think also, first of all, there’s several months from the time of identification to cochlear implant surgery, if that’s the route. And so, within those several months, what language input is being made available to them, like we’re just going to kind of sit on our hands and wait for that event and then wait for activation and then wait for their rehab to kick in. So, that’s a whole bunch of months.

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But also, what about when they’re taking their devices off when their batteries are out, when they’re at the beach and you don’t want to do the whole aqua case situation. Being fully, fully dependent on technology also leaves a child without access when that technology is not available.”

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SS: “Yes.”

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LS: “So, why do we have to be so either/or? Why do we have to be so strict about, okay, ASL is over there, cochlear implants are over there? The two shall never meet, hahaha.”

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SS: “It definitely should not have to be either/or, and that’s also an important part of what I’m doing at Audiology Outside The Box. I want people who visit my site and who download my resources, use my services, to know that communication is a whole lot more flexible than just pick one thing and go with it, because when you really think about it, everybody communicates in more than one way. Think about all the ways that we communicate every day. And even if a person is a hearing person, think about all of the ways that they communicate throughout the day.

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We might draw a picture to communicate something. We might show a symbol of some kind. We use gestures. We use body language. We use our facial expressions. All of that is part of communication. It’s not just about the mouth and the ear, even for a person who is hearing and only knows one language. So, that, I think is an important piece of this as well. Communication is a global matter. It’s not just about speaking and listening.”

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LS: “Yes. I mean, we use emojis to convey so much information. Think about that. We use emojis, we text and we even use memes that have like a whole message within an image or within a GIF or Jif, I don’t want to start a war over here. It’s okay. Hahaha. So, even in that, we kind of can try to help people understand that there isn’t so much at stake. I think there’s just a lot of stigma around signing and I hope that changes. I hope we’re a part of the change.”

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SS: “Well, yeah, certainly. I think there are many, many reasons for that. But one of them is that this is a more complicated topic than many people believe that it is. And a lot of the research about deaf and hard of hearing kids who sign and how they do with listening and spoken language skills and literacy skills, doesn’t look at all of the dimensions that need to be explored before reaching a conclusion about sign language being helpful or not. I think we need to consider when a child is first exposed to a sign language, how long they have the exposure, the quality of the access that they have. Exposure is different from access. Just because somebody is exposed to language doesn’t necessarily mean that they have full access to it. So, that’s an issue as well.”

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LS: “And that’s on both sides. Because then when you say, ‘Oh, this child had their device on for 12 hours a day, however, knowing and recognizing six ling sounds is not completely having access to spoken language. Those are two very far away things.”

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SS: “And even when someone hears and understands something in spoken language, we don’t know through audiologic testing, how hard their brain has to work to understand what was said. A really great example just came up in conversation with me and my spouse this past week, as a matter of fact. I posted it on my personal Twitter account, actually, because it was such a perfect example of this. We were having a conversation and my spouse said the word “tribal” as part of a sentence. And I didn’t catch the word at first.

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And usually when my brain does this, I don’t note every single word that it goes through to try to find the right word, because it just happens so quickly. But this time I happened to remember it and I wrote it all down immediately so that I could have this example. But, my spouse said the word “tribal” and my brain went through all of these other words, trying to figure out what’s the word that was just said. Was it treble? Was it trouble? Was it travel? Was it trifle? And then finally, I landed at tribal within a second or less and I responded to what my spouse said, and I asked, ‘Would you have known that there was a word in that sentence that I didn’t understand at first?’ And the answer to that was, ‘Nope. Nope. I wouldn’t have known.’ “

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LS: “Wow.”

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SS: “And I figured that that would be the answer, because I know as an audiologist, that that whole process happened quickly enough that if that word had come up in a sentence recognition test that we do in the booth, I would have gotten the word right. I would have gotten the whole sentence right. And nobody would have seen all of the mental work I was doing to try to get to the correct word. And that’s something that deaf and hard of hearing people do all the time. We’re constantly trying to fill in, based on the context we have, based on the bits and pieces that we do catch of what was said to try to figure out what was actually said.

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So, if we do figure out what was actually said in time for a person not to recognize that it took us a while to get it, they’re not going to have any idea. They’re not going to have any idea how hard we worked to get there. So, that’s another really important thing that we have to be aware of with both adults and children. The audiology tests that we do, give us really important information that we need to know, but word recognition and sentence recognition are not the ultimate measures of how well a person understands and processes information that they’re getting through their cochlear implants or their hearing AIDS.”

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LS: “It’s definitely not a real world situation or measure. And I think about what you said that, when people communicate with someone who has any kind of communication barrier or difficulty, the patience is so very small when someone doesn’t understand you and the never mind and the I’ll tell you later. It’s almost if somebody misses your sentence, three words out of your sentence, you’re like, wow, forget it. I don’t need to do this conversation. Cause that’s how frustrating it is when you feel misunderstood and you have to repeat yourself. So, now like take some of that energy and put yourself in someone else’s shoes, even for a moment to see, wow, it must be very hard to acquire a new language when you miss every fourth syllable.”

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SS: “So, that makes me think of another misconception that I think is worth mentioning. I spend quite a lot of time in conversations with people in different, but related professions who work with deaf and hard of hearing kids, or do research on deaf and hard of hearing kids. And sometimes, I’m among people who are not audiologists or maybe even who are audiologists, but don’t work directly with cochlear implants. Sometimes, I have found people who believe that cochlear implants provide either normal or close to normal hearing if the person already had fluency in spoken language, but that children who do not have fluency in spoken language and get cochlear implants, they’re the ones who really struggle.

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In reality, cochlear implants do not provide normal hearing to anybody. It does not matter whether the person was born deaf or hard of hearing or whether the person was already fluent in a spoken language before they started losing their hearing. Cochlear implants will come with listening challenges and expecting that a person is going to have normal hearing after getting them, regardless of their situation, is not realistic.”

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LS: “There you go. There is so much education that needs to go to the child’s teacher, to their parents, to their friends, to their community members. Anybody who has a deaf or hard of hearing child in their life, I feel like those are the people who also need a lot of guidance on what their responsibilities are to that child.”

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SS: “Yeah. I think that’s a really important part of what we can do as audiologists too, to educate. It’s important to be able to talk with the child’s teacher and tell the teacher, no, I don’t need to reprogram those cochlear implants or hearing AIDS. That’s not why the child isn’t understanding you. You need to wear the microphone in the classroom or even with the microphone, sometimes the child still going to miss things.”

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LS: “Yep. I just spoke with a really, really wonderful mom who told me that at an IEP meeting, they were being basically denied the services that their child deserved. And then her and her husband turned around and continued the IEP meeting with their back turned. And the people at the meeting were like, ‘uh, hello, we’re over here, what are you doing?’ And they were like, ‘Right, you didn’t hear us well? You missed half of what we just said. Well, that’s what our child experiences. So, if you think that wasn’t easy, now give me those services.’ And I was like, ‘Whoa, you did that? That is so gutsy.”

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SS: “Wow, that’s incredible.”

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LS: “But she was like, there’s no way to explain to people something they’ve never heard of. They don’t understand. They don’t have any experience with, unless you make them face it. And she was like, ‘that’s how we got them to understand what we needed.’ Not everyone has a mom like that, hahaha.”

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SS: “Yeah. Yeah. And it’s our job as audiologists to teach people about these things. And, I really hope that what I’m doing at Audiology Outside The Box will be a resource for people to learn how to do that, to learn how to educate the other people who are working with your child or to learn how to educate your family members. I’ve worked with kids and families who, sometimes will tell me about conflicts that they have with their extended family when they go to a holiday event or something else that’s a large family gathering. And some family members who are not accustomed to being around a deaf or hard of hearing person will assume that because a child heard one thing, that they must hear everything.

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So, if you say, it’s time to open the presents and the child comes running, but then the child doesn’t hear, hang up your jacket or something like that, sometimes family members will assume that the child has “selective hearing” and will be ignoring intentionally. So, discussing those things with children and their family members, self-advocacy on both the part of the child and the parents, that’s really important for audiologists to do.”

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LS: “Incredible. And I’m so grateful for all the resources that you’re creating. Your social media posts are so helpful. I’ve already sent them to several people and be like, check this out. Forward this. So, definitely check out @audiologyoutsidethebox and all of the resources coming from Dr. Sarah Sparks. I’m so, so grateful for you being on the show today.

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And before you go, I’d love to hear what is one piece of advice that you will give our listeners, whether that’s to parents, to people who themselves identify as deaf or hard of hearing or to students, lots of audiology students as well, who follow the show?”

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SS: “I think my best piece of advice for everyone, whether it is audiology students, audiologists, deaf and hard of hearing adults, children, family members, I think the best piece of advice I have is, do not assume anything.

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On the audiologist and audiology student side, I would encourage this regarding your clients or your patients. Do not assume that a person prefers a certain mode of communication or a certain language just because that’s the language that they come to the appointment communicating in. It’s possible that a person actually would do better with an interpreter in the appointment, whether to speak and have the interpreter interpret or to sign and also have the interpreter interpret. Maybe they just came to the appointment speaking because they assumed that since you’re an audiologist, you expect them to speak. So, that’s something to consider. Always ask people how they prefer to communicate, ask people about their concerns, their goals, and their needs.

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And then on the side of deaf and hard of hearing people and families, I would say, don’t assume anything based on advice that you’re getting. Certainly the provider that you are seeing is giving you advice to the best of their ability in most cases, but people are imperfect. Sometimes, things get communicated in ways that are not the best. So, it’s possible that you might have at some point met with a provider who has said to you or implied to you, something negative, either about sign language or another manual form of communication or about something related to your own personal goals.

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I think if you have any questions about what you were told or if something seems not quite right, you should definitely follow up with your provider for clarification or seek your own information from good reliable sources. Again, providers are not perfect. People are people and we all make mistakes sometimes. So, it’s possible that something that you have been told with the very best of intentions, might need a little bit more discussion in order for you to understand fully what is known about that topic.”

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LS: “Yeah. And it might be what the audiologist is coming from one place, but that’s not right for your family. So, it’s not necessarily that they’re wrong or that they’re misguiding, but for you and your family, that’s not, what’s going to be the best. So, I feel like it’s important to kind of just put that out there that you will have three audiologist look at the same case and make three different recommendations. And they would all be evidence-based, clinically backed, coming from their perspective of what they see as most important. And at the end of the day, that’s where the self-advocacy comes in, to evaluate, did I like what I got here or do I see another provider?”

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SS: “Yeah, for sure. And I just want to say, just to be entirely clear, I think our colleagues in audiology are really great people. I think that we all do our best most of the time. It’s a really good idea on the part of the client and on the part of the family to learn as much as you possibly can about the advice that you’re being given so that you can ask the right questions and make informed decisions for yourself.”

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LS: “Absolutely. Oh, I love that. That’s such a good place. Informed decisions and make them yourself because you have that power. Yes. Thank you so, so much for coming on the show.”

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SS: “Yes. Thank you so much for having me. I really appreciate it.”

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Absolutely visit Dr. Sarah Sparks at her website and Instagram. And the All About Audiology podcast is also an Instagram. Send me a DM. I love talking with you guys and hearing, what was your favorite part of the episode? What’s your takeaways? Any questions you have and yeah, I just love talking to you guys. It’s super fun over there. And thank you so much for listening and for sharing the show.

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And I do want to remind everyone who is listening, we also have a patreon. So, if you are able to support the show and help cover some of the costs of editing and hosting, that is at patreon.com/allaboutaudiology.

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post All About Educational & Informational Audiological Counseling – Episode 63 – with Dr. Sarah Sparks appeared first on All About Audiology.

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Today I am speaking with their Co-Founder and Executive director, Janet DesGeorges whose own daughter was diagnosed with hearing loss as a baby.  This week on the […] The post All About the Importance of the Parent-Audiologist Relationship – Episode 61 with Janet DesGeorges appeared first on All About Audiology.","duration_ms":3537168,"explicit":false,"external_urls":{"spotify":"https://open.spotify.com/episode/6gw4II2WbRb5cRnC4K45TQ"},"href":"https://api.spotify.com/v1/episodes/6gw4II2WbRb5cRnC4K45TQ","html_description":"","id":"6gw4II2WbRb5cRnC4K45TQ","images":[{"height":640,"url":"https://i.scdn.co/image/bb73a4ef724f90c44cbb261bab25b9a735773250","width":640},{"height":300,"url":"https://i.scdn.co/image/1da112257a23c0bfe3214ed817027a04c3aba106","width":300},{"height":64,"url":"https://i.scdn.co/image/c05b12a594c76f99f27d8da0cf5e01d4f6d67235","width":64}],"is_externally_hosted":false,"is_paywall_content":false,"is_playable":true,"language":"en-US","languages":["en-US"],"name":"All About the Importance of the Parent-Audiologist Relationship – Episode 61 with Janet DesGeorges","release_date":"2021-02-18","release_date_precision":"day","type":"episode","uri":"spotify:episode:6gw4II2WbRb5cRnC4K45TQ"},{"audio_preview_url":"https://p.scdn.co/mp3-preview/35944adb3d4c02bf49ee5779e4c8879769004646","content_type":"PODCAST_EPISODE","description":"Read the full transcript here In the digital world we now live in, it’s important to remember to speak to your children about online safety. 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Read the full transcript here

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On today’s episode of All About Audiology, I’m joined by two very special guests: Oren Dvoskin, a bi-lateral cochlear implant user and member of Bekol, a non-profit organization for the hearing impaired here in Israel, as well as Damian Kelman, Bekol’s CEO.

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This week on the All About Audiology podcast: 

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For more resources and research visit:

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All About Audiology Website

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www.allaboutaudiology.com

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All About Audiology Facebook group 

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https://www.facebook.com/groups/470583160143167/about

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AllAbout Audiology Instagram

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allaboutaudiologypodcast

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Bekol Website

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https://bekol.org/english/

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For the Campaign:

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https://givechak.co.il/14822/en?ref=rhhttps://cutt.ly/VjULTp0

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To contact Oren: ordvoskin@gmail.com

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Oren’s LinkedIn https://www.linkedin.com/in/ordvoskin/

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Oren’s Facebook https://www.facebook.com/ordvoskin

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To contact Damian: damian@bekol.org

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Damian’s Facebook https://www.facebook.com/damian.kelman

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Damian’s LinkedIn https://www.linkedin.com/in/damiankelman/

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Next Time on All About Audiology:

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Episode 60 – All About Online Safety – with Lisa Honold

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Transcript:
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Dr. Lilach Saperstein:
Welcome back to the All About Audiology Podcast. I’m your host, Dr. Lilach Saperstein. On this podcast, we discuss topics of audiology and how they apply to your life. We’re not just talking about audiograms and hearing aids or X’s and O’s but everything that goes along with the experience around audiology, whether it is yourself, someone you love, if you’re a student of this profession or one of my colleagues. I welcome you to the podcast.
Dr. Lilach Saperstein:
On today’s episode, I’m joined by two very interesting gentlemen, and we are going to be hearing both from the user experience part of things and also a little bit about a nonprofit organization here in Israel that is doing a lot of work for families and patients around these topics. Today I am joined by Oren Dvoskin who is a cochlear implant user and will share some of his journey and his story as well as Damian Kelman the CEO of Bekol, an organization here in Israel.
Dr. Lilach Saperstein:
Welcome Oren and hello Damian. Welcome to the show. I want to start with you, Oren, and get a little bit of your background and just a little bit of who you are.
Oren Dvoskin:
Thanks Dr. Lilach. I always say that I have a bit of an ironic story with hearing impairment. My mom is a special ed teacher, and as a young child she decided to send myself and my sister to a very unique kindergarten that had a class of both hearing impaired kids and normal hearing kids. I belonged to the normal hearing kids at the time.
Oren Dvoskin:
My hearing loss was first found only in junior high school. Long story, I was born in Omaha, Nebraska. We moved to Israel and then moved back to states. I had a hearing test in junior high, and it came out with a mild hearing loss. Now, that would’ve blown a lot of whistles and bells, but apparently not at the time and even not when I had a special ed mom. We moved back to Israel. Years went on. I entered high school and started failing miserably. We started checking what’s going on and then someone remembered that I had a hearing loss. We did a hearing test again, and I’ll never forget the look on the face of my ENT doctor when he saw the results and basically two weeks afterwards I started using my first set of hearing aids, although unfortunately my hearing kept on deteriorating from then, and I reached a level of profound deafness around the age of 30 when I got my first cochlear implant and then a second and then a third since one of them failed.
Dr. Lilach Saperstein:
Oh, boy. Okay, we’re going to get into all that. It’s such a great story. First of all, I want to say I related to you on the moving back and forth because my parents are Israeli, and then we lived in different countries in South America and then in the states, and then now I live back here now with my husband and kids. So it’s always a ping-pong, the third culture or international all of that, the languages. So I relate to that.
Dr. Lilach Saperstein:
I’m curious about you mentioned that you had the first mild diagnosis, but no one took it really seriously. Did you feel at the time that you were having any trouble hearing or that you were missing things or that’s just how it was for you so you didn’t really notice it or affect you in any way?
Oren Dvoskin:
Well, in retrospect, I absolutely knew I had a hearing loss. I suffered from tinnitus basically from the age I could remember myself. I used to have these tinnitus outbreaks, and I used to go and hide under some table in our living room in my parent’s house. Also, in retrospect, I was always this astronaut kid. I remember even back as first and second grade when the teacher would ask me a question and I would never know what was going on. I thought that’s how things are. As many other hearing impaired people, I was able to develop all kinds of tactics and have my processor in my head work overtime to cope through things until it became really too much.
Dr. Lilach Saperstein:
Yeah, and also as your hearing was deteriorating over that time. I would just say this for everyone who’s listening that any amount of hearing loss even mild which seems mild, not a big deal, actually can have a lot of implications on someone’s functioning. So that’s a question we get a lot from parents who say, “Oh, it’s maybe not so much. They can hear most of the time.” But it really can have a lot of effects socially, academically and even personality like you’re saying that you were a little spaced out and not paying attention, not on the ball.
Dr. Lilach Saperstein:
So definitely recommend taking a look at that no matter what’s going on.
Oren Dvoskin:
Yeah. Hearing loss is really tricky. You never know what you’re missing. It takes also a lot of confidence to be able to function in that environment where you’re not really sure of what’s going on and all kinds of tactics and understand that life is a balancing act and that you have to keep on top of… especially when my hearing loss was degrading, to keep on top of the changes. Every few years I had to cope with things anew. You talked about how audiology isn’t all about X’s and O’s, and I completely agree with that. The audiologists that had the most profound effect on my life were the ones that were a companion, that were able to hold up a mirror in front of me and say, “Oren, this is what’s going on. This is what you have to do. If it’s a cochlear implant, then, yeah, you should really go for that. You’re having a really tough time. I’m looking at the wear and tear on your FM system, which means you’re probably overusing it and it’s time to go on.”
Dr. Lilach Saperstein:
That also is telling me that once you had those hearing aids and you had an FM system you already were doing everything, devices and accessories and trying to do all the communication strategies to try and communicate as best as you could. Tell me a little about that process of coming to the cochlear implant, learning about it and deciding that was your next step.
Oren Dvoskin:
Like I said, it was an ongoing process of coping. Basically, exhausting the current strategies before moving on. I think it’s more of a process like you said on personality and coping wise, so I’ve been able to do interesting things in life like volunteer to become an officer in the Israeli Army. But every stage required an adaptation also of my hearing. With the cochlear implant, I think I was clinging on as long as I could to my hearing. At the time I was 30, that’s almost 20 years ago, and there wasn’t that much of an experience at least not in Israel with late onset progressive hearing loss adults. The few stories that I was hearing was just too good to be true on one hand and on the other I had enough functional hearing that I actually called the clinic with my mobile phone to set up an appointment, and they’d be like, “Hey, Oren, so you want to set a call for an assessment?” I’m like, “Right.” How are you calling me? I said, “Yeah, with my mobile phone.” Sir, call us again in half a year because your hearing is too good.
Oren Dvoskin:
So that took a while. I think the decision to go into the implant had a lot of apprehension. I even went through some consulting around that, and it just changed my life. That’s a whole different podcast that I’m sure you’ve already talked about.
Dr. Lilach Saperstein:
Oh, but I’d love to hear your take on it as well. I think just on the comment of what you said that you called and they’re like, “You hear too well,” now, I don’t know about then, but for sure now the cochlear implant is not only for completely profound hearing loss across all the frequencies. There are hybrid models and the cochlear implant can actually be very beneficial for lots of different patients with different hearing losses. I think that’s not true anymore, that even if you can succeed at having a phone conversation, that doesn’t take away from other communication challenges around high frequencies and things like that. Again, I just have to put on my audiology hat and put that out there that getting an evaluation is just getting an evaluation to see what your hearing is, what your status is, are you a candidate or not and what the options are. It’s not a decision just to go in for that if anyone is at that stage.
Dr. Lilach Saperstein:
You also mentioned about how adults is a whole different story. There is so much focus on kids, on babies and on helping that population, but there’s so much room also for adults. I think we’re going to turn to Damian a little bit and hear a little more about what Bekol does. So welcome, Damian.
Damian Kelman:
Hello, everyone. It’s a pleasure to be here with you. For your followers, probably not in Israel, it’s just that according to the Israeli Center Board of Statistics approximately 700,000 Israelis are coping with hearing loss, of course, a phenomenon that’s more common among older adults. In Israel and in the rest of the western world at least every third person over the age of 65 and every second person over the age of 75 is hard of hearing. Hearing loss as you for sure know, and I guess your followers as well, hearing loss severely hinders your ability to communicate with your surroundings, increases the chances for dementia, causes frustration, and all kinds of other consequences come along with it.
Damian Kelman:
Basically, what Bekol does is promote optimal hearing rehabilitation to reduce this phenomenon. For the last two decades and more Bekol has been improving people with hearing disabilities quality of life and welfare, empowering them, facilitating their integration to general society in an independent way and advocating for their rights basically. Bekol is the leader and considered leader in Israel among nonprofit organizations in all the field of hearing rehabilitation for people 18 and onwards. Let’s just say that Bekol’s activity has a wide impact in all fields of society delivered by a broad range of programs and services that include public awareness campaigns, diagnosing hearing loss, guidance and consultation and support and job placement, promoting an accessible public space and accessibility in general and all kinds of services we offer, either people dealing with hearing loss, their families or even caretakers and all kinds of people providing services that need to know how to interact with people with hearing loss in a more effective way.
Dr. Lilach Saperstein:
Wow. Thank you both for all that information. I know that the majority of the listeners of the podcast… Actually there is no majority. They’re all over the world. My stats lights up the whole map. I love every single one of you listeners and from all the countries around, Asia, Europe, Africa, in South American, North America. Everywhere basically. I don’t think there’re any scientists in Antarctica listening to the podcast just yet. But basically the listeners are international. I wanted to spotlight the work that you are doing and the experience that you’ve had, Oren, with an organization. What a big difference it can make not only for the personal experience of the people who are involved, but how you are then making lasting impactful change on systems, healthcare advocacy and laws and legislation like you mentioned.
Dr. Lilach Saperstein:
Wherever you are in the world listening to this, check out your local organizations and see what’s happening, how to get involved and what you can get and what you can give. That’s the power of this kind of community. That’s incredible.
Damian Kelman:
It works both ways. I absolutely get it. I’m curious to hear you talk about your personal experience as well because that is exactly what we do at Bekol. We fight for the rights of people with hearing loss and with hearing impairments in all kinds of environments including the academic field. I want to make sure you get the most out of the things we’ve accomplished. If you’re going to be using the different services you’re entitled to in a good way, and you’re eligible to, either if it’s cochlear implants or hearing aids or accessibility services, that is the whole story of Bekol. That’s what we are there for.
Damian Kelman:
Actually we understand. I guess everyone with an interest in audiology understands as well that you shouldn’t work harder than you have to. If there is technology and there are services allowing you to make the most out of your experience and to get a starting point on equality of opportunities from the best place we can provide, you should use them.
Oren Dvoskin:
I’d like to say that is a lot, and we call that impressive stuff. I want to share from my personal perspective, maybe not that much at Bekol, but we talked in endocrinology about cochlear implants, about FM systems. In the end, there’s a person that’s coping with all of that, and part of being a person with a hearing impairment is you need that support. I’ve been a member of Bekol since the day it was founded. I used to be a board member of Bekol for several years. My experience with Bekol was first of all that it was my first touching point with other hearing impaired people. I barely met anyone else with a hearing loss beforehand. The first few years when I was hanging around Bekol were probably my best years socially.
Oren Dvoskin:
I suddenly had lots of friends. I used to go out to parties, and we used to go out together. I felt like a plant needs to have or tree needs to have roots in the right place in order to bloom, and that’s one of the things that I found in Bekol. From then it also progressed when I met my partner who is now my wife. Then we went to one of Bekol’s courses that they organize. It’s an immersive course about coping with hearing loss from all kinds of different aspects. Bekol was also one of the first places that I heard about the cochlear implant through a lecture. They hold these amazing events. They have a singalong event for hearing impaired individuals.
Oren Dvoskin:
People with hearing loss sometimes are afraid of singing because it sounds all messed up, and they’re not familiar with the words and the song. Bekol holds this event that’s a singalong that’s accessible for people with hearing impairments that have balloons in the audience and of course captions. It really empowers people. This is on the personal side, but also on the advocacy side, the organization has done amazing things. I paid for my first cochlear implant. It wasn’t in the Israeli health basket yet. Because of Bekol’s fight to improve legislation, then my second hearing impairment was financed by the Israeli healthcare system. There are now mandatory captions on all TV systems. They now help reduce the costs for hearing aids. They passed extremely important accessibility laws. It’s maybe contrary to being hearing impaired, but I’m the head of marketing at a cybersecurity company.
Oren Dvoskin:
Most of my day I hold calls just like these speaking with people from all over the world, and I’m using now an accessory device that I received through the workplace and lots of other accessory devices. One of the reasons I could receive that was through advocacy from Bekol. That’s just a bit of examples from this very wide breadth of activities that Damian described.
Dr. Lilach Saperstein:
We also have so many parents who listen to the show who have young children, babies, they’re just learning or they’ve been dealing for the last several years with their babies and children. They often have this question of what will my child’s opportunities be? Will they have friends? What about identity? All these questions that parents have in general but specifically in this topic about when we worry about our kids. I think it’s so important to hear that, that maybe the thing you’re afraid of is actually their ticket for connection and community and friendship. Going to advocacy workshops with your wife, I love that. It’s something-
Oren Dvoskin:
I totally agree, advocacy, especially for cochlear implants. Basically after I got my first CI, I bootstrapped cochlear implant advocacy in Israel. In the states, it’s very well organized, maybe too organized by the different CI companies. In Israel, we’ve got along on our own, and then we’re helped by organizations like Bekol. Just this international flavor that you talked about, I found myself consulting through cochlear Europe on how they could jumpstart CI advocacy in different regions around the world. One of the important components of doing that is teaming up with local NGOs like Bekol that would exist in different places, and there are lots of other stuff.
Oren Dvoskin:
I participated a few years ago in the deaf Olympics in the road cycling events, so totally different community experience, gathering people from all over the world. My experience as an individual with a hearing loss is that you have to connect with those communities. It gives you so much empowerment to cope with your daily life.
Dr. Lilach Saperstein:
I was just speaking to a student who mentioned that… a university student who mentioned that she didn’t want to go to the office of disabilities and get transcription and the classes or preferential seating or whatever else she could get. Well, that’s not relevant this semester and this year online, but anyway, captioning for Zoom, all the things that she was eligible for, and she didn’t want to do it because she was so embarrassed. She was worried that it was going to affect the perception of the teachers on how they should treat her.
Dr. Lilach Saperstein:
We had a conversation about the teachers will have a perception that you missed a question, that you’re not participating, that you don’t know what’s going on. That’s going to be their perception without it. When you do disclose this and get the help, it will be a different conversation, more in your benefit. So, yeah, we had the conversation a lot.
Dr. Lilach Saperstein:
Yes, please.
Oren Dvoskin:
I want to add on that that I think you have to have a really positive, even combative, approach. It took me twice to finish the Israeli officer’s course, the Israeli Army officer’s course. It took me a couple of years extra to finish my BA degree, and I sometimes still wake up in the middle of the night dreaming that someone audited their grading systems and found out that I actually did skip several courses. In every step along that line I unashamedly did the maximum I could leveraging organizations like Bekol and other organizations to get whatever shortcut and whatever benefit that I could just to get a slightly better starting point in whatever path I chose.
Oren Dvoskin:
People that have a hearing loss, it’s harder. It might take twice as long. You might fail more. You have to use every resource that you can and even maybe have some hoops in doing that in order to succeed sometimes just as much as your regular hearing impaired people. Don’t be ashamed about that. Bekol and Damian, they’re partners of yours. Find how they can help. Be very diligent about that.
Dr. Lilach Saperstein:
I remember the quote that we say sometimes for kids is your child should have the opportunity to ignore you on purpose. That they should hear you enough to say, “I’m not listening.” I have one question for you, Damian, as well about the organization. A lot in this world and the conversation we have here on the podcast often about deaf culture and deaf identity and sign language as a modality of communication and community. In what ways do you see collaboration?
Oren Dvoskin:
I’ll say the only disadvantage… Sorry, Damian. I’ll say the only disadvantage of doing that is that it’s harder afterwards to skip classes or if the teachers do see you handing over the FM and sitting in the front row, and you’re not there, they’ll say, “Hey, all my life I wore my shirt that had a place to put the FM unit, and you weren’t here today.” On the other hand, if there’s a class that does have mandatory participation, then you can say, uh-uh, that’s too hard for someone with a hearing loss. I need to be able to chill out once in a while. Sorry, Damian. Go ahead.
Damian Kelman:
Yeah, I’d like to add that also from my personal perspective as a hearing person and from the cost perspective it’s super important people are able to fulfill their potential and live their life they way they choose to. That’s one of the reasons we work for all kinds of accessibility means in all kinds of different towns let’s say. Bekol started its path as the organization for hard of hearing people in Israel and deaf people in Israel, and it is the Israeli representative of that group of people for different international organizations and forums including the World Health Organization. But for several years Bekol has included in its agenda working towards accessibility and equality of opportunities for all kinds of different deaf and deafening and hard of hearing people either if its by sign language and accessibility in translation to sign language and captions and all different kinds of accessibility means.
Oren Dvoskin:
I think you asked maybe about deaf versus hearing impaired. I had this real amazing story. Like I said, I represented Israel in the summer deaf Olympics back in 2013. It was very interesting. Sorry. We talked about deaf society versus hearing impaired, and I had an amazing experience since I represented Israel in the summer deaf Olympics in 2013 in the road cycling events. I don’t speak sign language. I tried learning a bit, but I forgot. It was very interesting because I found myself at a disadvantage point there. That was one thing, first of all because you have to disconnect everything, all the hearing devices, and without the implants I can’t hear anything at all. My coach would have to write to me on this chalkboard instructions.
Oren Dvoskin:
Then one of the really funny events I had was in the closing ceremony. I started walking around, and I met an athlete from Saudi Arabia. He ran up to me all signing and happy and all. He’s asking me in sign language where am I from, and I knew how to answer that. I said, “Israel,” which is the sign of a beard, a long beard, like hair sole. He’s signing the beard, “Israel, yeah, cool,” and signing, “great.” And then he kept on speaking and speaking, and I said, “Wait, wait, wait. I don’t speak sign language. I tried signing.”
Oren Dvoskin:
He looked at me, and he said, “Oh, are you hearing impaired?” Then he signed hearing impaired, and I said, “Yes.” And then he said, “And you’re not deaf?” I said, “Yes.” And he said, “And you don’t speak sign language?” I said, “No.” He said, “Go, go away.” Then I found myself sitting on the sidewalk with some of the Japanese athletes because apparently they have a completely different sign language system, and I couldn’t find anybody else to talk to besides them, so I joined the Japanese group.
Oren Dvoskin:
It was an amazing experience. I visit the states, and sometimes when I visit the states I sometimes feel that I’m not politically correct that I don’t sign. People see the implants. I walk up to Starbucks, and then the cashier starts signing. I’m like, “Whoa.” It’s unfortunate that I haven’t learned it, but I think the balance nevertheless of connecting with your hearing impairment is extremely important.
Dr. Lilach Saperstein:
Definitely. So we are going to have a link to your crowdfunding campaign in the show notes as well as a full transcript of today’s conversation as with all the podcast episodes. I just wanted to go back a minute to what we were talking about identity and with that spectrum of the deaf and hard of hearing and hearing impaired experience. In fact, there’s a lot of pushback many times when you ever use the expression hearing impaired because people will say that’s ableist, and now you’re saying there’s a problem, there’s an impairment, even hearing loss, that there’s a loss here. This is a medical model.
Dr. Lilach Saperstein:
I kind of always want to just listen to everyone who comes from wherever they’re coming from. If people say this is my cultural identity, the language that’s in my home and community and there is a very strong deaf identity, then that’s one experience. If someone was a late deafened adult, that’s a totally different experience. Someone has high frequency hearing loss, someone has low frequency hearing loss from mild to profound. That’s why I think that the audiology world, the experience is so varied, and we have to move away from some of the shaming on both sides of if you sign, you’re abusing your child, if you don’t do a cochlear implant, you’re abusing child. What? Everyone calm down. We want to know what the options are and then do what’s right for you, for your family.
Dr. Lilach Saperstein:
I really appreciate that you shared so openly, Oren, about that experience of being isolated and the other experiences of being embraced. Everyone has to find a place in life in every context, so this is one of those things that I hope to bring with the podcast, a little more acceptance, inclusion and calm down about the terms. That’s something that’s a goal for me.
Dr. Lilach Saperstein:
I’m really hopeful that there will be more efforts for accessibility. One of the big stories that is always about Zoom and are they going to provide the automatic captioning or not. Are they going to provide that at a cost or is it going to be free for everyone? This is one of those topics that I’ve been following the story. From every perspective, people are kind of trying to do as much as they can to help and see how life can be more connection, more conversation, more relationships because that’s the ultimate goal.
Dr. Lilach Saperstein:
I’m so grateful to have you today, and if you have any advice, I’d like advice from Oren and advice from Damian for any of our listeners about the world of audiology wherever they area.
Oren Dvoskin:
One of the things that’s also very unique about Bekol is that it was founded by and for many years managed also by the board of directors and their upper management by hearing impaired individuals. So the first three founders were hearing impaired. They were CEOs. The first two CEOs were hearing impaired individuals for many years. You’d never see anyone… All the board members would be hearing impaired individuals.
Damian Kelman:
[inaudible 00:33:00]. Sorry for interrupting. Because chairperson and all board members are hearing impaired people, members of the organization, we should probably add that Bekol is an organization of members first and foremost.
Oren Dvoskin:
So it’s a self-help organization. One of our board members is also actually my CI surgeon, Professor Michal Luntz, who is also a bilateral CI user. However, the landscape progresses, and the last two CEOs of Bekol have been professional. Damian’s predecessor, Vardeep, and now Damian are professional CEOs. We see the landscape is still becoming more challenging especially now with COVID. Bekol like many other NGOs, not just in Israel, but around the world actually operate different projects for governments or operate projects that depended a lot on having a face to face audience.
Oren Dvoskin:
That has also created challenges for the organization on one hand and on the other I can share that someone with a hearing loss, COVID has been tough. Suddenly everyone is wearing masks, so it’s hard to lip read. Everyone is using Zoom, and suddenly there aren’t captions in Zoom. There is still a lot of advocacy that needs to be done. People are feeling alone during the pandemic coping with their hearing loss alone, and then services from organizations like Bekol are much more needed but on the other hand like everybody else, they’ve been impacted dramatically by the situation.
Oren Dvoskin:
Now as a long time board member I can say that Bekol has always managed itself financially very, very well. But these times are challenging. We’ve been able to work through 2020 very well, but now have reached a decision that we need some help. We’ve launched a crowdfunding campaign. I’m again from marketing and a cybersecurity company, so I started telling, “Damian, hey, we should do some crowdfunding.” I saw another organization that it worked well. I sort of helped push them to that saying, “Hey, at least we’ll return the investment.” So far it’s been an impressive success.
Damian Kelman:
We need as much help as we might get because as Oren said the needs on the ground are only increasing and COVID-19 has a big part for that for sure. Challenges and difficulties have been going all over the roof. We have also had to adapt our programs and services to the new reality, to the new normal. The hearing aloud courses Bekol provides as Oren as mentioning before have in turn moved to the Zoom environment and all kinds of different services of guidance we provide has also moved mostly to the cybernetics field.
Damian Kelman:
We definitely need as much help as we might get since we can get for next year to keep providing because we understand the situation is not going back to what we knew before not only in the minds of the pandemic but also in the minds of the political crisis we’re facing in Israel. People all over the world probably don’t know, but we’ve been through a year without a government budget. That makes things very difficult for organizations like us providing the government with services that they enable other providers to do because basically they need the organizations to be there on the ground and helping people throughout their needs, their previous challenges and the new ones that we’ve dealt with in the last few months because of the pandemic.
Oren Dvoskin:
Thanks for that. I think this call is very interesting since we have four different partners here. We have you as a professional. We have Damian as part of a support organization. I have me as the user. And we have technology on the call. Every person needs to find the right balance of what works for them for optimizing all these parts in order to achieve whatever you want to achieve. Lilach as the care provider, everyone else who’s listening on this call, please get out of your box. Get out of your element. Get out of your comfort zone. You’re so significant in holding a mirror in front of your patient and showing them where they can go to and taking them along that path.
Oren Dvoskin:
A hearing aid to work well doesn’t have to be tuned perfectly. It has to help. It doesn’t always have to catch all the sounds. Damian from Bekol, you saw how we just in this conversation how organizations like these can connect the dots and empower people. You have to understand that you’re doing lots of activities, but then look at the needs of these specific people and what they need and what they want from you and work together. Myself as a user, my personal approach was always make the most out of the technology, but I could never do that without the help of you guys on this call.
Oren Dvoskin:
It’s all about a synergy and working together and in times like these during COVID, please do reach out and help your local organizations. It’s extremely important.
Damian Kelman:
Absolutely. I want to relate to what Oren was mentioning. One thing we’ve learned especially during the last few months is that it takes a lot of raising awareness among the general public as well. That’s something we can all do from our different angles and perspective. If you’re in this world of hearing loss and audiology, you can probably put out the message of how we can all of us relate in a way that’s more effective in lines of communication. Let’s start with the basic, the most basic, to allow people to understand what you have to say, to provide an environment that supports the possibility of listening or getting the message with the technology, without the technology. We all have learned the hard way the last few months how badly a situation which is medical in the first place that urges all of us to wear masks in the moment turns the reality backwards for people using technology for even years and decades.
Damian Kelman:
So it’s our responsibility all of us to make the most to enable communication each and every way we can.
Dr. Lilach Saperstein:
Thank you, Damian. I’m so grateful to both of you for joining us on the podcast today. If people want to reach out to you or be in touch, I think you’re both on LinkedIn. Is there anywhere else you would like to be linked anywhere? Instagram? That’s where I hang out.
Oren Dvoskin:
I’ll be glad to be contacted on LinkedIn or email. You can publish my email in the show notes. I’m always glad to help. Or Facebook. I’m always glad to speak with other adults or parents of children. I’m busy, but I’m always glad to help even for a short word. Please do reach out.
Damian Kelman:
As for Bekol, you can either go ask or just email me directly via LinkedIn or directly by email, Facebook as well, whatever is comfortable for you.
Dr. Lilach Saperstein:
Excellent. I’ll have all that linked in the show notes. Thank you so much for being a listener of the All About Audiology Podcast. If you can leave a review on iTunes or wherever you listen to your podcast, that is so, so appreciated. Like I mentioned, I do hang out on Instagram at All About Audiology podcast, and I’m loving when you tag me, when you tell me you’re listening. I recently had a listener from Australia who said she had a four hour drive, and she listened to four episodes back to back. So thank you for listening, Genevieve. I would love to hear from you. Thank you for listening. This is the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein.

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The post All About Advocacy Organizations – Episode 59 with Oren Dvoskin and Damien Kelman, Bekol appeared first on All About Audiology.

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Read the full transcript here

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Today’s episode revisits the subject of Tinnitus, a highly debatable and often requested topic. 

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This time, I am joined by Tinnitus expert Dr. Ben Thompson, who will be sharing his tips on how to deliver help and support to those suffering from this condition.

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This week on All About Audiology: 

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For more resources and research visit:

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All About Audiology Website

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www.allaboutaudiology.com

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All About Audiology Facebook group 

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https://www.facebook.com/groups/470583160143167/about

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AllAbout Audiology Instagram

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allaboutaudiologypodcast

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Dr. Ben’s YouTube Channel

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Ben Thompson, AuD

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Dr. Ben’s Website

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PureTinnitus.com

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Mentioned in this episode:

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Listen Next/Related Episodes

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Next time on All About Audiology: 

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Episode 59 – All About Advocacy Organizations – with Oren Dvoskin and Damien Kelman, Bekol

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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And this is the podcast where we talk about audiology and how it impacts your life. It’s not just about hearing tests or hearing aids or cochlear implants, or all those things that we do talk about. What we really want on this show is to talk about how it affects your day-to-day life, your relationships, access to communication, education, all those things that really matter. So, it’s all about you.

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And today, on the podcast, we are revisiting one of the most requested, debated, spoken about topics, and that is tinnitus. Ringing in the ears, buzzing in the ears, all those sounds that can actually be really, really bothersome, and for some people, can really affect their functioning. So, today we are joined by tinnitus expert, Dr. Ben Thompson, from puretinnitus.com. He’s from California, and he is going to share so many great tips and a lot of information about how to deliver help, and support, and services for those who are suffering from tinnitus.

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We’re going to be diving into this topic and I do want to remind you that we’ve had two previous episodes all about tinnitus already. So, we’re kind of hitting this topic from all angles. You can go back and listen to our interview with Dr. Kelly Dyson. That was episode number 35. You’ll find that in the show notes. And we also had Joey Remenyi, Australian audiologist and author of the book, “Rock Steady” just recently in episode 54.

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Well, without further ado, we’re going to dive right in. 

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Dr: Lilach Saperstein: “Welcome Dr. Ben.”

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Benjamin Thompson: “Thank you Lilach for having me. I’ve been following your podcast for a while, and I want to say thank you for everything that this podcast is doing for families, for the audiology profession, and for anyone who’s looking to learn more and take a deep dive and get the expert opinion or perspectives about all these great topics.

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Thank you.”

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Dr. Lilach Saperstein: “Thank you. I really appreciate that. It is so fun, such a labor of love. And I do just want to put this out there. We do have a patreon and it would be so appreciated for anyone who would like to support the show. That’s just a little plug right there. It’s patreon.com/allaboutaudiology and there’s some cool perks on there too for some of my favorite listeners. I’m only kidding. I love you all. So, Dr. Ben, tell us all about how did you come into audiology and then tinnitus in particular?”

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Benjamin Thompson: “Definitely. My path to become an audiologist started with my mom, growing up in our family. My mom has been a speech language pathologist for about 30 years. And as I was growing up, she of course wanted her son to have a good, safe, healthy profession. And we were throwing around some ideas and she said, “Hey, as an audiologist, this could be a good path for you. Have you considered speech pathology?” And I said, “No.” She said, “Have you considered audiology?” I said, “What is that?” So, we looked into it more. And I started to connect with preventing hearing loss by using ear plugs, researching loud noise exposure and tinnitus.

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And then I applied to graduate school and I got accepted. Went to graduate school in San Francisco, California. The big move out West from the East coast where I grew up, moved out to California and started this new chapter of my life. Part of that journey then allowed me to be in this program which was new. It’s University of the Pacific program in San Francisco.

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We were the first class of a new program and that has pros and cons. One of the pros that I took from it is that the curriculum, the classes, the coursework, it was strategically chosen to give new audiologists the best advantage in the market in the profession. So, classically programs have courses that have maybe changed slightly, but more or less the same for the last 20 years in the audiology profession.

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So, being in this new program, the differentiator for me, what I learned was that we had two full semesters of tinnitus that were taught by the lead audiologists at University of California, San Francisco medical center, UCSF, which is a well-known institution, historically ranked one of the top 10 hospitals in the country and a great audiology program.

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To be taught by a clinician instead of just a researcher was an incredible experience to learn about tinnitus. I connected with the tinnitus counseling and tinnitus therapy component because it was person to person and it involved the psychology. Classically as an audiologist, we rely on technology. And if anyone who is listening to this that is an audiologist or an audiology student, you know, there’s lots of our day where we’re waiting for hearing aid software to load or relying on technology or where we have a technological malfunction and we have to troubleshoot and fix it.”

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Dr. Lilach Saperstein: “You have to plug it in, plug it out, take it out, put it back again.”

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Benjamin Thompson:  “Exactly. So, an audiologist needs technology to get the job done. What I found in tinnitus counseling is that it’s more of a holistic approach on focusing on overall wellness, getting into the fundamentals of psychology. And for me, that on my own personal journey in life, that connected to me very much. So, that’s why I pursued it deeply. 

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Fast forward a few years after doing research into, how can I use my skills of tinnitus? Because I had been trained extensively in tinnitus. How can I use that to share it to the world or to share it to the online community?”

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Dr. Lilach Saperstein:  “Okay. Cool. So, I think exactly what you’re mentioning is that audiology has so many different directions that you can go within the field. So, for all of our students who listen, you know, just because you had to do a whole two semesters of one thing doesn’t mean that has to be your whole career. There’s educational audiology, there’s fitting hearing aids, there’s cochlear implants, there’s medical, there’s working for the companies and doing research. There are so many things you could be doing. What about podcasts? And what about online courses? And what about reaching more people in a very specific way? That’s within tangential, outside of the actual medical model establishment.

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So, I think we can agree on that. And I also love what you said about the holistic approach. Because it is about the whole person and that’s what this whole show is about. So, I’m really glad to hear more about the work that you do.

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And for people also, we spoke about this with Joey as well, that if somebody is suffering from tinnitus, we don’t just say, “Okay, let’s try and only look at your ears.” And then it’s a ear thing.

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It’s a brain thing. It’s a stress level thing. It’s a whole body, where you came from, traumas, experiences. We’re helping people, we’re treating people. So, I appreciate that approach.

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All right. So, tell me more about what happened next when you were saying, let me bring this online. How did you approach that?”

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Benjamin Thompson:  “It started when I was in the residency, the externship at UCSF medical center in San Francisco. I had an appointment for 90 minutes for a tinnitus consultation. And this was a center that was well-known. And I was reviewing the case before the appointment. And I saw that this patient was from Lake Tahoe, which is four hours away. And they had an appointment in San Francisco. So, I thought, okay, are they actually from Lake Tahoe or is that just their address? They get to the appointment, they start the appointment. And they confirm, yes, “I live four hours away. I drove here for this appointment. That’s how much it means to get help for tinnitus.”

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And they went to their primary doctor around Lake Tahoe, which is in the mountains in California, four hours from the coast. They were referred to the ear nose, throat, doctor. And both of them checked their ears. They said, “Well, there’s nothing physically wrong with the ears, so there’s no cure. I don’t have anything I can do for you. So, please get out of my office. That’s all I have for you. I’m sorry.”

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Dr. Lilach Saperstein: “Your seven minutes are up. Haha.”

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Benjamin Thompson: “That’s just their background. That’s just their training. It’s no fault of their own. It’s just the system and the education, perhaps, that these other doctors don’t have, that an audiologist can have with the right training.

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So, that patient does what anyone today would do who wants help for anything. They go on Google or they go on YouTube and they searched “tinnitus doctor”, “tinnitus help”. Eventually they found the center in San Francisco. So, they saw me for this appointment. We had the counseling session for 90 minutes where I educated them on what’s going on, what they can do. How does their hearing impact it? What other factors related to their stress, their psychology, their nervous system are taking a role in this? How to use sound therapy, creating an individualized plan and how to move forward. And they felt relieved. They felt satisfied. It was worth them driving four hours, spending $300, having the time and actually implementing what’s next.

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They left that appointment satisfied. And at that point, I realized that the skills I was developing in my passion in this field of tinnitus counseling and tinnitus therapy, mixed with my digitalm millennial mindset of using tele-health, using the internet to spread a message far and wide, that tinnitus counseling was the easiest and best way to create an online business, to create an online therapy, online telehealth project in the field of audiology.

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And that was the seed that was the inspiration to start pure tinnitus. And that was a few years ago. I launched pure tinnitus about one year ago with a YouTube channel to build an audience and share the message of how exactly to get to the root causes of tinnitus and explain all that can be done.

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That’s basically my story. So, I’m happy I can share that with your audience. Thanks guys.”

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Dr. Lilach Saperstein: “Absolutely. And we’re also going to have links to your YouTube channel and a full transcript of today’s episode as always, will be at allaboutaudiology.com. So, tell us a little bit about what are the different topics, the videos that you have, the ones that are the most popular or maybe the ones that get the most comments. Haha.”

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Benjamin Thompson: “Definitely. And that’s a great question, because for anyone who’s interested in creating videos or blog content or a podcast, we want to of course create something that’s fun for us. But more importantly, we want to create something that people actually want, people are actually searching for, it would actually benefit them, give them value.

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So, for people with tinnitus who are looking for answers, there’s a large number of people who are asking, what is this? What am I experiencing? My most popular video thus far has been playing the 10 most common sound types of tinnitus: ringing, buzzing, roaring, whooshing, pulsatile, clicking, the steam coming from a train, the teakettle, and all these different sound samples, so people could match the quality, not the loudness, but the quality of their tinnitus. And they would comment on the video below. So, that was really powerful for people because tinnitus is invisible. It’s in the head. You can’t see it. No one else can hear it. You talk to your family and friends, people say, “Sure, I have it, but it’s not a problem” for them. So, to have a resource where they can realize, okay, this is real other people experience this and then now what.

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That’s a really popular video. The topics that I’ve focused on that I feel are the most valued to the tinnitus audience are talking about stress related to tinnitus, anxiety, the nervous system, the physiology and the physical body, and how a message from the body of feeling tense or anxious, that sends the message through the nervous system to the brain. And that keeps us in the fight or flight response, which is why many people are challenged by tinnitus. Additionally, topics around hearing aids, hearing devices, sound therapy, how to use sound therapy. Those are the main topics that get the most interest on my YouTube channel, which is called BenThompson, AUD.

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Dr. Lilach Saperstein: “Awesome. When I think about explaining tinnitus to someone, to the uninitiated, sometimes the analogy of chronic back pain or stress and tension in your shoulder area. That’s something that pretty much everyone experiences when your shoulders are up and you’re tense. And then it’s like, Oh, you had a good day or a bad day based on how your shoulders are feeling.

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That’s something that is kind of common. Everyone gets that. But then it comes and goes and then you stretch or swim or do your daily activity and you don’t feel the pain anymore. But for someone who’s really struggling with chronic pain, you want to investigate, is there a medical thing going on or is it more of the stress and mindset. So, I think understanding what tinnitus is and how it works, how it can be effective is so important and so powerful. So, those videos must be so well received. That’s why.”

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Benjamin Thompson: “Yeah, thank you. And I have an E-Book where I give simple strategies for tinnitus. One day, a few months ago, I got an email and the email said, “Dr. Ben, thank you for creating this E-Book. I read your E-Book. I am an ear nose, throat doctor in Southern Africa. And I have patients in this rural health clinic that come to me with tinnitus. And I don’t have any tools to give to them. I feel bad for them. So, classically I’ve been prescribing them anti-anxiety/anti-depression medication and that’s all I thought I could do. Now, after finding you on YouTube, after reading these strategies, I’ve been implementing them with my patients here in this rural health clinic. And I don’t have to give them anti-depressant/anti-anxiety medication. Now I have some other tools that I can use, which are more holistic or more mind/body approach as to just numbing the psychological effect of tinnitus.”

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So, in terms of the reach of YouTube and how there’s people all over the world in places I’ve never been, you’ve never been who have the same problems, they speak a different language, maybe the same message can be used. So, for me, that’s one of the most influential moments I’ve had on this journey of an ear nose, throat doctor in Southern Africa reaching out to me saying that what you’re providing has helped my patients, people that I’ve never met, people who I don’t even speak the same language as.”

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Dr. Lilach Saperstein: “That’s the best feeling. And I want people out there to know that when you email or DM or send a message to someone who you liked what they said or what they wrote, or even comments on videos and Instagram, it really makes a difference to the creators because we work really hard. We put a lot into it and then to get that kind of feedback that it’s actually making a difference, that’s very meaningful.

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So, in the spirit of the holidays, of all days and gratitude and spreading positivity, DM, and email, your favorite people that you watch or listen to their things, just saying.

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That’s so cool. That’s really fun. I feel the same when I get those messages too, from parents, because the main focus of the things that I’m doing online are mostly for parent education, who all of a sudden have a new baby. They’re identified as deaf or hard of hearing, or they have lots of testing. They don’t have the full answer yet, the full scope. And they’re just like, “audio, audio what is this to all this new stuff?”

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So, I hope that’s where a lot of people have come into my world. And yes, I can say those messages really mean the most, especially when you send me pictures of your babies, keep doing that. Hahaha.”

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Benjamin Thompson: “What kind of far countries that you never thought you would visit or connect with, are reaching out and saying, hello?”

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Dr. Lilach Saperstein: “Oh, all over. Pakistan, Thailand, a couple of students in Norway, a super cool mom in New Zealand. Really fun. I love it. And because I’m in Israel, I kind of do my evenings for North America. I’m kind of right in the middle of all these different time zones, it works out. It’s fun. 

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Okay. So, speaking of babies and children, can you tell us a little bit about tinnitus in pediatrics or for children, because I think this is another topic that gets very little attention. And people will say, what do you mean? Not everyone experiences this? And then, a teenager will say, “I’ve had this ever since I can remember.”

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What can you tell us about that?”   

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Benjamin Thompson: “I work with pediatrics right now in an in-person clinic, as well, part-time. And when I was at a medical center, working with kids, working with pediatrics, what comes to mind is that when a child is between six, seven, and eight, they start to develop the language and the self-awareness that they can verbalize what’s happening in their body.

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And, often, this is for children who’d have a late onset or develop hearing loss after the newborn hearing screening in one ear. I saw this multiple times where around seven years old, they start to tell their parents, “Yeah, I can’t hear you on that side.” And after a few times consistently the parents say, okay, we should get that checked out.

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They’ve likely had a hearing loss in that ear for years, but around that age, six, seven, eight, for most normally developing kids, they’re able to voice what’s abnormal or what seems to be off in their system. And I would say it will be a similar process for a child with loud tinnitus. Again, around that age, they can just voice what’s happening in their body better.

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And for someone who has tinnitus that may present as, “Mom, dad, I hear a noise in the ear or I hear something.” And of course, if a kid says I hear something that doesn’t mean a lot. Overall, it’s pretty rare for a child who’s under 12 years old to be adversely affected by ringing in the ears. Most children with a hearing loss probably do have ringing in the ears, but when they’re wearing hearing aids, it’s not necessarily noticeable. It’s hard. It’s not a well understood topic. It’s not a well-researched topic. It’s very subjective. It’s hard for a child to really describe the intricacies of hearing a sound that’s not physically there. We can’t measure it with a test.

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Overall, I would say, the most common expression for a child is that if a child is entering teenage years, they start to develop social anxiety or depression. And if they latch on to the symptom of tinnitus, which is likely caused by some degree of hearing loss, if they latch onto the tinnitus being a reason why they don’t have energy, a reason why they’re not getting out of bed, why they want to stay home from school, it’s usually a sign that there’s more underlying conditions going on.

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So, that would be my advice that if someone is a teenager going through challenges saying that the tinnitus is really loud, it’s bothering them, they’re not happy because of it, they wish it was gone. Go deeper. And maybe that’s with a counselor. Maybe that’s with the psychologist, maybe that’s with an ear, nose, throat, or audiologist doctor. Go deeper into what else is happening in that child’s life and realize that the sound itself isn’t likely the cause of stress. It’s something deeper.”

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 Dr. Lilach Saperstein: “It’s hard with kids. So, I have a story for you. Just the other day, on Hanukkah, we had a lot of donuts in the house and my six year old ate many. I don’t know if she ate four or seven. I was not around, #greatparenting.

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I just came and there were less than there were in the box before, but I have three kids. I don’t know who ate what. Long story short, the next day, she had major belly pain. And my husband, the doctor, you guys know him from previous episodes, he was examining her belly and he got actually very concerned because of the type of pain she was having and the specific spot. He was like, “Actually, I think we need to check you out, is this appendicitis?”

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And I was like, “No, it’s a belly ache from all the donuts.” So, we were having this debate.  And that I think is common among children where you don’t know, are they just saying they don’t want to go to bedtime or do they really not feel well? And then two minutes later, you got to clean up the floor cause they threw up and you’re like, oh, I guess they were true that time. But it’s tough.

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For anyone concerned, she was fine. It was a belly ache, but she got an ultrasound. So, she thought that was very cool seeing the inside of her stomach. That was quite a Hanukkah adventure. I like the way that you kind of opened it up to an interdisciplinary investigation. You’re like, what’s going on here and are we going to focus fully on the tinnitus?

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But then, let’s say, that is the child’s main complaint. And then they go to an audiologist and discover that they do have a hearing loss that you can then maybe have intervention to that direction. And that helps it. So, it’s a good question. That’s a good thing. So, I think my main takeaway is that parents should trust themselves, trust their gut. And why not get it checked out? I’m pro going to see what’s going on.”

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Benjamin Thompson: “Yeah, overall, it’s pretty rare for a child to say, “I have ringing in the ear, I’m hearing a noise” and then they actually care about it long enough to keep bringing it up. But entering those teenage years, it’s pretty safe to treat a teenager, almost like an adult in terms of tinnitus management.”

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Dr. Lilach Saperstein: “Okay. Great segue. So, let’s talk about tinnitus management and tell us about the program that you run. I’ve seen on your website that you have so many happy testimonials from people who are like, yay. I feel better. So, tell us how people could get to that place.”

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Benjamin Thompson: “Yeah, that’s a good question. It’s different for anyone. One of the big takeaways I’ve had to realize is, having the best clinical training possible for tinnitus is one thing. And then when I created the YouTube channel and put myself out there as a tinnitus doctor online, people come from all angles, all corners of the world with questions and personal experiences. I’ve learned a lot more after my training than I did in my training just with the diversity of questions and experiences people have had, who find me online. 

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So, one thing I’ve learned where I feel like a lot of doctors get wrong and a lot of tinnitus therapists and audiologists get wrong, is that all tinnitus is not equal. So, if one person’s testimonial seems to suggest their tinnitus was milder and they changed some things and it improved, that does not mean someone else should copy everything they do and expect the same results. Tinnitus is subjective, it’s not always created equal where I’ve seen, this comes in play.

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Most people have relatively mild tinnitus. So, some slight adjustments to either hearing devices, sound therapy, focusing on getting good sleep or using sound throughout the day to keep them focused and not distracted, or getting into some of the fundamentals of their psychology and how they might be overreacting and making this a bigger deal than it has to be.

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That applies to most people. But the people who actually work with me who come to see me have already gone to many doctors. They’ve already tried all the different things online. I would say that they’re not always able to be compared to the majority of people with tinnitus, because for whatever reason, whether it’s their physiology or their psychology, nervous system situation, their tinnitus might be a lot louder than someone else. And it’s an internal, subjective, loudness and experience. So, what I’ve learned, not all tinnitus is created equal and that’s important. That’s something that I didn’t know when I was getting trained in my residency.

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In terms of the programs that I’ve developed, there’s two. It’s important for anyone listening, who is an audiology student or an audiologist, or interested in this question of how can us as professionals bring the medical research, which has been going on for decades, and a lot of funding. How can we simplify that and make the easy to understand and easy to implement for individuals or for groups or for people online. So, I believe that’s my main role here, is to take all this evidence and research that’s been done by institutions like the VA hospital, the veterans hospital in the US, who has thousands and thousands of people with very loud tinnitus. So ,they’ve obviously figured a lot out of what works for most people.

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That is also called a progressive tinnitus management that came out before 2010, around 2005. Before that was tinnitus retraining therapy, which is created by Pawel Jastreboff. And it describes how there’s the psychological component of tinnitus and there’s also the sound therapy or audiology component of tinnitus. And when we work on the negative reactions in the psychology, then the sound usually gets a little softer too. So that’s an approach that is used commonly around the United States and around the world for treating tinnitus, that’s called tinnitus retraining therapy.

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Progressive tinnitus management involves a larger interdisciplinary approach where it starts out by giving out information, it has a sort of pyramid approach. Where progressive tinnitus management, they start with group programs and that’s enough information for most people, but for those who are still challenged and still need the help, then it gets into individual consultation with an audiologist, considering hearing aids, sound therapy devices. For some people, they still need the extra layer of help, which will be one-on-one counseling.

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And then for some people they would actually need to do cognitive behavioral therapy with a psychologist or a psychiatrist. That approach is used with the veterans because there’s many of them, but not everyone needs one-on-one care. Then going back to tinnitus retraining therapy, again, that focuses on the psychology and the sound therapy.

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The way I created my programs was trying to use all that existing literature and research and use the internet, which can share the message most people need, to a lot of people for free, but also give the resources for those who need the extra help, where there’s some paid programs.

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I created a group coaching program where we meet twice a month via zoom video to answer questions and have that group setting. So, people can have that support of a support group, but also get their direct guidance of a professional.

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Up from that, I do one-on-one tinnitus counseling or health coaching about the fundamentals of the psychological component of tinnitus, as well as the holistic wellbeing, focusing on sleep, focusing on diet, nutrition, exercise. For most people, if we can get the body and mind feeling healthier, then tinnitus becomes less of a problem. So, that’s a good place to start.

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Additionally, I perform tinnitus retraining therapy for those who are looking for the tinnitus coaching, the counseling, as well as hearing devices, hearing aids. So, that’s the research that allowed me to create these programs. And if I can add one thing to this, it’s that tinnitus retraining therapy is good, but I feel like it’s missing the important component of the nervous system in the body. Right?

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Tinnitus retraining therapy is all in the head. We have our ears, we have the hearing system, the auditory nervous system, and then the psychology, the mind and the fight or flight response and the amygdala, the emotional system, the limbic system, the emotional brain. But it doesn’t bring in this body. It really doesn’t talk about the body, how, if my body is in an anxious state, if I’m not sleeping well, if my body is tight, if I’m not relaxed, if I’m not doing things throughout my day or week that relax me and ground my nervous system that does not help us get out of the fight or flight response.  So, my personal interest in meditation and holistic living is what I also bring into the approach for tinnitus.

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So, thanks for hearing all that.”

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 Dr. Lilach Saperstein: “Oh, of course. I always want to know how people can access what they need. And, unfortunately, in many, most parts of the world, people do not have full access to all of the medical care, but also otherwise care, like nourishing type of support. And so, the whole thing about how self-care is kind of putting the burden on the person. Like you didn’t take care of yourself enough. Meanwhile, they’re dealing with all these things that are out of their control like systemic issues that are around them. And it’s like, well, you didn’t take a bubble bath. That’s why you can’t pay rent. No, those are two very different things.

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Anyway, that’s a tangent over there. We do that a lot here.

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Recently, I gave a class, also via zoom to a group of Israeli speech language pathologists who were interested in this topic of tinnitus. I explained so much of what you just mentioned, the different approaches and the mind/body connection. And I think it’s something that is also so outside of the training, the specific communication strategies, communication mode, hearing focused that brings us back to what you said at the beginning of what we’re learning as students. And then, we become professionals and meet actual patients and say, well, actually, did I learn what I need in order to provide assistance and help to you? So, I appreciate that.

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In this class, one person asked a very interesting question. I’d love to have your take on it. So, this was an audiologist who also works with industry and with a lot of equipment and various kind of instrumentation. She’s really an instrumentation specialist about all the equipment that we use in the clinic. And her question was, “what is my take on doing the loudness matching, pitch matching, and all those tests that we do in the booth where we can get information about this person’s tinnitus, as much information as we can.” And so, I answered that. I said, “listen, I don’t really understand the point of it, the clinical significance for a person who is suffering. I’d much rather spend the time on this other counseling aspect and discussing so many other things, than getting that their tinnitus matches this or that frequency. Because what am I really doing with that? Except for maybe giving them a band and their hearing aid and their sound therapy that would be matching it, but that doesn’t always necessarily correlate.”

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So, I just said, “I have a less of a focus on that in the clinical sense.” Her response was that because it gives data and data and information can be researched, it also shows kind of a legitimacy to this whole field. And like you mentioned before of getting funding for research, so you kind of need metrics. So I’m wondering what your thoughts are on that whole topic.”

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Benjamin Thompson: “Yeah, that’s great. In the clinic, if a patient comes in with tinnitus, that information of pitch matching, loudness matching in both ears is quantifiable, so it can be used to show someone, this is real. We can measure what’s happening and this is real. Also, a sensation level, which is the loudness of the tinnitus at a certain pitch. The difference between that and the softest sound someone can hear at that pitch, is usually less than 10 decibels. Usually five, six decibels. So, that is useful because we can show someone, look, your tinnitus isn’t actually that loud. It’s just that when you’re in a quiet place and there’s no other sounds, you can hear it. So, we don’t need that much background soothing, relaxing sounds to make your life a lot better and not have to think about the tinnitus so much.

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It can be used in that aspect. Yes. What this individual alluded to, is also true, is that these are quantifiable data points that can be used for research and certain tinnitus devices that have come out that are used clinically, which are in clinical trials of sorts. For example, neuromodulation devices or old technology now, but neuromonics was commonly used. They would, try to categorize the pitch, the loudness of the tinnitus and see if it changes over the course of the treatment. In terms of tinnitus retraining therapy, that classically used model describes how the pitch of the tinnitus does not affect the treatment per se. Anecdotally, most people who have a high pitched tinnitus, prefer certain types of sound therapy. But of course, that should be figured out on the patient’s own time through the sound therapy apps on their phone or in the clinic on a hearing aid fitting by playing the different samples in the device.

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Me personally, in the online telehealth model, I categorize the person’s experiences, but I don’t find any benefit of getting the exact pitch of the tinnitus, as opposed to them saying, I hear a high pitch ringing or I hear white noise. That’s my perspective on it, that it can be used in the complete comprehensive categorization of tinnitus in a clinic, but it’s not necessary to get good outcomes. And it definitely is useful to gather as much data points as possible for a research related project, keeping in mind that a more comprehensive subjective questionnaire, like the tinnitus functional index is more valuable than measuring the loudness or pitch of the tinnitus.”

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Dr. Lilach Saperstein: “Okay. So, in that vein, sometimes when I administer those questionnaires, it almost feels like I’m making it worse because I’m bringing all their attention, like tell me, does this keep you from doing the things you like to do? Does this keep you from going outside? Does this distract you while you’re reading? And then they almost start to think and say, you know what? Yes, that does happen.”

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Benjamin Thompson: “How is that different than asking someone those same questions about their hearing loss and then motivating them to doing something about it?”

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Dr. Lilach Saperstein: “I hear you 100%. I just feel that in some cases it’s better to start with kind of a narrative question and answer and hearing their own words, their own perspective, and then doing the questionnaires rather than the other way around.”

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Benjamin Thompson: “Yeah, I think we’re getting into a healthy subject that most audiologists didn’t sign up to be therapists or a psychologists. And most audiologists, frankly, don’t like working with tinnitus patients because they take up a lot of time. They ask hard questions and they are in a place of high stress and high anxiety. So, it takes education to know protocols of what to do in those cases, but it also takes a certain kind of person who’s willing to connect and feel into someone’s suffering. And as I said, most audiologists didn’t sign up to be psychologists or therapists. What do you think about how that plays into this?”

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Dr. Lilach Saperstein: “Absolutely. And nor is the environment set up to support the audiologist to do that. For example, one place that I worked, there were people in and out of the room because we had a tympanometer in that room. So, one person on the computer, another person’s at the tympanometer, then someone needs to wash their hands because we had a sink in that room, not in a different room.

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So, sometimes the environment is just not the right place to have a meaningful and empathetic, vulnerable conversation where you really need calm, non interrupted, for the person to feel safe enough to even disclose what’s happening. So, yeah, I think you’re right about the audiologists training, their interests, their motivation in coming into this and that I think is also an important thing of why it’s important for us as audiologists, and any professional really, to know what their scope is, how much they can do, and when is the right time to refer, even if it is within your scope. So, I love that there’s this option that we could refer to our colleagues and say, go to puretinnitus.com and maybe this is the plan for you because my private practice here or there doesn’t cater to this specific need.

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And for my end, I love when people send new parents over to me because in the appointment with a new baby, you have to do probably an ABR and then you have to explain things and then you have the ENT visit and they’ve been in the hospital for three hours, but did they get the other part of it?

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“Wow. What does this mean for our family? And what’s the path for having a child that’s deaf or hard of hearing?” So, that’s exactly what I do. I come out of that interaction that’s in a clinical setting and without the stress of the hospital parking meter. Seriously, that’s one of the biggest stressors of hospital visits that parents talk about. They’re like on the clock.

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So, everybody’s on the clock. And so, the zoom modality, the tele-health, I think it’s so important for parents after the kid is sleeping, then let’s come and have our own conversation of your experience. So, I think there’s a lot of parallels there with someone who doesn’t necessarily need any more from their medical team and now they need something else, but they still want it to be someone who’s trained in this field. So, that’s the cool part of audiologists getting online.

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Another thing on that topic is that there’s so much room for everybody, and the rising information, the rising tide of audiology is good for everybody in our profession. That’s another topic that the hullabaloo about, over the counter this, and are we valuable? And it’s like, “Oh, we are. Very, very.” Haha.

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Benjamin Thompson: “Totally agree. And after about 10 months of creating YouTube videos twice a week for tinnitus, I’m also now incorporating different reviews of hearing devices. Some of them, your big hearing aid manufacturers that you’ve all heard the names of. Others, are more online, direct to consumer hearing aids. So, that’s something to check out. My YouTube channel is BenThompsonAUD, and it will be tinnitus and hearing focused.”

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Dr. Lilach Saperstein: “That’s awesome. Exactly right. Those resources are so incredible. And the fact that, like you mentioned before about this pyramid, there’s so much free and available and accessible things. YouTube podcasts, downloads, and all sorts of things. And I think that for most people, there’s so much value in you forwarding a video. Be like, “Hey, I thought of you, you were mentioning this.” And then just pop them a video link or send them the podcast, or sign up for the free guide or free E-Book to not only think of yourself, but actually to think of people who might benefit from that. And honestly, this whole gift guide thing is happening around me on the internet. So, what a kindness you do for the person who needs it, and it’s also really, really wonderful for the person who created it to try and get it to the right hands.

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You might think that’s a small thing. Like, I forwarded a YouTube video, but it can really change someone’s day, someone’s perspective. So, I hope some people will do that, visit the show notes and see all the links that were popping in from today’s conversation.”

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Benjamin Thompson: “Absolutely. One thing I realized is that many people view the content. Many people listen to the podcast. Many people listen to the YouTube channel, et cetera, and very few comment. And there’s experiences that are shared. As another millennial audiologist myself, I want to say thank you for creating this podcast that I’m a guest on here, All About Audiology and how it can inspire younger audiologists to use our technology skills, because they are a skill. They have to be learned to share a message that can impact many lives outside of our own geographic area. So, I think it’s really fun. I think what you’re doing is great and I hope that you continue to do it at whatever pace feels right for you.”

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Dr. Lilach Saperstein: “Thank you. All right, so, always my last question for our guests is: What advice do you have for our listeners, for parents of children who are navigating audiology, for our communication disorder students, audiology students, and for our colleagues and professionals? That’s very wide. Basically everyone. What do you have to say?”

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Benjamin Thompson: “My advice for parents is that whatever stage of the journey they are on in terms of their child having a hearing condition, that there’s going to be unknowns. And the next step is to some degree, unknown and to simply do the best we can with the resources we have, where we are currently at. And trust with the right professionals, with the right doctors, the right technology, that things will happen however they’re supposed to happen, in the best way possible.

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I was a student a few years ago. My advice for my old self as an audiology student would be to try diverse specialties in our field, and to not expect to know where I will be in five years. I had a five-year plan from where I was going to be from school till where I am now. It’s totally different. I thought I would be in a nonprofit. I thought I would be doing public service loan forgiveness. Now I’ve completely switched to more entrepreneur, digital, YouTube, telehealth model. So, not to project too far in the future.”

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Dr. Lilach Saperstein: “I don’t have a five minute plan. I don’t know. Haha.”

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Benjamin Thompson: “Oh, come on. You’ve got something.”

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Dr. Lilach Saperstein: “No. It’s a tough one. I think 2020 is definitely the opener that’s like, you thought you had plans, life changes. But I have to say that when the first thing you said about the parents embracing the unknown is like all of parenthood pretty much, but specifically in this topic, it’s so, so true. And in the same time that you don’t have answers, to remember to hug your baby and hold your baby and look at their little cute face. Like not to forget all those things, even while you worry. Or maybe take the worry down a notch for like three minutes and also be there. Yeah, that’s really nice.”

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Benjamin Thompson: “And then for audiology professionals, realize that the modern consumer is changing behaviors. They’re searching more online, and they’re searching more on Google, searching more on YouTube. Additionally, for the audiology professional, personally offering tinnitus services, just to share. If you don’t feel comfortable in the tinnitus counseling component, that’s okay.

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You don’t need to force that, but to give resources to the patient so that they can pursue it on their own, whether that’s through a cognitive behavioral therapist, through the American Tinnitus Association and those resources, or through telehealth, like myself, just outsource what you don’t feel comfortable with to give the patient the option to continue.

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Dr. Lilach Saperstein: That’s so true. I’m so grateful for all of the. Advice that you share and also your expertise. Thank you for coming on the show. If anyone is interested in working with Dr. Ben, visit pure tinnitus.com and all of resources and links will be in the show notes @allaboutaudiology.com. Anything else?

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 Benjamin Thompson:  

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Last words is that in the spirit of leaving comments and recognizing that we are just like any listener out there. Leave me a comment on my YouTube channel about where you live and that you arrived there from the all about audiology podcast. And I will respond to you personally.

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Dr. Lilach Saperstein: Awesome. That’s great. Thank you so much. And thank you all for listening.  This is the All About Audiology podcast. I’m Dr. Lilach Saperstein.

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The post All About Tinnitus via Telehealth – Episode 58 with Dr. Ben Thompson appeared first on All About Audiology.

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Read the full transcript here

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As parents, we’ve all heard at some point that each child is  unique and will reach milestones at their own pace. Because of this, we might second guess ourselves when we feel that something is going on that warrants further investigation. 

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Today I am speaking with Jenae Dunlop, a children’s Speech and Language Pathologist from Canada. Jenae is passionate about educating parents on the importance of early intervention, and letting them know that it’s ok to seek help if a delay is suspected.

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This week on the All About Audiology podcast: 

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For more resources and research visit:

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All About Audiology Website

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www.allaboutaudiology.com

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All About Audiology Facebook group 

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https://www.facebook.com/groups/470583160143167/about

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AllAbout Audiology Instagram

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allaboutaudiologypodcast

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Communication Station Website:

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www.communicationstation.ca

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Communication Station Instagram:

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@communication_station_speech

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Communication Station Facebook:

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https://www.facebook.com/jenae.dunlop

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Listen Next/Related Episodes

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Next time on All About Audiology: 

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Episode 57 – All About Educational Audiology – with guest Dr. Tina Childress

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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and today we’re going to be talking about the importance of early intervention. And if you ever come across a question, you’re a parent, and you’re saying, ‘Hey, my kid does this, or my kid doesn’t do this yet. Should I be worried?’ You know, parents have those questions about pretty much every topic in the development of their child. And it’s an important thing to listen to that question and that intuition. So today, we’re going to be speaking with a speech language pathologist who really focuses on this exact piece of education to say, when you have a question, should you seek help? Yes.

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Let’s hear more from Jenae Dunlop.

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Dr. Lilach Saperstein: “Jenae, welcome to the show. I’m so excited to have you.”

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Jenae Dunlop: “Thank you. I’m so excited to be here.”

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LS: “So, you’re a speech language pathologist in Canada?”

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JD: “Mm hmm.”

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LS: “And who is your population that you work with?”

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JD: “I work with children, ages two to twelve, and their families. I just started a private practice, actually. And I am passionate about teaching parents and educating so that, you know, if they’re wondering about their children’s milestones, getting them services as soon as they might need them, and working with families to individualize those services so that it works for the family, for the parents, teaching them strategies.”

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LS: “Awesome. What was your interest? How did you, you know, did you always want to be an SLP? Was this something that happened in grad school?”

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JD: “So, I actually have a personal story. When I was really young, I struggled myself with severe speech and language delays, so much so that I could not be understood at all, even by family. And it created a lot of frustration to say the least. I had full out temper tantrums, didn’t matter if we were at home or in public. One day, you know, we were at Zollars, a department store and I’m screaming out, ‘I want pintins, I want pintins.’ And my mom’s like, ‘I have no idea what you’re talking about’. And my brother translated, ‘Mom, she wants the pink shoes.’

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And luckily, I didn’t always have that much trouble communicating because it was very frustrating for everybody. I was so fortunate that my mom and dad put me in speech therapy at the young age of two and a half years old. And my mom was also very, very instrumental in helping me at home, which was amazing. So, I’m also a strong believer in parent implemented intervention. So, I think I just I feel like I have this unique empathy and compassion for the children and the families I work with, because I have that personal experience of how frustrating it is not to communicate.”

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LS: “Yeah. So, you remember being two and a half years old?”

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JD: “I actually don’t. This story is filled in with bits and pieces by, you know, what my parents have told me. And I remember little pieces of it for sure. I don’t remember all of it. It’s actually interesting how language does impact memory. So, there are a lot of gaps I feel like where I don’t remember things that maybe other people would remember.”

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LS: “Well, memory in itself is a whole complicated can of worms of what we remember, what gets stored, how memories can be false memories. Anyway, that’s so interesting that you had the experience of being in speech therapy, and that you had a good experience that you remember it fondly, and like it helped you. So, how long were you in speech therapy for? Do you remember?”

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JD: “Well, I remember in kindergarten, actually, I started not wanting it anymore, because I felt very self conscious that I was being pulled out. At that time, it wasn’t going into the classroom. It was like the speech therapist would knock on the door and say, I’m here to grab so and so. And so, I started getting really kind of feeling self conscious about that and telling my mom, I don’t want to go to speech. I don’t want to. But what was cool is that I actually started speech and drama lessons because my brother was taking them. And so, that gave me another avenue actually to work on speech and kind of build on what I had already been doing with the SLP.”

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LS: “Hmm, that’s very interesting. Because we talk a lot about, you know, children who have hearing loss and incorporating dance class or rhythm and learning an instrument, like different modalities of getting to that without it being officially auditory verbal therapy or auditory rehabilitation. So, that’s great. You were doing like drama and speech and it’s informal. Everyone’s doing the same thing. You’re not being pulled out. That’s great.”

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JD: “Exactly. Yeah.”

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LS: “So, tell me more about what happened when you were in school age, when you were in high school, like did you just finish with it basically, or what?”

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JD: “Well, I do believe, it was the case for me too, where early intervention does set you up for success later on. So, I did actually have struggles with reading comprehension in school, which interestingly, it is linked often, statistically, it is linked to kids who have those speech delays. So, I did find that, but I had a lot of support at school. And I did, you know, I think with that, like family support, too, I ended up graduating ultimately with a master’s degree. So, it’s one of those kind of rags to riches story, I guess. It is kind of cool because I think it can give people hope that no matter how much your child is struggling when they’re little, if they do have that early intervention and they have continued support, even if it’s literacy as they go throughout school, that they really can achieve success still. So, I try to impart that hope to the people that I work with that, you know, it doesn’t matter how bad things can get. It can be a big grieving process for parents really, when their kids are young and wondering, what is going to happen?”

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LS: “Yeah, everybody wants the crystal ball to just know that everything will work out for their kid. But that’s not how life works. But you can kind of do a lot of things when they’re young, and get them the help that they need to help set them up, like you said. That’s so nice. I think it’s kind of this double edged sword that, on one part, we’re saying, ‘Hey, zero to three (years old) is super critical, we must get in during that time.’ But also, there is room for intervention and catch up and support. Otherwise, we wouldn’t have all of the things that we do, all the services from audiology, to speech and all the other therapeutic interventions.

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So, I wonder if you can share a little bit about some of those common, the most common questions, common myths that parents of young children have. And I’d say even more so, during the year 2020, which is like, interrupted schooling and interrupted services so that there isn’t like, you know, the teacher who says, ‘Hey, I noticed something during class’, or anything that’s consistent. It’s like, you’re home, but you’re not, but you’re in, but you’re out. I feel like there’s a lot. You’re not going to go to every appointment, unless it’s crucial. So, there’s just less eyes on your kids these days. I think it’s an important element of this lovely year.”

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JD: “Absolutely. Yeah, I think there are a lot of concerns that parents have that sometimes, unfortunately, I find, in my experience with parents, I hear, oh, so and so, another friend of mine said, ‘Oh, don’t worry,’ or, you know, even a professional is saying, ‘Oh, don’t worry, your child will catch up or it’s not a big deal’. But when I do an evaluation, I actually find, maybe there actually is something here we could be working with. So, I think a big piece in this is for parents, if they look into it or if they have a concern, not to just say, ‘Oh, you know, it’s okay, they’ll catch up.’ But to actually look further into it in case there is something more going on.

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And I think an example of this that I have just goes to show the power of the parent being the advocate. I had a parent recently who got in touch with me and she, her daughter, had been in speech since she was really little. She was working on her “S” for years and years. And she still to this day is lisping, and she’s been discharged two different times from speech. And it’s like, ‘Why is she still lisping? I don’t understand what’s going on.’ Well, after evaluating her, I realized that she had a myofunctional disorder. So, that has to do with the muscles of her tongue and her jaw, like there is something more going on than just an articulation disorder until I was able to appropriately refer and say, ‘All the articulation therapy in the world isn’t going to help your daughter. The reason she still has this speech pattern is because there’s something else going on.’

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So, it was just so eye opening for me that this parent, she didn’t take no for an answer. She had another SLP discharge her daughter saying, ‘oh, you’re good to go.’ And this parent is saying ‘no, I feel something more is going on. So, I’m going to follow up with this’ and now they are getting what they need. So, I would say, yeah, it is a unique time, our kids are at home or at school or a bit of both or whatever they are. But I think to keep investigating when you do have a gut feeling as a parent is a really important thing.”

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LS: “Yeah, with this expression “Wait and see”, you need to put a time limit on that waiting, say like, okay, let’s see how this goes for three months, but not for the next two years. If you’re gonna do “wait and see” then you need to, I don’t know, put a reminder in your calendar that’s going to alarm you and say, Hey, remember, we were worried about that? Has anything changed?”

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JD: “Yes, exactly. And to trust yourself as a parent, like, no, you’re not the professional, but you as a parent have a really strong sense. You’ve had other children, and you’ve seen other children, and you have life experience. So, to trust that gut feeling.”

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LS: “I know, that’s the funny thing. It’s like, we don’t want to compare children as an emotional thing. You know, everyone is different and unique. Everyone’s on their own path. And we do have normal bell curve of like, some kids are a little quicker, some kids take their time. But then you have those extremes at the ends of the bell curve that might need that bit of support. And also, like you mentioned that sometimes it’s not a delay of like, they’ll get there when they get there. But it’s actually a disorder or something that needs intervention. And knowing the difference is kind of why we all went to many years of school.

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And parents, I think you and I really respect the gut, and intuition, you know your kid more than anyone else knows your kid.”

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JD: “Absolutely.”

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LS: “You spend the most time with them. And you also, you know, generally have a lot in common with them. So, you can kind of pick up on the things that other people might not realize. But other times, it does kind of come from someone outside. Because also, the flip side of that is that you know them so well, you might not notice things that someone from the outside might notice.”

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JD: “Absolutely.”

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LS: “We work together. That’s the cool thing.”

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JD: “Yes. I think that’s the beauty of you know, even during these unique times in our world, there’s other professionals, or there’s teachers or assistance or what have you. And so, to take into account that whole kind of collaborative approach is still really important, as much as possible.”

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LS: “Yeah. So important! So, what are the other, specifically for speech, what are some of the other common concerns?”

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JD: “Yeah, I would say one of the really common ones that I hear parents say is, ‘Oh, my little two year old, they’re not really talking very much yet. But you know, that’s just because their older siblings do all the talking for them. So, that’s why they’re not talking.’ And my response to that is, ‘Well, why are they doing all the talking for them? There could be something more going on that it’s not just that simple.’ Kids by nature are really, really motivated to communicate, I mean, communication is such a foundational skill if you think about getting what you want, and what you need in a day. And so, if a child is not really doing much of that, there could be something more. And so I just encourage parents not to just put it to, ‘oh, the older sibling is just taking over.’ I mean, even in my own personal experience, my brother did do a lot of translating for me, but that is because I did actually have a speech sound disorder. And so, he was helping me but it’s because I really couldn’t communicate.”

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LS: “Yeah. And then that ties in to the parent coaching of how to help the parent. For example, I just saw this post about how every single time that you turn on or off the light, say, “on and off”, and if the light is off, don’t do anything. Just wait. They have to ask you (to turn the light on), you know, or to make those situations where you’re going to try to get them to say what they want or you know, hold that candy until they say candy.”

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JD: “Absolutely, yes.”

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LS: “But you know, there’s definitely still a balance there. Because you don’t want to get it to the frustration.”

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JD: “That’s one of the big things I’m passionate about working on, are those strategies like the waiting strategy, you know. You make a comment, and you wait, even if you have to count to 10 in your head, because it’s so hard to wait sometimes. But it’s amazing the power of waiting for your child to say something or even gesture something rather than just jumping in with another question. As parents and as teachers, we can sometimes ask so many questions, in even just a minute, and it just overwhelms the child. So, kind of slowing down and waiting, commenting and waiting. And like you say modeling those words of just very simple language on, off. And then waiting is really powerful.”

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LS: “Yeah. I also know that so much of the modeling, it’s really kind of a mindset shift from asking children questions that they need to answer instead of just like constantly being a fountain of speech just narrating. From an auditory perspective, we want so much auditory input to go in, especially children with hearing loss, we want them to be getting as much as input, statistical information, you know, 30 million words, let’s go.

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So, you know, the old story about the difference between two different parents in the grocery store. One parent has the kid in the stroller and they’re just like doing their shopping. So, the kid is looking around and getting all the input, maybe they are getting it visually and different things, but there isn’t a lot of interaction. And another parent might be like, here’s the milk. Let’s get the milk. Milk comes from a cow. Let’s put the milk in our cart. And already that was another 25 words, just (talking about) every item. I mean, maybe your milk comes from almonds, but you see my point. And that’s a whole other conversation. So, just doing a lot of talking.

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But sometimes, that’s against the parents’ nature. So, what would you say to someone who’s like, I don’t want to do that. That’s not how I talk?”

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JD: “I mean, yeah, with some parents, the reality is, life is busy. And yeah, it’s not their nature. So, I would just say, can we make this goal more achievable by even thinking of one specific time during the day that it feels a little bit more doable? So, like maybe in the grocery store, it’s kind of chaotic, especially during COVID. Grocery shopping is not so fun. What if we could choose maybe a bedtime routine, where you know, when we’re brushing teeth, or reading a storybook together? Could that be a time that we do it? So, I would just try and really meet them where they’re at to really make that feel more doable for them.

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And also, there are different strategies too that might be more conducive to certain parents styles of communication. So, I think the strategy of, you kind of mentioned this before, but we call it a communication temptation, where you’re kind of offering something very motivating, like a toy or a food that the child loves. You’re offering it bit by bit, and you’re waiting for that child to show or to ask that they want more. Maybe that’s something that the parent feels more comfortable with, because they do still interact with their child. I mean, on a day to day basis, they will be giving their child food or toys or what have you. So, that involves less talking, per se, but it’s still a very effective strategy.”

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LS: “Awesome. And I think there’s so much value in getting help, getting guidance, getting support from someone who has that training, or has that experience. And I think it’s hard for parents, because it’s almost like you can talk to anyone or, or you can read blogs from every SLP in the world with different approaches and different strategies. And it’s like, Well, which one is right for me? There’s a lot of power in that.

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And also, the other thing I wanted to mention was that sometimes whatever country you live in might have a system where children are eligible for services that are either very low cost or free, depending on if they qualify. And it’s really important to know that just because someone doesn’t qualify, as in it’s not bad enough to get the services from your government, doesn’t mean they can’t still get help.”

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JD: “Absolutely. I think that’s something I love about going private now is that it doesn’t matter. I don’t have to worry about what does this child technically qualify for? If the parent wants support, I want to give them that support and make that as accessible as possible.”

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LS: “Right. Although, then you come into the question of access, because it’s private. But I still, you know, would recommend that people even look into it, because even just doing the assessment outside of, “Is the motivation for the assessment is that will we give you free services or not?” But if you get an assessment from someone who’s outside that system, well, some could argue that then the motivation might be, “Do I want you as my client or not?” But you know, hopefully, there’s ethics involved all around, what should I say?”

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JD: “I’m actually offering free assessments through September. And the purpose for that is I want to give, this is back to school time, and I want to give parents that opportunity to see where their child is at. Maybe they’ll be totally within average range, and they’ll be just really reassured, or maybe their child will come up with a delay. And they do not have to come to me for therapy just because I did that assessment. So, I want to kind of just give them that. The power is in the information and say, this is where your child came out and you can decide what you’re going to do with that.”

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LS: “Wow, that’s amazing. Unfortunately, I don’t know if this is gonna go live before December.”

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JD: “Hilarious.” Haha.

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LS: “That’s very kind. I think, if anything, people should take with that to say, like, reach out to the local speech therapist wherever you are, and say this is what’s going on. They’ll answer your email. They’ll answer your call. People in this profession are generally helpers and service givers. So, take that to know that there’s really awesome people doing great things.

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Were there any others? Did you have any other myths (that people misunderstand about speech pathology)?”

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JD: “I think this is a good opportunity to me just because it does come up quite often regardless of where you live, is bilingualism. So, children who are exposed to more than one language in the home, whether that be right from birth, or you know, sequentially, one language after the other. Either way, you get a lot of parents saying, ‘Oh, is my child delayed because they are bilingual? Or is bilingualism causing the delay, should we say?’ To that, absolutely not! Research shows over and over again, these things are not linked. And in fact, exposure to two or more languages is really, really positive for the developing brain. That being said, there are sometimes children who have diagnosed language delays who are exposed to more than one language. However, they would have had a language delay regardless of being exposed to those two languages.

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So, the other question parents ask is, ‘Okay, we do speak two languages in the home, they do have a language delay, should we only be speaking English to them instead of the other language?’ And to that, I say, “No!” I say, keep exposing them to both languages, and they will in time, with the right intervention, they probably will catch up. Having that input of both languages, even from a cultural perspective, is really, really important. We don’t want to deprive them of that other language. So, I feel very strongly about talking about that piece, because it comes up quite often and is a misconception.”

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LS: “Yeah. With language, more is more.”

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JD: “Yes.”

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LS: “What about the one parent, one language idea?”

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JD: “Yes. So, that’s another kind of belief. Is it going to be simpler for the child if say one parent speaks, well I’m in Canada, so let’s use the example. One parent will always speak French and one parent will always speak English? That again, that’s kind of a myth that that will help your child per se, learn those languages, you don’t need to be consistent between one parent only speaking one language. Language development is, well research shows it is more fluid. So, you know, both parents switching back and forth between both languages should not be a problem.

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And in fact, research also shows how it can be really helpful for a child, particularly a child with a language delay, if a parent speaks very simply, kind of like what we were saying before with the on/off, when you model language in a simple way. So, if a parent for example, models on/off in English, very simply with few words, and then they immediately translate and model that same on/off in French, and they strategically are modeling both of those things kind of back to back, that is actually a strategy to use with bilingual parents to help those children start to learn. This is on in this language, and this is on in that language, and it will actually help that child.”

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LS: “On Instagram, one of my favorite, super awesome people and accounts is Claudia, who is a bilingual SLP. And her account is Laleo, so it’s like a lot of Spanish and English and just bilingualism. I get a lot of information and ideas from her account. She talks about how sometimes you do an assessment on a child who speaks and is exposed to two languages and you might actually under estimate their language competency. Because the tester only knows the one language but maybe they’re making these different sounds that actually are words or can be counted as words, but the tester doesn’t know that language. So, it’s also a good idea to find a bilingual SLP if you can for the languages that you’re exposed to.

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And the second thing on this topic is, we talk about this a lot is, the bilingual bimodal, bicultural, deaf children who are also exposed to auditory input in whatever spoken language is there in their country or in their home. And also sign language. This is not an either/or proposition. There really can be an exposure to both signed and spoken languages in the same way that you could have exposure to two spoken languages that would not be to the detriment of the development of either of those languages. In fact, it would probably be better.

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And we talked about this, I’m just linking people to other episodes because I know sometimes, you can’t listen to everything. But maybe it’s of interest to you if you care about this topic. Madeline Cheney, who was on the podcast a while back, shared about her son, Kimball. And how, by introducing the sign, something clicked for him. He was like, oh, if I make this sign, then that means something. And then actually, from there, he actually started to speak. So, then they had this combination approach. And yeah, you could hear more about her story during her episode. She made this so helpful to know, and to just hit some of these big misconceptions with speech, where maybe some people just think, oh, speech therapists only work with stutters and that’s the whole thing. And that is not the case.”

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JD: “Yes, yes. I’m so glad you bring up that combination perspective. I’m actually currently working with a little two year old and his verbal language is very limited right now. And so, we are actually using pictures as one of our modalities, which has been very powerful for him. So if, for example, even the picture of more, we can also use the sign more, which is very exciting. So, that actually gives him the choice. He can choose, depending on the situation, is he going to refer to a picture? Is he going to sign that word, but it is just so empowering for him when he can’t yet say that word “more”. I’m definitely a strong believer. I see the positive effects in combining those. And that’s kind of another myth that parents will sometimes bring up or a misconception where, oh, if we introduce sign or we introduced pictures, is that going to stunt my child’s verbal development? That is absolutely not the case! In fact, it facilitates the verbal development.”

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LS: “Amazing. Yeah, definitely. So true! That’s what happens when we have these podcasts. It’s kind of like, yep, I agree. I agree. Excellent. And then an echo chamber of people who agree with each other. Yeah, these are really important topics to me. And I’m really glad that you came on the show to share them with us. Jenae, if people want to find you or follow you, where can they do that?”

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JD: “Yes. So my website is www.communicationstation.ca. And I’m also on Instagram, @communication_station_speech. My Facebook is kind of long, but maybe just link it in the show notes because the link is long. So, thank you so much.”

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LS: “We will do that. Thank you, Jenae. I really appreciate you coming on the show and sharing your expertise and busting some of those myths about speech language pathology.”

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Another episode of interest for our listeners would be the All About Speech Therapy episode from way back in season one with Mary Louise Nichols. And on that show, we talked a lot about medical SLPs and how speech language pathology is actually much wider of a field. So, for any communication disorder students or anyone interested in speech, that’s a great episode. Go check it out.

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And thank you so much to all the listeners of All About Audiology podcast. I’m Dr. Lilach Saperstein.

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The post Episode 56 – All About Early Intervention: Speech and Language Development appeared first on All About Audiology.

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Read the full transcript here

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Do you ever feel too nervous or embarrassed to ask your healthcare provider questions? Sometimes we may think our question is too silly or dumb – other times we may feel too overwhelmed after a diagnosis to speak up. 

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For today’s episode, I’m joined by my husband, Dr. Yona Saperstein (back by popular demand!). We discuss the importance of asking questions and give helpful tips to help remember the information given to us at these appointments. 

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This week on All About Audiology: 

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For more resources and research visit:

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All About Audiology Website

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www.allaboutaudiology.com

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All About Audiology Facebook group 

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https://www.facebook.com/groups/470583160143167/about

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AllAbout Audiology Instagram

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allaboutaudiologypodcast

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Mentioned in this episode:

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Hearing From Both Sides

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Listen Next/Related Episodes

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Episode 50 – All About Therapy – with guest Dr. Yona Saperstein

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Next time on All About Audiology: 

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Episode 56 – All About Early Intervention: Speech and Language Development

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Transcript:

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https://allaboutaudiology.com/bothsides

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And this is the podcast where we talk about audiology and how it relates to your life. What does it mean if your child has a hearing loss? How does that affect your family, your relationships, and your connection to that child? (We talk about) where hearing loss intersects with parenting, and also talking to the other side, the professionals, a lot of students listening, international students studying audiology, speech pathology, and deaf education, hear listening to the podcast, and many professionals, all of the people who are so devoted to caring for your child.

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We are all in this All About Audiology community together. I’m so grateful that you’re a listener. And I want to invite you over to the Facebook group where we’re always having great discussions, and go and start a thread over there. Introduce yourself, tell us what your connection to audiology is, and your favorite podcast or come and ask a question. Tell us about what’s going on in your life with audiology. So, come on in join the All About Audiology Facebook group.

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And now we’re going to jump into today’s topic. Today’s topic is, no dumb questions. And I have to say, back by popular demand, I am bringing my husband in for another topic, another episode together. The last episode that we did together, it was all about therapy with my husband, Dr. Yona Saperstein. And that episode, quickly surpassed in terms of downloads and listens every other episode that came before it. So, that was the most popular episode ever. And I’m really excited about that, because therapy is something that I find to be very, very valuable. And you should go listen to that episode, it will be linked in the show notes.

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But today we are talking about asking questions, asking questions of your healthcare provider, asking questions when you get a diagnosis or when you’re at the doctor’s office. How does that affect your ability to advocate? And do you sometimes feel like, maybe I can’t ask a question or is my question too simple or too dumb? And I wanted to just bring up this recent conversation I had with one of you, a listener of the podcast, who shared with me that her son, who has a unilateral hearing loss, hearing loss in one ear, said that when he was an infant and got this diagnosis, there was a good couple of days where she did not fully understand what the diagnosis was or what was going on.

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She was just overwhelmed with all this jargon and testing here and appointments there. And it took many days until someone actually explained to her that unilateral means one side. Until then she had assumed or thought or was led to believe that the hearing loss was in both ears. And when she realized the diagnosis was actually completely different, and just because of not knowing this jargon term of unilateral, she all of a sudden had a very different response and a different intervention strategy, a different outlook for a child with hearing loss in one ear versus two ears. And so, I think this is an important topic, it comes up a lot. And I want to encourage you to ask questions and not be afraid.

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Dr. Lilach Saperstein: “So, welcome to the show. Dr. Yona Saperstein.”

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Dr. Yona Saperstein: “Hello, Lilach.”

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LS: “How are you?”

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Dr. Y: “I’m very good.”

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Dr. L: “So, this is another one of those impromptu, you’re in the middle of telling me stories. And I say, “Wait, put it on the podcast.” Hahaha.

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YS: “Well, I’ll start with a different story, not the story I was telling Lilach. So, when I was a medical student, the first two years of medical school are spent, at least when I was a medical student, that was a couple of years ago, I think things have changed. But the first two years of medical school were spent in classrooms in lectures. And then the next two years of medical school were spent as clerkships, which means that basically, I got to be a student hanging out in the hospital with residents who are doctors and training after medical school and attendings, which is when the doctor finishes residency, and is, as they call it, a full fledged doctor.

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So, on my second day, as a student working in the surgical ward, the resident asked me to help her out. So, she said, “Can you please call this particular department and ask them to perform a certain test?” So, I said, “Okay, how do you do it?” And her response to me, this resident says to me, and I had just started my clerkship, she says, “Don’t ask questions! Figure it out yourself. And asking questions is a sign of inadequacy.”

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LS: “You mean, how do you get in contact with the other department? Like, what’s the extension to call that?”

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YS: “Exactly.”

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LS: “I mean, how are you supposed to know that?”

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YS: “Well…”

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LS: “Was there a list somewhere with all the extensions or something that you didn’t know about?”

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YS: “Apparently, there was. However, I wasn’t given any orientation. I was just dumped in there and told to do a task and not ask questions. Eight years later, here I am. I’m an attending physician. And I still find myself asking a lot of questions. And I personally do not think I’m inadequate.”

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LS: “Well, I just can’t get over this lady. She’s like, ‘Don’t ask me a question that isn’t even Google-able’. Like that’s an internal hospital policy thing. How should you know, it was your first day in the hospital?”

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YS: “Second day. The first day they didn’t ask me any favors. The second day.”

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LS: “Hahaha.”

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YS: “So, then basically, the next thing I was going to talk about, was the fact that in light of this story, how I personally think it’s very, very important to ask questions. First of all, I myself, despite the fact that I am an attending physician, I ask questions all the time. There is a more senior physician than me in the clinic that I work at. And I ask her a lot of questions. You know, especially because two years ago, we moved to another country, and the system was very different. And I always asked questions. Well, you know, actually the way it works in our clinic, there’s a chat app, kind of like, you know, g-chat, which is protected, which means that you can talk about private patient information and it doesn’t get released.”

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YS: “It’s kind of part of the EMR, electronic medical record, like the hospitals, or the computer system?”

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YS: “Yes.”

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LS: “So, you can chat with other doctors that you work with, that are either senior to you or that you’re senior to them?”

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YS: “Yeah.”

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LS: “There’s kind of this culture of, if you have a question, ask.”

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YS: “Yes. And I chat with the senior physician a lot. And sometimes she would even chat with me occasionally, even though in fact, she has many years of practicing more than I was. Sometimes, she would actually ask me to come into the room, just, you know, to get a second pair of eyes on the patient.”

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LS: “Yeah. And sometimes younger, or more recently trained doctors could have more up to date information from their training.”

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YS: “That’s also true. And I would often (chat) with the other staff, for instance, the nurses and the office staff. We’re always chatting each other, we’re always asking questions. Sometimes, if a patient asked me to do some sort of administrative thing I have no idea how to do, I chat the people in the front desk, and they would usually tell me what to do.”

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LS: “Right. So, I think that’s exactly it. The asking of questions shows that you view the whole thing as a team. And the goal is to get the best care and get answers and not so much about if you specifically know it off the top of your head. I also know, you share this often, that you’ll sometimes look up medication and dosage and things like that in front of the patient with them to say, I know that this is the right medicine for what you’re talking about, I’m just gonna double and triple check before I actually put in this prescription, and make sure that it doesn’t coincide with some other medicine you’re taking or you know, just to do a double check on dosages, right?”

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YS: “I do that all the time. The patients see me and I will literally have the up to date application open in front of the patient.”

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LS: “And this is a question from the patient side, now I’m asking all of you. Listeners, when you see a doctor who does something like that, does that make you feel more confident in their ability and trust them more and know, oh, they’re gonna double and triple check everything? Or do you sometimes have a feeling like wait, does this person know what they’re talking about? Because it can go both ways. It really depends on what the rest of the interaction is, and your whole rapport with them and your whole trust with them. And I think that’s where the issue of asking questions comes in. We get afraid that if we ask a question, we’ll be seen as incompetent like this lady from that original hospital interaction, which was like, hey student don’t ask questions, because then you look dumb. But if you don’t ask, how are you going to learn? Can we tell them that old joke? Haha.”

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YS: “Oh, of course. So, there’s a story. A kid asks, ‘Daddy, why is the sky blue?’ And the dad says, ‘I don’t know son’. So, he asks, ‘Daddy, why is the grass green?’ ‘I don’t know son’. So, the kid asks again, ‘Daddy, why are the clouds white?’ So, the father says, ‘I don’t know son’. So, the son says, ‘Listen Dad. I’m really sorry that I keep asking you questions that you don’t know’. The father says, ‘No, no. Please keep asking. If you don’t ask, you don’t learn’.”

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LS: “Haha. ‘Daddy, am I bothering you?’ Hahaha. It’s so funny.”

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YS: “I actually wanted to make a very interesting point. You know, I personally, as a family doctor would much prefer that patients do stay in contact with me. Sometimes, if I give a patient a medicine, like I’ll start a new medicine for instance like a blood pressure medication, I will say to the patient, ‘If you start to feel any side effects, contact the clinic immediately. If you have any additional questions, please feel free to contact me.’ If the patient does not want to contact me, and they’re afraid to bother me, which I’ve had that sometimes we were, then you know, the patient will take the answer, you know, if whenever I give an antibiotic, then the antibiotic must be taken for the full course. You know, sometimes the patient will have like sinusitis or an ear infection, I’ll give an antibiotic and I’ll be like, take twice a day for seven days. And usually I will specify to the patient, do not stop in the middle take until the end. Occasionally, either maybe I may have forgotten to say it, or the patient may have selectively not heard me say that.”

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LS: “Or, you know, they take it for a few days, then they feel better. And they’re like, yeah, I’m done. So, I don’t need to take it anymore.”

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YS: “Well, you’re not supposed to do that everybody, because taking the antibiotic for half the course will make the patient feel better. But it won’t completely kill the bacteria and the infection may come right back. So, it really frustrates me when patients come in with ear infection, throat infections, sinus infection, I give them antibiotics. And they come back around two weeks later with the same exact complaint. And they’re like, no, I took the antibiotic for three days and felt better. So, I’m like, ummm…. And they are like, ‘well, it started to get worse again, but I didn’t want to bother you’ and I’m like, ‘no, please bother me. Talk to me. This is how you get better, please, I’d much rather be contacted.’

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You know, patients will ask me all sorts of questions. Sometimes, patients will confirm certain things that I thought I said, but I guess I didn’t. And you know, I’m not perfect either as a doctor. I try to literally say every single point to every patient, and I can’t say that I’m totally successful. For instance, sometimes a patient will come to me with conjunctivitis. And I’ll give the patient eyedrops and the patient will confirm, ‘Um, you put those in the eye, correct?’ And yes, you know, for some, it may seem like a stupid question. But no, it’s a very smart question, because there are certain medicines which come in droplets which are meant to be taken by mouth. So, for the patient, it was a very smart question to ask. And from my point of view, I’m so glad you asked. Because I literally do not want you taking this medicine the wrong way, it’s important that you ask the question and confirm that you’re doing it right.

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One time that I was in the hospital, there was a patient with an outer ear infection, among other issues. So, I had clearly given an order for acidic acid, that’s vinegar and I wrote “odek” which means to the ear and I even wrote, put it in the left ear. Apparently, whoever’s job it was to administer the medicine did not bother asking a question or clarify. The patient complains the next day that her eyes burn. Apparently the nurse who was tracked with caring for this patient did not read the order correctly and put the vinegar in his eye.”

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LS: “To treat their outer ear infection?”

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YS: “Yeah, it’s like, for goodness sakes, if you have a question, ask, you know. If you ask enough questions, you have enough avenues of open communication and then everyone will know the same thing. If somebody is afraid to ask a question or communicate, then there will be lack of information. And that will, that can literally lead to disaster. The acidic acid was a minor point. I’ve seen worse cases, which I do not want to put on this podcast.”

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LS: “Okay. So, no dumb questions, but there can be dumb mistakes. I remember hearing that from a high school teacher, who was a science teacher. It was the day in lab and Mr. Solat taught me a lot of Earth Science and chemistry in high school. And shout outs to Mr. Solat. And he said two things in lab that I will never forget. His first thing was he taught us that when you heat something, it gets hot. And he said, we are going to turn on these Bunsen burners, young ladies, but let me tell you, they are fire. When you heat something, it gets hot. When we put things on the Bunsen burner, that gets hot. Because when you heat something, it gets hot. And he says every year I give this entire story in the beginning, this little lecture about heating things, and then they get hot, cause and effect. And you know, you’re in high school by now so you know about fire safety. And yet every year someone burns themselves touching a beaker. It’s like wait, it was glass? Yes. When you heat up glass, it gets hot. That was a total tangent. And I think about Mr. Solat all the time, every time I ehat something, honestly, hahaha, and I don’t want to burn myself.

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But the second piece of that lecture on the first day of lab was, there are no dumb questions, but there are dumb mistakes. And if you’re going to cause noxious fumes to be filling this lab, that’s a dumb mistake. But if you want to ask a question, you should. So, I think, you know, back to what you were saying, that we as audiologists, as speech pathologists, and as educators, everything that we do, all of our goals basically are geared towards communication. And we want people to be able to have access to communication with their loved ones, access to educational material, access to the world around them and being able to communicate in whatever modality with other people. That’s like a big tenet of our entire field of communication, communication sciences. And sometimes, we call them communication disorders because we look at what can go wrong. But you know, the whole idea is to try and get good communication for our patients.

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And then we go and sometimes miss the mark in terms of communicating with the other side, with our patients, as professionals or with our providers, when you are the parent or the family, or the patient. So, I really think that this is a topic that’s incredibly important about bridging this gap and opening the dialogue. And recently, people were talking about how COVID has, obviously, given us exponential growth of tele-medicine, where not everything requires a visit. So much of medicine, so much of healthcare practice is quick, in and out kind of questions, or let me send you a picture or let me ask you about this, you know, or here’s the list of medications, can I take this or that, or here’s my list of symptoms. And of course, I’m sure you’re going to come back and tell me the physical exam, and actually seeing the patient is hugely valuable, duh, we get that. But there is this whole other focus on how much can be done just by opening lines of communication, in addition to or outside of the physical face to face encounter. What do you think about that?”

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YS: “I think that’s an excellent idea. And that happens to me all the time. Like a lot of times, you know, I’ll get a chat from the people at the front desk saying, please call this patient, she has a quick question. And she needs an answer immediately. You know, so, when they say something like that, I’ll stop what I’m doing, call the patient, and it’ll take two seconds. Like, the medicine you gave me yesterday, do I have to take it with food or not? And you know, very simple question, which, usually, if a medicine has specific directions, I will usually give the patient directions. But if there’s no specific direction, it’s okay with food or without food.

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Sometimes, I just, you know, won’t say anything because I’m not thinking about it. So, you know, I’m so glad that this patient asked the question, because otherwise, how are they to know? They can guess. Are they going to guess right, are they going to guess wrong? What if this is a medicine that needs to be taken with food and I didn’t tell the patient anything and the patient guessed. So, I personally was very glad that the patients caught me and asked me the question, and got the answer.

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I would also like to make another point, a little bit unrelated. One of my favorite patient interaction is when the patient comes in with a list, you know, the patient comes in to the appointment prepared with a list of questions. And the patient, you know, reads off the list and goes well, ‘Doctor, I have six questions for you. One, can you look at my right toe? Two, can you look at my left nostril? Three, do you think it’s a good idea to take vitamin D and vitamin C to protect me from Corona and D, look at my bald spot.’

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So, basically, this is someone with a lot of questions, which are all, you know, very unrelated to each other. And, of course, three of these, three out of four of these are things that I would have to see the patient for. And the answer to one of those questions, do I have to take vitamin D and vitamin C? The answer is we don’t really have enough information. There have been some studies that show that taking vitamin D and vitamin C actually can help a patient have lighter symptoms of coronavirus. However, the data is very, very scant. It’s not a good double blind study. My answer to that question is usually, it won’t hurt. But I don’t have enough information to say it actually works. Tangent!”

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LS: “Yeah. Which is a whole other point of saying, I don’t know, is one of the smartest things that very smart and educated people say because the more you know, the more you realize how much you don’t know or how much you can’t know. So, that’s like a huge tenet in research that we have a question. Usually the research question is like, super, super obvious or a dumb question. I don’t know if that’s what I mean, if it’s a dumb question, but the research question, many times when you read the actual question, you’re like, duh, we already know the answer. Or then the general wisdom will already give you the answer. But then we do the research anyway, and try to find specific evidence to give us that answer. So, even as researchers in academia, the whole model of knowledge of getting knowledge, of doing research is asking questions.

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So, let’s start breaking more of that shame around coming in with a list of questions. Because you’re not going to be that annoying patient or you’re not going to be you know, oh, I’m inconveniencing my audiologist when I come in with these articles asking them things because now the audiologist can tell you exactly what it is that you want to know. I know sometimes people will get frustrated when somebody comes in with a 15 page article and says, Doctor, I read this and Doctor, I read that, and some professionals will say, Okay, here we go, this is gonna waste some of my time.”

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YS: “It doesn’t frustrate me, it’s a good intellectual challenge. I’ll have to read the article. Usually, I’ll have an answer. One time, my answer was, that’s a really good article, let me look into that. And it turns out, I actually did change the treatment based on the patient’s article, which actually has happened. Just because I went to med school for four years doesn’t mean I know everything. I learn things from patients all the time. Well, usually my answer is, that’s an article from 10 years ago, I will show you an updated article.”

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LS: “Yeah. And look at that, that there’s such a level of trust, that you can bring something and say, you know, you don’t have to hide things from your doctor, or say, ‘Oh, my doctor said this, but I don’t believe them or trust them.’ They come from a different model. What if you open up the conversation and see, hey, there are certain controversies, definitely, you’re gonna have doctors that disagree about things. For sure, you’re gonna have audiologists that have different views on communication methods and different things.

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However, if you don’t even bring up the conversation with them, how can you know where they stand on those issues that are then going to affect you and your child. So, when you have this level of trust, you can bring up things that maybe are more sensitive, or you’re maybe embarrassed to ask about. So, it’s not only about thinking you might be dumb, but also about thinking you might be like, on the wrong side of something, or you might be judged for what you’ve been doing, or what you’re thinking. I know you have a story about that. Do you want to share that with us?”

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YS: “Sure. First of all, as an intro to my story, just on everything that Lilach was saying, lines that I often tell patients when they kind of feel a little embarrassed to ask a question is, you know, I often say, if you don’t ask, how would you know? Sometimes people ask me a question, and then feel embarrassed about the fact that they asked you, like, ‘Wait, is that a dumb question?’ No, my answer is always, if you didn’t ask, how would you know?”

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LS: “That’s really a great tip for providers to say, you can ask anything. And sorry to interrupt you, but one more thing. You know how sometimes you have to ask certain things like, ‘did you take any recreational drugs and other maybe more sensitive questions? Are you pregnant,’ or these kinds of things? And I know that you say you preface that by saying, I asked this question of all my patients.”

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YS: “That is correct.”

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LS: “So, I think there’s something there also, with doctors who are asking patients questions also can put in some more of this. In speech therapy, you know, or in auditory training, we call this a carrier phrase, that’s like, don’t just say, dog, to try to teach your child that this is a dog and just go around saying dog, cat, ball, more, cookie, but actually use carrier phrases, like, look at the dog, here’s a cookie, let’s go to the park. So, you’re giving context and giving much more language input instead of just like naming things. So, I don’t know why that just, you know, my audiology brain is working here.

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So, sometimes, when you’re giving that context to the question, it’s not just like this brusque, how old are you? What are your symptoms? What’s wrong with you, la di da di da. You know, just like rattling off your questions. But you’re actually doing that rapport building, that trust building. And you’re saying, the reason I’m asking you these questions is because it is relevant. You know, sometimes we ask, did you have a major life event, a surgery or a car accident or a major stressor when we’re talking about tinnitus, or we’re talking about a noticeable drop in hearing? And then the person will say, ‘Yes, it started around the time that…’ Then that’s very important medical history, case history information. So, it goes both ways. This podcast is the community where we come together from both sides. And we’re going to talk more about that at the end. So, stay tuned. But back to your story.”

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YS: “All right. So, I’ll tell the story. And then I want to add an additional point. So, I’ll tell the story first. Around two years ago, I think it was actually, I had actually brought my own kids in to get a flu shot in the clinic in which I worked. At the time, a patient comes in. It was actually a patient who I’ve seen for the first time and she asked me some certain questions about you know, her own medical history. Okay, fine. And then they actually called me out while I was with her to hold my younger daughter down so that they would be able to put the flu vaccine in her arm.”

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LS: “Because I had brought the kids in and I was in need of support. And you were right there. So, I’m like, Can you call the doctor?” Hahaha.

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YS: “Yeah. So, the nurse chatted me on this G-chat. And basically asked me, please come in.”

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LS: “I’m sorry. We’re just like, throwing the perks in everyone’s face. We were both having to hold her down. That was a tough one. But um, because we believe in flu vaccines, so… Hahaha.”

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YS: “Okay, so then, around three months later, after my kids had gotten the flu vaccine, there was a measles outbreak in certain communities in New York and certain communities in Israel. So, this lady calls me up, calls the clinic and has a question to ask. And she says, ‘Doctor, for years, I haven’t vaccinated my children, because, as you know, and everybody knows, vaccines cause autism. But now, there’s a measles outbreak. And I always knew that doctors don’t believe in vaccines and that doctors don’t vaccinate their kids, but I saw you vaccinating your children. So, maybe you can answer me this question, should I give my children the measles vaccines? And are there any other vaccines that you think I should be giving my children, anything that won’t give them autism?’

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So, this patient came from a totally different background, and the background that I have come from has a totally different training, then the training that I come from. For the record, we have ample data, that vaccines, including flu vaccines have been the NUMBER ONE lifesaver in the history of medicine for time and eternity. Well, anyway, I try to be a non judgmental guy. And even people have come from totally different worldviews than I do. I try to be all non judgmental, and listen, we’re all people. And, you know, we’re all trying to have open communication. So, I basically, very sweetly, you know, told the lady this data, and then I said, if you want my opinion, I would personally recommend doing all the vaccines and most of the doctors I work with, also vaccinate. But then I said, if you want to limit your vaccines and do the highest yield, then I would do the measles vaccine and mumps and rubella, because those are the most important. And then I also recommended for her baby to do another vaccine.”

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LS: “Do vaccines cause autism?”

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YS: “No, they do not. There has been a study that has shown that vaccines do cause autism. However, the fact is that the study has been replicated afterwards multiple times with different results. And then the original publisher of the study that shows that vaccines cause autism has later lost his medical license, not because of this study, but because he had forged data in other studies. However, it is likely that he had forged the data in his vaccine causes autism study, due to the fact that very similar studies bigger than his have been redone and redone and redone. And all of them with the results that vaccines do not cause autism.”

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LS: “So, the final answer is, vaccines do not cause autism. Vaccines save lives from life threatening, life debilitating diseases, such as polio, measles, mumps, which have been near eradicated. Wow, this entire podcast just took a huge dive over here. And now everyone knows our pro-vax position, which is kind of like, you know, almost a difficult thing to say sometimes, because you don’t want to introduce this, like, we disagree. And now things are different between us.

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But actually, that’s the point of the conversation is that, if you don’t bring it up, then we can’t, as providers, can’t come back and say, well, it’s very interesting that you have that data, let’s talk about the information you have. Hmm, the information you have has been recalled and known to be falsified. And the person who originally said it has their medical license revoked, but I can see why you thought that because the information sources you are looking at were citing that as accurate. But the information sources that you are not aware of, say this and this and this on, you know, on whatever topic, whether it be vaccines or not.

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But I think, the important and crucial point of this story, to me, is that she would have been embarrassed, she was embarrassed. She was trying to keep that a secret or trying to keep that from her medical team. Well, you said it was only one other time she’d met you so probably, you know, it’s hard to say what she was doing all those years. But without asking the question, then how can you engage in the conversation? And you have to build up that trust that when someone comes to you with a question, you don’t say, oh, with ridicule, How could you believe that? And how could you think that? That’s totally false! Well, I know how you can believe that, because of the information you were presented, and the content that you had known. And it is true that vaccines sometimes have side effects, and that there are sometimes negative outcomes from some things that also have enormously positive outcomes.”

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YS: “That is true. However, if you basically crunch the data, let’s say you have a scale. On one side of the scale is the morbidity and mortality from vaccines and their side effects. On the other side of the scale are the morbidity and mortality of all of the diseases that would be prevented through vaccinations. Clearly, the data shows without any question that vaccines save thousands, thousands of lives.”

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LS: “I think one of the other very timely issues of the year 2020, of COVID pandemic era, is a question of where do we get our information from? Who do we trust? Who do we listen to? And how trustworthy is data? So, I think the most important thing you can do is have a trusted healthcare provider that you have a rapport with, that you can go to with questions. And when you’re coming to an appointment to say, Doctor, you recommended such and such surgery, but I don’t really understand what it’s going to do. I’m not sure that I know how long is it? How long is it going to take? How long is the time to wait in the hospital after? Will we be discharged home? What side effects can we expect or have you dealt with? And some of those questions, it’s almost assumed, oh, well, this is a surgery, you should kind of like know what it is, know what it’s about, or you heard it one time from the doctor. But you like, also had a toddler in your lap? And maybe you didn’t take all that information in, it’s high stress. So, what are some tips? What are some things that patients can do when they’re at the doctor’s office in order to try and remember and retain some of the things that they get answers to from their question?”

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YS: “So, this is something that I also find very important. I mentioned before about how I personally, highly respect and like really enjoy the visits when the patient comes in with a notepad and a list of questions. So, some of these, a lot of patients what they do is they have paper and they write down the answer. You know, if they have a question, then in their notebook next to the question, they will write down the answer, or they will take another paper and they will write down the answer. Sometimes, when I’m talking to a patient, and they’re asking question, I’m giving answers, and then it just seems to me like the patient is confused. What I will often do is I will then pull out a paper, and then I will write all the important bullets on the paper in an organized bullet point fashion, and then have the patient read it back to to make sure that the patient understands it.”

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LS: “Excellent. And even draw a picture, when you’re explaining the different systems.”

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YS: “I’ve done that too.”

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LS: “Yeah, I think it’s important to also have all kinds of visual material pictures and written material. And this is something that as providers, you know, we can prepare ahead of time and have pamphlets and booklets and printouts or even links that we have available, kind of like, here are all the links about this procedure, here all the links about these devices. And then you can have those kind of templated handouts to give people or tips.

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One of the earliest things I did when I started working with cochlear implant patients is that I had this handout for activation. That was, here’s what to expect for the next couple of days, here’s what level of programs you’re on, here are our biggest goals. And some of it was already in there. And some of it I would change or circle or cross out or choose what was relevant to each patient so that they can leave, not only with a new hearing device that would be perhaps overwhelming and different, and a big change, big milestone, activation day. And all these different pieces and the equipment and everything that goes on in that day, they also had this paper, which also had our contact information, email address, that was the clinic email address that I had access to. And that was, you know, something that I think was very appreciated.

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So, if you’re a provider, think of doing that and implementing some of these tips. And if you’re a parent, take notes. And one of my favorite tips also is to take a video of how the audiologist puts a hearing aid in or how they put all the pieces together or how they change the batteries. Like all these little things that they’re demonstrating to you, at the time of the appointment, you can take a quick video, a quick clip, you know, ask permission that they’re okay with it and just get a little reference for yourself that’s on your phone. And now not only that, you can share that with your other family members, other care providers, maybe the school or anybody else who’s going to be involved in caring for the device.

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And this is not only for parents. This advice I gave also for our adult patients who were there with their children, their adult children that sometimes they had a health aide, they had an aide with them or someone who helps take care of them. Or maybe they were in an assisted living facility or things like that. So that this written information or that video, or those emails could be easily moved around and passed to the other people who are helping to care for them.

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So, no dumb questions, ask more questions, whether or not you’re on this side or that side of the interaction, you know, both sides of the desk. I think it’s an important topic for us to talk about, not having so much of a barrier and so much of this kind of power dynamic, but making medicine, making the delivery of health care, much more of a partnership, patient centered, family centered, and about shared decision making, making decisions together. The providers are experts in their fields, and parents are experts in their children.

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That is one of the posts I put up an Instagram that got a lot of comments from you guys, about times that you did feel respected. And like your expertise as a parent was seen, you were asked questions, and you were respected for the things. Because parents spend the most, most, most amount of time with their kids than anyone else. And most, especially when we’re in all kinds of remote learning situations, and homeschooling and zoom schooling, and pandemic life. Basically, if anybody knows your kid, it’s you even before all that. So, when that expertise is respected, and seen for the value of what it is, that’s when these relationships can be really productive.

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And then on the other side, the people who train for years and years, do extra training, do years of residencies, and higher education and graduate school, and all the things that professionals do and train and clinical hours, in order to become experts in our field, that also needs to be respected. And so, when we come from this whole outlook of respecting one another’s expertise, then we’re a team. And we work together, and we respect each other’s humanity, and each other’s experiences and perspective.”

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YS: “Yeah, and a line that I often both believe in and tell patients, when they sometimes tell me stories about specially seen, is that if your doctor should be a source of information, your doctor should not be your army general. It is not that the doctor commands, you follow. That should not be the correct relationship that a person should have with their doctor. Because otherwise you’ll be afraid to ask your questions. And the doctor will say something, what did he say, I have to do exactly what he says because he knows best and I don’t want to bother him. And I must do what he says otherwise, it will fall down on me.

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No, you know, doctors are human beings. And oftentimes a doctor will give a recommendation based on the information. But the more open communication you have, the more information the doctor is going to have and the better recommendation he’s going to have. And it should be a two way communicative relationship with your healthcare provider who is a source of information, rather than the Army General of doctor says, take ABC, you do what doctor says, bye! And sometimes patients will even tell me, can you do the bloodwork on Wednesday and not Tuesday, because if I go to the specialist, and I don’t see exactly as he gave me, he’s gonna be angry.

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And I’m like, I’ll do it for you, I’ll do anything for you. But this specialist is here to basically give an expert opinion on your heart, this is a case that happens to be a cardiology (patient). So, I just told the patient, I know what they’re gonna write. It’s not gonna matter whether it’s on Tuesday or Wednesday, I also kind of knew 90% of what the cardiologist was gonna say. I was in doubt about one particular point, which again, brings to the point of the fact that everyone’s asking questions. Here I am an attending and here I am asking questions of a cardiologist sending a patient to a cardiologist to ask a very specific question, which I personally just did not have enough information, expertise or experience to know the answer and wanted this patient to get the absolute best. Good.”

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LS: “Yeah. And that brings us to also the thing that I often say on this show, and otherwise, which is that if you’re not comfortable with a healthcare provider, if you don’t like your doctor, or if you think someone was disrespectful, or curt, or wasn’t listening to you, you have every right as a patient, as a parent, to get a second opinion, to go to a different practice, to switch doctors. This is such an important point. And I think that not a lot of people recognize that because there is this kind of authority built in to, well, I mean, they’re my doctor and they helped me and they did this for me and they did that and like leaving them would be a rude thing or an ungrateful thing.”

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YS: “Patients leave me all the time, do what’s best for you. Patients switch to me all the time, and patients leave me and go to the senior doctor all the time. Do what you want!”

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LS: “Yeah. And another piece of this is that in obgyn care, a lot of pregnant people might experience difficulty with their pregnancy care, and then they feel well, I’ve already had six or seven or ten appointments with this provider, then they must be also the attending at the birth, which you know, you can switch care providers at any point in time. And if you’re not happy, I’m telling myself things now that I wish I knew at some point in previous. So, a lot of my my work here and my advocacy for this comes from my own personal experience of feeling disrespected and unseen and unheard, and felt like I was being told what to do. And it was like, What do you know? You’re just the actual patient, but I, doctors and surgeons and all sorts of people saying, I know for you and not only that, but I know everything, and I’m not going to explain it to you. And I’m not going to take the time to make sure that you understand or feel comfortable.”

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YS: “That is horrible care.”

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LS: “It was terrible. Yeah, absolutely horrible and traumatic.”

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YS: “I’ve been a doctor now for almost four years. So, you know, I’m not coming from absolutely nowhere, that’s horrible care.”

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LS: “I mean, it was very horrible. Okay. But anyway, we’re not focusing on that today. Just bringing that up to to let you know that you’re not alone. And even if in the past, you felt like there was some of that kind of relationship where it was like, you know, I can’t leave, I can’t just leave. Are they going to give me my medical records, or we’re already halfway through candidacy? So, we kind of have to go with the surgeon? No, you don’t, you can go to another surgeon, you can go to a different hospital. I mean, you know, in the times where there’s access to that, and I fully recognize that not everyone has the luxury of having, you know, multiple cochlear implant centers near where they live. You know, but this goes for anything. This goes for your pediatrician, your speech therapist, anybody who’s giving care to your child, you need to feel comfortable and safe and cared for with them.”

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YS: “A line I’ve often told people and patients, a doctor is like your plumber. If you hire a plumber to fix your sink, and if you like your plumber service, then keep your plumber and continue to hire your plumber to fix your sink. If let’s say you’re unhappy with the plumber, either because they don’t come on time or every time they fix your sink, it leaks, then hire a different plumber. So, doctor/patient relationships should be the same exact thing. And yes, you know, yeah, patients leave me sometimes because they happen to not like my plumbing skills.

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(Both laughing.)

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But that’s, you know, it’s the same thing with a doctor. You are paying your doctor for them to help you.”

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LS: “Yeah, seeing them as a service provider. Yeah.”

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YS: “They are providing service to you the same way your plumber is providing service, even though you’re not paying them directly. In the States, or wherever you are, you’re paying the insurance company, the insurance company pays them, you’re basically paying your doctor to help you. If you don’t like a doctor, same way you don’t like your plumber, fire the plumber and hire a different plumber. Same thing. You don’t like your care provider, fire them and go find a different one.”

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LS: “Yup. So, let’s ask more questions, let’s take back more of our power in these kinds of situations, and actually make it that it’s not really about a power differential or power dynamic. Don’t minimize yourself as the expert that you are. Again, a lot of times I feel like I’m speaking to our two segments of the audiology world and the audiology experience. I talk a lot to parents, and through my workshops and through other work that I do one on one with families. And I also am deeply passionate about my colleagues and I having conversations about our profession. So, in the all about audiology community, we are dedicated to listening and hearing from both sides.

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Hearing From Both Sides
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And I want to invite you to a new program that is going to be three zoom discussions, we’re going to be talking about a lot of these issues in depth, and sharing your own experience and coming together from both sides. A lot of parents, when you’re on that side of it, you’re wonderful to have the resources of local support groups and online support groups, which are with other parents. And that is so valuable. And I highly recommend that you surround yourself with people who are on this journey, who are on this path, especially people who are a bit ahead of you and those who are far ahead of you. So, you can get some of their experience and advice and learn from their journeys. And also, you know, peers that are going through it with you, maybe taking an infant care class, a parent infant class or things like that, to have that kind of peer support. And that’s awesome. It really is. I really love that. And I’m so grateful to be able also to come in and teach and give workshops to nonprofit organizations that are parent led and support groups for parents.

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And then on the other side, we have, you know, all of our professional associations as audiologists, we have our audiology Facebook groups, and we have all of our conferences and our journals, and we talk to each other a lot, which is great because we’re developing best practices and doing research and learning from one another. That’s wonderful, but I believe that there’s a mismatch here. There’s something missing. So, that’s why I created this program. You know, we’ve been talking on the podcast all the time. And in the Facebook group. So, I want to invite you to join us. This is going to be quite a small group, an intimate setting where we can do this and hear from both sides so that we can help each other find the language that would that would have helped us or that is going to help us in the future, to care for the children in our care, whether there are our children, and we are their parents, or they are the children that we care for, in a professional sense and provide service for.

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And that conversation I think needs to happen in this kind of safe container that’s going to be these live calls and community, there’s going to be other elements to it. So, if you’re interested, definitely come and reach out, come into the Facebook group, the Instagram page, you can always send me messages through the website. And I hope that I’ll see some of you and hearing from both sides, which it’s really going to be transformational. And I hope some of you can join.

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Yona, thank you so much for joining me for this podcast episode.”

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YS: “It’s been my pleasure, again.”

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LS: “Awesome. You’re really a wonderful guest and you give me great ratings.”

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YS: “Why, thank you.”

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LS: “So, come again! We’ll have to hear the reviews.”

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YS: “(Singing)”

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post No Dumb Questions! Episode 55 with Dr. Yona Saperstein appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and on this show we talk about how audiology interacts with your life, how it matters to you, and why you should care about any of the anatomy and all these technical things. But really, when we talk about audiology, we are saying, how does hearing and communication impact your relationships (and how does it) impact how you survive in the world. Especially for kids, we have tons of wonderful listeners who are parents. You want to give your kids everything you can, you want to advocate for them.

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So, welcome to the show!

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I’m so, so excited today to introduce you to Margo Helman who is a clinical social worker and therapist. She has a very interesting story to share. We have a little bit of a theme going on in the last couple of episodes where people have reached out to me and want to share their personal stories with hearing loss, audiology or communication and there’s a surprise. So, I’m excited to introduce Margo.

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Dr. Lilach Saperstein: “Welcome to the show. Tell us a little bit about yourself.”

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Margo Helman: “Hi, thanks for having me. First of all, it’s so cool what you do. It’s great and so important. So, I’m really happy to be here.”

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LS: “Thank you. It’s truly a labor of love and a mission from my heart. It’s fun.”

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MH: “Yeah, I want to hear more actually about how you got into it. Maybe I’ll talk to you later. Your listeners probably know all that already. Hahaha.

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So, I’m Margo, as you said, Margo Helman. I’m a clinical social worker and therapist. I work with people here in Jerusalem or online, coping with all of the things, normal difficult things about life. So, anxiety, difficult relationships, illness and loss. That’s my thing. I’m also passionate about mindful listening. Maybe I’ll tell you a little bit about that.

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A lot of us have practices where we self-soothe and we can get ourselves really calm. Maybe some of us meditate or do yoga, little inner things too. Let’s say we’re meditating or doing yoga, we get off the cushion, we get off the mat, we walk into the kitchen or the living room where all the action is and then we can lose it at the people who are most important to us. It’s normal obviously, but sometimes, especially we know we are good at soothing ourselves in other situations, it can feel horrible and ruin our day and get us off track.”

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LS: “Do you mean that people yell at their loved ones? Hahaha. That’s something that happens a lot? Hahaha.”

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MH: “It does, Lilach. I can see you are very innocent about this. Hahaha. Yeah, we usually yell or get terribly upset and it throws us off so much. It’s both fascinating to me and really I want to create a movement, if you want the truth. I want to create a movement of bringing our inner practice to those moments with the people we love the most. Because that’s where we need it. I’ve come up with little tools and ways of doing that.”

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LS: “Oh, wow. I really resonate with that. I want to hear lots more about that. One of the things we talk a lot about is advocating. My method, called the F-I-G Method, people have heard about it, and I’ll link it in the show notes but it’s basically about how do you take all that advocating energy and take it also to random people in the parking lot who just say the rudest thing to your kid. Like, you come in and you have this advocacy hat, but you have to wear it all the time when you are a parent to a child with extra needs or different needs. Honestly we all need it all the time.”

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MH: “I say, we all have special needs, right?”

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LS: “Exactly. So, I’d love to hear how we could do that switch, when you are in the flow, in the zone, you’re taken care of, you’re taking care of yourself, things are good. But then things get rocky.”

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MH: “Yeah, so the first thing is just to notice it. To notice it. I remember a moment when I realized I need to be able to self soothe when I’m talking to my husband or my kids, or when my husband and kids are talking to me. I have to be able to bring those tools. Everyone has their own tools. But just first to notice it, we need them there. If your tools include mindfulness which is connecting to hear and now through your senses, through vision, hearing, through body sensation and touch, maybe taste and smell. To pay attention when you are listening to someone, you are not in the present at all. Often, especially if you are upset.

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You can get back there. It’s not complicated to get back there by just looking up. Look up and look around you and notice where you are. It’s really important to me when I talk about dealing with difficult feelings or difficult reactions, we are not trying to shut off those difficult feelings, because that can make you nuts. The nature of feelings is that they change, but if we struggle against them and pushing hard against the ceiling, then we are actually increasing the contact with it. Not to try to shut out that feeling, but to add something else. To notice where you are right now, everything is fine in 99% of our moments.”

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LS: “I love the mindfulness anchor, I guess you can call it. Just noticing your feet on the floor making contact, or noticing your feet inside your shoes. I don’t know, but I think I probably heard that in a class or a recording and that really stuck with me. Often, I think about how I’m like literally floating in my mind, but at all times, my feet are actually connected to the earth, to the floor, even though I live on the fourth floor. Hahaha. It’s connected to a floor that is connected to the earth.”

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MH: “Feet on the floor. That’s a great one because it comes from something that is meaningful to you. You have a little bit of a story about it. You know, you feel like you are floating, but you are not, you’re on the floor, you’re connected to the earth. So, it’s a great resource for you. It’s integrated with you.”

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LS: “So, what can you share with our listeners for them to have a practical tool that they can use when they are stressed out?”

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MH: “It’s good to just go through the senses, or whichever sense, pick one sense. There are so many different ways to do it. Let’s say two different options. You can pick one sense like what you see and just look up and notice what you see around you. Even, you can find something that you like to look at. All of this sounds like, wait, I’m in the middle of something. I can’t pay attention to something else, I’m doing something. But it can be one moment of just looking up and noticing. There is a beautiful plant that someone gave me right across the room from me, and just looking up and noticing it. And I see it every day, right, but just focusing on it and noticing a little bit more like I’m noticing there is one leaf that’s kind of curly and has dark green on the middle and light green on the outside. I’m seeing it in a way that I don’t usually see it because I’m bringing my attention to it.

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That interrupts the noises in my mind. So, picking a sense, it could be body sensation speaks most to you or it could be vision or it could be sounds and just connecting to what’s going on, here and now through that sense. That’s what mindfulness is. It’s connecting to here and now through the senses.”

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LS: “So, speaking of hearing, would you share with us your experience with audiology and you have a good story to tell me. I’m excited to hear it, haha.”

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MH: “Sure, I’m happy to do that. It’s funny because I’ve never been the focus of attention because of this, it’s funny. I have a story of hearing loss and what’s interesting is, what I was saying earlier about the importance of mindful listening and the importance of being able to listen, completely comes from my hearing loss. So, I’ll get to that too.

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What happened was, I’ll start from the beginning as first we knew it, which was when I was six years old and we were starting in the kitchen on Glengrove Avenue in Toronto and we were talking on the phone. I’m older than you, so I don’t know when you grew up, but there was this wall phone with a long chord and a dial. I’m sure you remember them. We were on the phone talking to my grandmother, my bubby, that’s what we called my grandmother. She didn’t live far away, it wasn’t a long distanced call. We were just saying hello to my grandmother. I don’t know whether it was a special day or what. So, I’m six years old and someone handed me the phone. Also something that was different about those days, a long time ago, it was actually fifty years ago if you want to know, was that I was maybe just starting to use the phone at that age. It’s a big change. It seems to me that if that wouldn’t have been the case, we would have known this already.

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So, they handed me the phone and they handed it to my left ear and I said, wait a minute bubby, that’s my bad ear. That’s the first that anyone knew that I am deaf in one ear. My grandmother freaked out, haha, because that was her nature to be nervous about things. I don’t really remember much about it. I remember that happening and then mostly I remember the stories. And then, we went to get it checked out and we figured out that it was probably because I had a very, very high fever when I was one years old and they gave me phenobarbitol, so I think, maybe there are conflicting opinions. Someone told me it was just because of the fever but when we went to a pediatrician with my son and I told him that, he said, no you can’t get deafness in one ear because of fever. So, then someone said that it was because of the Fenabarb. Who knows? Do you know?”

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LS: “I mean, again, it’s difficult to have all the information from so many years ago but is there anyone else in the family who has this, even like extended cousins or anyone?”

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MH: “No.”

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LS: “Because that would be interesting. What I find so fascinating about your story and your experience is that maybe it was just part of what your experience was but you were able to put language to that as a six year old. But it was the situation. Yeah, this was your bad ear. There was no drama about it, it seems.”

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MH: “There was no drama about it. In fact, there was never any drama about it which was great. So, I was not a really confident kid but it had nothing to do with that. I was never shy about telling people that I need to walk on this side, or without even telling people, just gravitating to the correct side of people so I could hear them.”

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LS: “Do you have hearing in that ear, in the left ear?”

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MH: “I don’t have any hearing in the left ear. It seems to have been nerve damage. When you just said oh wow, I don’t experience it that way at all. There are two problems I’ve ever had with this, they’re not very complex, they are not big problems at all. One was that in University classrooms, big lecture halls, someone would call me but I had no idea where they were calling me from. And after feeling really foolish a few times of turning all around and figuring out where they were calling me from, I made a decision. I’m standing here if they really want to talk to me, they’ll come here. So, that’s one of the two main ways where it was like a “problem” in my life, which is tiny, right?

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The other way was that if I wouldn’t tell people that I need to walk on the other side, or figure out how to walk on the other side without telling them sometimes, I would sometimes bang into trees. Hahaha. Because I’d be walking with my head turned like this to hear someone and someone would say, with my head turned all craned all the way around, and they would say, ‘Hey, watch out!’ and I would turn around just in time to bang straight into the tree.

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So, those were the two biggest problems I’ve had. On the other hand, I think that it has been something that has affected me for the good, not in ways that I would necessarily know about. But looking back, I think it really affected me for the good.

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So, one good thing I was happy about as a little girl, I totally milked it sometimes. I’d be somewhere and my mom would call me that I had to do something and it was like, oh I didn’t hear you. Completely on purpose. So, that was fun.”

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LS: “Sometimes, your children’s behavior is the situation and not their hearing loss. You have to keep an eye on that.”

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MH: “Yeah, of course. A child with hearing loss, is a child. They are going to be, as much as they are kind of mischief makers, they are going to be mischief makers. I believe that my hearing loss made me a really good listener. And it developed kind of naturally over the years. And I think hearing loss also gave me a love of mindfulness. When I first discovered mindfulness, it was something that was kind of familiar to me in a way. I knew I loved it because I had to really attend to people in order to hear them.

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So, my whole life is about listening, you know. I’m a therapist. Haha. And I sing also, I love to sing. It’s all these things that are important to me that have to do with, and are somehow connected. I didn’t always know they were connected but they are connected. I think, I really believe in that actually that we are, each of us, an incredible mixture of strengths, wonderful strengths, and sometimes quite difficult, even terrible challenges. That’s who we are and knowing ourselves and accepting ourselves, that mix of who we are. That’s how we can go out and make a life for ourselves, make a good life. So, that certainly happened with me.”

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LS: “Yeah. You have a lot in common with another guest we had on the show, Jacquelyn, who is also a musician, a singer and she also has a unilateral hearing loss in one ear. I’m finding the term that is coming to my mind is this expression where people say they suffer from hearing loss. And Michelle Hu, who is an audiologist on Instagram, @mama.hu.hears, said, “The suffering from the hearing loss is separate from the hearing loss.” Those are two separate experiences, two separate things. There is a lot of factors that go into which way it’s going to go. What support you have and what resources you have, everyone experiences it differently. But I think it’s really interesting that you see it as, Oh, I had to attend more and I’m good at listening instead of the story of, ‘I had to work so hard and everything is so exhausting to listen.’ Because that’s other people’s experience of a unilateral hearing loss. Fascinating.”

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MH: “I think that’s true in general. Things that are difficult as opposed to suffering or even pain as opposed to suffering. Challenges and even pain seem to be part of the package but we’re the ones that turn things into suffering. Partly, through fighting what is, which is I think part of the gift of mindfulness, of teaching us how to be with what is. Both, in noticing the beauty of what is in the present moment, but also in noticing that when we are in the present moment and we connect that way, all we have to deal with is the present moment. We have this illusion that we need to figure out so much ahead of time and we can’t. So, worry is all about trying to control things that we can’t touch because they are in the future. We can’t get there.”

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LS: “Wow!”

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MH: “But if we remind ourselves that all we have to deal with is the present moment and any bits of specific planning that I might need to do. But they are usually quite small compared to this load of worry that we have. So, I love what you were saying before that the suffering of hearing loss is not about the hearing loss itself, it’s about comparing it to what we think it should be, all that stuff.”

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LS: “I’m curious to know, where you said before, you said your grandmother got nervous and then you went and got tested and you got your official diagnosis. What happened after that? Was there any intervention offered, or classroom accommodations, things like that?”

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MH: “It was very low key. It could be that my parents talked to teachers. I remember I needed a seat up front and also on the left of the classroom so the teacher would be on my right. But it wasn’t a big deal. That worked really well. I guess it depends on what kind of system you are dealing with and sometimes you have to make a big deal, unfortunately.

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So, I would go every year for a hearing test because there was a 100% hearing loss so I couldn’t benefit from a hearing aid, and cochlear implants weren’t a thing back then. I don’t know if that would have been something that they would have even considered. Do people consider cochlear implants now for a unilateral hearing loss?”

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LS: “Yes. Yes. Yes. This has really been a change just over the last decade that’s showing that if implantation happens early during that critical language acquisition period, the first three years, then children have really good outcomes. Many children have really good outcomes when there is one good ear and a cochlear implant in the other ear.

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But if your ear hasn’t heard in all these years and that nerve never got stimulated, it would be a different case and different expectations for someone to get a cochlear implant at that stage. But Jacquelyn who was on the show, she had a traumatic brain injury in a car accident. That’s how she lost her hearing and she got a cochlear implant. She was hearing all the years and then lost the hearing and now has a cochlear implant. It’s an amazing technology for the cases where it is appropriate.”

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MH: “When it first became known about cochlear implants, people were saying, you should do it. You should do it! I wasn’t thinking about the fact that I had gone without hearing loss in that ear for decades. For me, it was like, my life is fine. Why would I want them to go and do this invasive thing if my life was just fine?”

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LS: “There you go. Someone with this exact same hearing loss in one ear, good hearing in the other, might say that they have such a hard time and they really want to try anything that can help them.

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Have you heard of the CROS hearing aid? It’s basically where you put a little microphone on the left side and it transmits to your right ear, just so that you don’t have to actually crane your head. So, that might be an option if you’re interested. Those are some of the options that are out there.”

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MH: “That would be interesting.”

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LS: “Yeah. My favorite story about someone who loved their CROS so much was a veteran that I worked with in the Veterans hospital in Brooklyn. He played in a band so he was always on the side where his ear could hear the rest of the players. When he got the CROS hearing aid, he could be anywhere on the stage so he was very happy about that, that he didn’t have to be limited in the one spot. He could be in the middle or on the other side. Hahaha. So, it’s really very situation-dependent.”

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MH: “Yeah.”

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LS: “But if you are a therapist, you are usually talking to people one-on-one and in quiet rooms. Your situations are different than say, a classroom teacher or a university student.”

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MH: “Right. I work with families sometimes. I don’t experience that my hearing loss makes it problematic for me when I’m doing therapy in larger groups. I also lead groups. I think that it’s given me naturalness of saying, I didn’t hear what you said, which is really important in therapy. Or I didn’t get what you said, I didn’t understand what you said. Again, that aspect of listening and making sure that we are understanding and checking to see if we understand the other person. Listening, I think has very little to do with the ears.”

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LS: “Absolutely. Hearing itself happens within the brain. So, our ears are the tool, the sensory organ that picks it up but all of that happens in the brain. Further, is where you add your understanding, your context, your language. Like, do you even know that vocabulary word, do you understand what they are talking about. Yeah. That’s so important. So, then you really focus on mindful listening and how when we are in a conversation, we are not thinking about the next thing we want to say or how to answer them back and think what’s the big comeback? We actually just listen to what they are saying. How do we do that??? Help!!! Haha.”

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MH: “It’s real. It’s a practice, right? We were talking before about practices that we use for self-soothing like meditation, mindfulness or yoga or any little thing that you do, is a practice. So, mindful listening is also a practice. It is what you just mentioned. Instead of saying not planning what we are going to say, I like to think about it as noticing when we are planning what we are going to say and coming back. All kinds of things happen when we are listening. Part of the reason it’s so difficult to listen is because when we are hearing someone, especially in those moments of conflict, that person is saying things that are difficult for us to hear or they are saying things that we really disagree with and we think it’s really important for them to get that they are wrong. Right?!

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Maybe we may think that that’s true or maybe not. Maybe it is true but the thing is when someone is heated up, they can’t hear us anyway. There’s no way to convince someone that they are wrong if they are angry or intense past a certain point. The best thing you can do when someone is upset is be mindful of your own reactions. Be mindful of everything in that moment. What we do when we are mindful of everything in the moment, the attention moves. Like I was talking about, paying attention to the plant over there, or the person’s face, noticing that my shoulders are all intense, noticing my thoughts and feelings. It’s a whole array of different stimuli, different things that I’m experiencing in the moment and going back over and over again to listening. I can hold on to myself in a moment of conflict. I can choose my response and feel better about my response and create a better outcome.”

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LS: “Absolutely.”

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MH: “It is a practice. What I love about it is, one of the things I love about it is that, it takes relationship conflict or those difficult moments that we have with people that are the most important to us, and turns it into a key part of our inner practice. There’s something also very spiritual about it. It turns it into a key part of our spiritual practice. Usually, we often see these things as separate. Like, people in my life are getting in my way of being as calm as I can, haha, but we are actually more important than that.”

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LS: “That’s really interesting. We’re really integrated into your every day life into those situations that you’re in all the time. Especially people who are in quarantine or stay at home, or kids that are home now for remote schooling. There’s just so much more contact that we have as opposed to saying, see you at the end of the day. There are a lot more interactions throughout the day. At least that’s what our experience has been.”

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MH: “Absolutely. And to see you at the end of the day, where we have that time where we have more choice about how to spend our time, then we go back to our kids or our spouses, refreshed. When we are home all day together, it can be really, really difficult for a lot of us. It can really be painfully difficult. So, finding ways where you can take, I think of it sometimes as a mini vacation, of just taking a breath and just noticing your breath. That mini. It’s super important.”

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LS: “Yeah. I’m doing that right now.”

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MH: “Especially with kids, there’s even more of a… Did you just say that you are doing that right now?”

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LS: “Yeah, I was just breathing as you were talking about it. In fact, everyone, do that as you are listening to this podcast. Take a deep breath.”

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MH: “Yeah, (breathes in deeply), like that.”

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LS: “It’s really restorative, even just one breath. It really brings you back.

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The most impactful and really long-lasting lessons that I learned from being in therapy, highly recommended, is that I actually experienced what you are talking about. The conversation just goes much slower, because there isn’t necessarily a back and forth of two people interacting in an equal sense. It’s like the other person, the therapist, is literally there to hear what you are saying and has no invested interest in the conversation for themselves. So, all of a sudden, you get to hear for yourself what you are saying and then process how that sounds. It’s very analytical where you are analyzing what you thought or what you said without the other person’s volley as a regular conversation in real life, sort of.

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And I remember that in the beginning, I would be like why isn’t this person giving their opinion, their response, their answer. This is a very different version of conversation so I’m a big fan of therapy. It has definitely helped me learn what are those, the juj like you said, the gears turning and how sometimes that like goes so fast, you can’t even hear it yourself until you slow it down and then the therapist is kind of a mirror to that. I really appreciate what you do.”

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MH: “Thank you.”

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LS: “So, many of the listeners on the show are also providers, audiologists, speech therapists, teachers of the deaf. We always try to also give the other side and that’s kind of the podcast too. We all come together and try to have these conversations as a group and it’s not like provider vs. patient. We’re all people. The audiologists and the teachers on the one side are asking themselves the questions that parents are asking themselves. How to do the best by the kids and how to be supportive and give them the best environment and take care of them and ourselves. I’m wondering if you can talk a little to those listeners, our listeners who are providers, how we can incorporate this into our health care practices.”

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MH: “I think in a macro sense, the main thing is that each of us as human beings need to do our own work and figure out what helps us and figure out what are source of inspiration and strength are. I’m not exactly sure if that speaks to your question. I think to know that if we find ourselves reacting in certain ways, we need to understand what is getting to us and to understand what we need in order to nourish ourselves and to learn skills to help ourselves.”

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LS: “That’s so important. So powerful. I think there is this concept of self-care that gets over-applied. Which is like, any problem that you have, (gets a response of ) well you didn’t take a bubble bath for forty-five minutes. That’s not in everyone’s ability and life and resources to do that, especially parents, I mean all parents again, but parents that have kids with special needs have very limited time and resources and so, it’s kind of like the burden of the care is now your problem also. We need care from others. We need support from our community, from family, from the schools and providers, all the therapists and things like that. And I wonder your take on that, on self-care versus getting support from elsewhere.”

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MH: “I had a client once, actually she was a therapy student, a supervisee, who said to me that sometimes she thought therapy was against her social actions. Because therapy is all about getting used to things that maybe you shouldn’t have to get used to because maybe there should be social change. I hear that a little bit in what you are saying. And there is an aspect to truth in that. The whole self-care bible where everything is about self-care, on the one hand, absolutely if it gives you permission, it should be about giving yourself permission as much as possible in your life’s situation to do what you need to do. To say no, for instance, or take a forty-five minute bubble bath if you can, if it is really important to you, but self-care should not be a whip that we then use against ourselves. We turn so many things, our society or we do it together, turn so many things into something that we use against ourselves. It’s true. There’s a lot of things that should be as part of our world, certain basic resources and support that aren’t there. Changing those, would that be better than self-care, sure. We need them both.”

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LS: “Yeah. It reminds me also of the conversation we are having all over about screen time and remote schooling. So many screens. It’s like the screen is not the enemy. It’s kind of like what you do with the screen. There’s mindless scrolling and there’s amazing interaction and support and community that happens on social, things like that. Everything is a tool and I’m excited to hear about the tools that you want to share with our audience.”

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MH: “Yeah. I have this one thing that has been an amazing tool in my life that I decided to write up and give it away. It’s called The soft belly method for staying calm during conflict. It’s a very simple, three step practice that’s basically looking up,, noticing your breath and doing this attention focus that’s about softening the belly. It really has a physiological effect and it also takes our attention back into ourselves rather than being all over the place. I have a link if people want to get that at bookme.name/margohelman. It’s there for you for free and it’s been really wonderful thing in my life and I hope it’s helpful for people.”

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LS: “Thank you so much Margo for sharing that with our audience. There will be a link in our show notes at allaboutaudiology.com as well as a full transcript of today’s conversation as always.

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Thank you so much for being on the show. Any last words?”

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MH: “It was a pleasure. I love what you do. Thanks so much.”

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LS: “Are you on social media?”

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MH: “I’m on Facebook, Margo Helman MSW. I actually have a Facebook group called Calm During Conflict if you are interested, if people are interested more in that.”

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LS: “Awesome we’ll link that as well. Thank you so much.”

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The post All About Mindfulness -Episode 53 with Margo Helman appeared first on All About Audiology.

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Read the full transcript here

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This week on All About Audiology, I’m joined by two very special guests – Razi and Dr. Leah Zarchy who are the creators of American Sign Language at Home. The innovative curriculum breaks down learning ASL into small, simple steps that are designed to relieve some of the overwhelm that parents of new babies might be feeling after a hearing loss diagnosis.

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The story of how American Sign Language at home came about is truly awe inspiring. Razi and Leah have made it their mission to educate parents on the importance of giving children an accessible language as early as possible. 

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This week on All About Audiology:

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For more resources and research, please visit:

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www.allaboutaudiology.com

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https://www.facebook.com/groups/470583160143167/about

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allaboutaudiologypodcast

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Americansignlanguageathome.com (This is where you can fill out the order form for your digital or printed copy of the book)

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ASL at Home

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@asl.at.home

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Mentioned in this episode:

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www.gallaudet.edu

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www.languagefirstlab.com

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Listen Next/Related Episodes

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Next time on All About Audiology: 

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Episode 53 – All About Mindfulness – with guest Margo Helman

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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and on today’s episode of the podcast, I have two very special guests. We are going to be talking with Razi and Leah Zarchy, who have created this amazing curriculum of American Sign Language at home, which has both video and lots of PDFs. It’s a really easy, step by step way to learn early ASL, American Sign Language.

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They are going to be telling us about their process and how they came up with this and also just about themselves. So, I’m very excited to welcome Razi and Leah to the show.

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Razi: “Hi, thank you so much for having us.”

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Leah: “Thank you so much for having us.”

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Dr. Saperstein: “Awesome. Before we totally jump in and get all the details of this amazing story of how this came about, I do want to let our listeners know that while we are recording this, we are on Zoom, the setup is like this. We’ve got Razi in one little box of our Zoom, and we’ve got Dr. Leah over there in the corner and we have two interpreters, sign language interpreters. One is signing everything that I say and the other is going to be speaking for Leah as she signs.

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Did I get that all right?”

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Leah: “Yeah, perfect explanation.”

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LS: “So, throughout the podcast that you’ll be listening to, I am going to cut out all of the pauses and try to make it more condensed in terms of audio and as always, there will be a full transcript at allaboutaudiology.com. So, my first question is going to be for Razi and I’d like you to introduce yourself, tell us a little bit about your background and how you came about for putting together this curriculum.”

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Razi: “Sure. So, my name is Razi Zarchy. I am a speech language pathologist, starting my tenth year in the field. I’m a California native and I’ve lived here my whole life. As, I got started in my career, I knew that I was really passionate about working with deaf and hard of hearing children. So, as soon as I got the chance in my school, and I started taking ASL classes, and trying to improve my skills in that area. I also got involved in the local deaf community which helped a lot.”

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LS: “What was your exposure to the deaf and hard of hearing world?”

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Razi: “Well, as a kid, the first deaf person that I met was my basketball teammate. I played on a YMCA basketball team. There was a local child, fairly close to my age, who was on my team and was deaf and went to the closest school for the deaf to where I lived. We sort of became friends as teammates but we really couldn’t communicate very well. So, I got a book and tried to teach myself a couple of signs, because I realized that my teammate didn’t have access to what the coach was saying. If you’re in the middle of the basketball game and the ball goes out of bounds, the referee blows a whistle and calls out a color, the uniform color for whose ball it is. So, my teammate would wonder whose ball is it? And so, I learned the colors really fast, just to be able to say who had the ball so we could move on with the game. But I realized, hey you are a really cool kid and I want to be able to communicate with you. So, I decided I was going to learn ASL.

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At the time, from my little book, that now looking back, it wasn’t a very good one. I really didn’t learn very much but it kind of got that interest started. And also, I realized that when there isn’t full access for deaf people to communicate, others miss out on getting to know who they are and what they have to say. Because I could tell that my teammate was a really cool person and that I was missing out on knowing what they had to say and vice versa. There could have been a real friendship there but there wasn’t because we didn’t know the same language.”

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LS: “Part of the reason that I love that story is because it shows how important it was for that student, for that child to be involved in a basketball team that was outside of their deaf school, that was integrated into the community for you to be able to meet them and even have that exposure. So, it’s like a win-win for everybody when things like that happen and then that was like your first introduction to ASL. Thank you so much for introducing yourself and telling us a little bit about yourself and now we’ll move to Leah.

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Welcome to the show, I’m so excited to meet you.”

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Leah: “Yes, we finally get to meet after all this time of corresponding over Instagram. Now, we finally get to see each other face to face. Thank you for inviting us to come be on your podcast.

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So, I was born and grew up in New Mexico. I lived there most of my life. I traveled around for different schooling opportunities. I got my undergraduate degree from New Mexico State University. I majored in kinesiology. Now, I thought I wanted to become a trainer, but as I went through my schooling, I realized that I had made the wrong decision. I decided that I wanted to pursue something that I was a little bit more interested in. I was interested in other things. At the same time, I was working at summer camp for deaf and hard of hearing children. That was run from the PE department, that was my department. And that’s where I first kind of got involved with languages of children and child language and language acquisition and that whole process.

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I decided to go ahead and continue my major with kinesiology, however, after that experience at the summer camp, I decided that I wanted to do a graduate program related to linguistics. So, I applied and I did end up going to Gallaudet University. I was there for two years. I got my masters degree and at the end of that, I felt like I wanted more schooling. So, after Gallaudet University, I decided to get my PhD. I got that at the University of Texas in Austin. I focused on second language acquisition at that particular program. I graduated four years ago and I’m now here at the Sacramento State University where I teach.”

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LS: “That’s wonderful. And I actually minored in linguistics in undergrad. That was part of what was going on for me, because I was coming in really interested in languages and linguistics because I came from a bilingual home and I just had this that languages were so interesting to me. Then, that’s kind of where I was introduced to communication disorders where I then moved to audiology. So, we kind of did a cris-cross the other way. Haha.”

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Leah: “Yeah. That’s funny.”

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LS: “I wanted to ask you about what was the language environment when you were growing up. What was your experience?”

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Leah: “Yeah, loaded question. So, growing up, I identified as hard of hearing and lost my hearing more as I became older. But, I was able to acquire spoken language and be able to have some of that hearing to help with that. I was exposed to ASL at a young age, I’m not really sure what the story is and how I was exposed to ASL the first time, but I remember I went and had a hearing test when I was nine. Someone came to the school and my class was kind of in line to go to a particular place to go and get this hearing test. I went and sat down in the booth and the technician, I don’t think it was an audiologist, it was just kind of someone else just giving a basic hearing test at the school. The technician explained that once I put the headphones on, I would hear a beep and then I would have to raise my hand depending on which side I heard it on.

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So, I did the test and by the end, the technician told me to push the headphones into my ears. And she was like, “don’t forget to raise your hand if you hear a noise” and I was like, okay. Pushing the headphones into my ears and the technician urged me to continue to do it even harder and said, “hey, just remember to raise your hand when you hear something.” So, I’m sitting there squeezing the headphones to my ear, sort of cautiously raising my hand. I was kind of on the border of this experience where she wanted me to leave, she didn’t want to all the paperwork. She kind of was not sure what to do with me, but she just kind of excused me and let me leave without sort of coming up with a diagnosis.

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As I got older and I lost more of my hearing, I look back in my life and I see things that happened, like that hearing test and it makes more sense, right? So, my language environment growing up was both English and Spanish and somehow I was exposed to ASL at some point. And I kind of got more and more involved in the ASL community. I felt more attracted to it. I think back at this point, I didn’t realize that I was just kind of really feeling like I was at home. I wasn’t sure if it was the stress in which I was trying to hear things as I lost more of my hearing, or the stress of trying to lip read everything, I’m not sure. But as my hearing level changed, I sort of shifted communities and became more involved in the deaf community and much more of a prevalent ASL user.”

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LS: “Was anyone at home using ASL or only outside with other people in the community?”

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Leah: “I was the only ASL user in the house and my exposure to ASL was only from that community.”

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LS: “Wow. I think that sounds like a very stressful way to try and communicate with people that are closest to you. Wow!

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Okay, so we heard a little bit about Razi, we heard a little bit about Leah. I’d like to hear from whoever wants to tell us, how did it come about? How did you guys meet?”

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Razi: “Well, we met because of linguistics actually. Speaking of linguistics, I actually did my undergrad degree in linguistics and anthropology and then moved over to speech pathology for grad school. I hadn’t mentioned it before but Leah is actually better at telling the story of how we met. So, I’ll let you do that.”

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LS: “Wait, was that at Gallaudet?”

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Razi: “No, I went to UCLA for undergrad and here to Sacramento, at Sacramento State for grad school. We met here in Sacramento.”

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LS: “Okay, got it. Okay Leah, I think that means that you’re on.”

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Leah: “Sure. The way that Razi and I met… I was still relatively new. I had just completed my first year here in Sacramento. Someone who is from the area in Sacramento was visiting and another mutual friend had invited lots of people to come and see this friend who was returning back home. Sacramento, as you may know, is very hot in the summer. And this other friend, her name is Mayla, she decided to host an ASL day at the lake. People all swarmed to the lake and we were kayaking, paddle boarding, there’s a variety of different sports there at the lake, but really just hanging out, chatting and catching up on the beach. Mayla had met Razi through some other events and people and Mayla is also a professor at Sac State. So, she introduced the two of us. She had asked if we had met before but she knew that we both had an interest in linguistics and she thought that we should chat.

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So, of course I took the opportunity to chat Razi up and we just never stopped.”

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LS: “I love asking how people met because I just think it’s so fun. It’s one of those miracle things that one person knows another person who knows six other people and then, tada! You just meet the person. It’s exciting.

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So, anyway, you guys have this adorable puppy I see on Instagram all the time. Leah is always busy with tons of videos and work.”

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Leah: “Tons. Tons.”

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LS: “So, I wanted to hear how it came about that with all the things you two are so, so busy with and all of your responsibilities plus corona fell on everyone’s head. Where did this idea and not only the idea, but doing all the action into fruition, for putting out this curriculum. How did that come about? When did that start?”

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Leah: “I’m going to go ahead and let Razi talk because I think it’s kind of more of his brainchild so go ahead.”

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Razi: “Okay. As part of my job, I work with deaf and hard of hearing infants and toddlers and their parents. I also work with older kids but a large part of my job is working closely with parents who are still very much adjusting to learning how to communicate with their child. Learning what all of this means. Making decisions about communication opportunities and listening devices and all of these things. So, a lot of it is counseling and providing resources. A lot of it is also helping them learn techniques to enrich their child’s language at home.

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Some of it is also helping them learn ASL. I’ve also started a family class at our program that’s for parents or family members of children of any age in the whole district program, but it tends to be the parents of very young children who come, partially because I usually host it at the preschool.

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I don’t have training in teaching ASL and I am not always, necessarily in favor of hearing people to be the ones to teach ASL in the first place. But the purpose of the family class is to provide a place for these families to come and learn together. I’ve done what I can to bring in deaf adults to help teach the class whenever I’m able to do that and also to try and use resources that have deaf adults as language models, even when I’m not able to have someone in there live with me who is also deaf. The problem that I ran into is that the resources for learning ASL that are out there, many of them don’t really meet the needs of parents who have the immediate need of knowing what to say to their child in ASL during everyday routines with a very young child. I’ve done a lot of searching and there are some fantastic resources out there. They just don’t meet that very particular need.

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So, as Leah said earlier, since we first started talking, we’ve never stopped. So, we’ve always been talking about, “I wish this existed. I wish this existed…” One day, we were stuck in an airport for something like six hours because of a canceled flight.”

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LS: “When was this?”

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Razi: “This was, Leah you are better with dates than I am. November?”

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Leah: “That was October 31st.”

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Razi: “She’s sort of a savant with dates.”

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LS: “Maybe because you were in the airport, that’s why you remember what day it was.”

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Razi: “Right, we were stuck in an airport on our way to, right? Not from, on our way to a conference for speech language pathologists who use ASL and others in related fields who wanted to learn about language development and language deprivation.”

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LS: “With Kimberly?”

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Razi: “Yes, with Kimberly. Right, it was put on by Kimberly Sanzo.”

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LS: “We have to shout her out. I love Kimberly. Kimberly Sanzo came on the podcast, way when it was early, early episodes and I learned a lot from her. Everyone should go listen to that episode, I’m going to link it in the show notes. It was about language deprivation and the need for ASL. Sorry, I didn’t mean to cut you off. Please continue. We love you Kimberly, haha.”

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Razi: “We do, we really do. So, we were on our way to her conference and got talking because our flight was cancelled and we were stuck in, I think we were in St. Louis at the time. And we started talking about, okay, what if a parent curriculum did actually exist. What would it look like? What would it include? Let’s just dream for a minute. And I think I pulled out my phone and created a Google doc on my phone and started taking notes. We were talking, talking, talking, coming up with ideas, writing out just kind of a brainstorm outline of what something like this might look like.

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It kind of just sat in my Google Drive for another several months. And then Corona hit, and we started going out for long walks every day because it was our only way to get exercise. We started talking about, what if we actually wrote this thing? The outline got fleshed out a lot more, mostly through discussion, but occasionally I would take my phone out and write down a note or two. Leah started calling this “The Book” and so I started saying, is this an actual book? You think this could actually become a book? And she said, “we have enough material for a book here, why not?”

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So, we finally sat down one day, you could probably tell me the exact date. I don’t remember the exact date, sometime in March maybe.”

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Leah: “No, it was June.”

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Razi: “See? I don’t know. Haha.”

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Leah: “The exact date, I can’t tell you but I do know it was the month of June.”

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LS: “Wow, that turn around was even quicker than I could imagine because if you just started seriously in June, wow my gosh. We are recording this in the middle of August, 2020 for those listening at home.”

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Leah: “It went quickly.”

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Razi: “Yeah. So, the discussions and brainstorming and organization, discussions of how this would be organized all happened mostly on walks and occasional evening conversations from March to June, I would say. So, that sounds about right. Then one day in June, we just made a date. We put it on the calendar that this is a day we are going to sit down and do this. And so, we just sat down and took our outline and started flushing it out. We both were working in one Google doc, each of us on our own laptops. I started writing which language enrichment techniques that I thought were really important and Leah started writing more of the ASL instruction side of things. And we both just kind of came at it from our own unique perspectives.

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I do more of the language therapy side and Leah has years of experience teaching ASL. Together, we came up with what vocabulary would be relevant with these routines. We each sort of did our own part but came back and discussed and supported each other as well. We wrote most of the book in, I would say a couple days worth of time. And then a lot of the other time was devoted to Leah recording videos, making the little images that go with the vocabulary videos, creating some sorts of, I guess what we’re calling our branding. What we want the pages to look like and have a consistent look all the way through. The really fun part was taking it from a Google doc and plugging it into the document that became the book itself, because that made it all real.”

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LS: “Wow, true collaboration. You each had your own expertise and you came at it. I’d love to hear from you about the four chapters of the book, the different routines and just what I love about it, is how functional it is. It’s really from the morning to the evening and bedtime and all the things you do in a day. Instead of, sometimes you see all these early things which are like, the five questions, the “WH” questions. Who? What? Where? When? Why? That’s a good place to start if you are in high school or if you are a hearing person learning ASL, but it’s not a great place to start with an infant.

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Can you tell us about the different chapters in the book?”

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Leah: “Sure. Razi really was the one that helped me think about the different vocabulary or to really kind of hone in on the different routines that we would use, especially when you think about post Covid-19. We have more parent coaches because there are kids who used to be in therapy that cannot be in that office anymore interacting with that SLP (speech language pathologist). Instead they are interacting with their parents on a more regular basis. So, we picked those four chapters based on the things that Razi was already teaching families before Covid hit.

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So, we were focusing on mealtime, you know all kids are there, eating many times throughout the day and we decided that this book would be focusing on a younger population, kids under the age of one. We do want to develop curriculum for older children but one thing that’s really cool about mealtime, is that all the children of any age, typically eat. Right? So, those families who perhaps have older children in the home still can be talking about food with their children. So, we have basic food vocabulary: eat, drink, more, all done, basic terms that come up at mealtimes.

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We have vocabulary related to bath time. Bath time is something that’s such a rich opportunity for interaction with that child and to expose the baby to language. It’s a great time to use what the baby is already interested in, so they are looking around and they show that interest. You could kind of follow that interest to help with that language exposure.”

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LS: “Bath time I think is very interesting for all children, even children that are successfully using hearing aids or cochlear implants because that’s a time when they can’t necessarily be using that, unless they have all this other extra covers and all these things, which you’re not going to use every day or every time your kid gets wet. It’s more like when you go to the water park or the beach or whatever. So, even for children whose primary modality is in auditory verbal environment and they are using their devices consistently, bath time is often an opportunity missed for increased language.”

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Leah: “Absolutely. So, that’s another reason why bath time is really important to include in the vocabulary.

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The third chapter is on diaper changes and that one is something for older kids who, it doesn’t fit for some kids who don’t use diapers but there is some overlap with some basic potty time routines. So, we’re going to be developing that a little bit more later in the future. But, it’s still something that happens and I assure you, you remember right? How many times a day do you change a diaper for a child, right? That’s a lot of time inn which you can be interacting with the baby about different things related to that.

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The last chapter, which I think is my favorite, is on book sharing. And I was always bookish as a kid. I wanted all kids to enjoy books as much as I did as a child. That starts at a really early age and an early connection in that experience to books. But many parents, especially if you don’t know ASL, might not really know how to read to their deaf baby, right? So, it’s the idea of translating a book that is very overwhelming to parents. So, there are ways in which you can engage with your baby and a book without having to read all the words, especially for young children. It’s not about the words on the page, it’s about sharing that moment, looking together at the pictures, looking at each other using facial expressions to communicate and basically bond over looking at a book.

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So, those are the four chapters in our curriculum. We already have many ideas for expanding that in the future but here we are. One day soon!”

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LS: “It’s amazing. I think one of the really valuable things that you have done with the book, which is a physical copy but also digital, is all of the videos that are attached that you can get access to outside of the book as well. Yes or no, actually?”

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Leah: “You can. You can get, we have a page with different links on our website so if you click on that, you will see a list of different videos related to each chapter which you can then watch independently. But some of the videos may be out of context and not make a lot of sense if you just watch them. But if you use them in conjunction with the book, obviously it’s very intuitive. For example, we have a vocabulary lesson and then we have practice with different phrases, so that parents and people who are using this can see the connection between the book and the video. But you can watch all the videos without requesting a copy of the book if you’d like. But, keep in mind, the book is free so please request a copy anyways.”

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LS: “I couldn’t believe that when you started posting on Instagram and right away, of course, I shared about it. And then it took me a couple posts to realize, ‘Wait a minute. Are you giving these out for free?’ Haha. I wrote “$0.00 people. Go download this.” “

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Leah: “I remember that post. Yeah.”

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Razi: “And even just to clarify just a little bit more on your question to links to videos to everything, the primary modality that we are distributing the book is digitally. You can get it as a PDF or as an EBook file, depending on your preferred method of looking at it. Every link in those digital versions of the book is a live link. So, if we have, let’s say the phrases for chapter two, we have some sample phrases, and then right there in the book is the link to the video with the sample phrases. So, everything is all seamless. It’s all in one place in the book itself. The spreadsheet that Leah was describing is if you want to find a specific video or if you only have a print copy of the book, you can still find everything all in one place, but the goal is for everything to just be seamless as you are working through it, that the links are all right there, right where you are in the book.”

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LS: “Okay. So, I have a question. Many of our listeners are international from all over the world, with lots of different languages, spoken and signed. I’m starting to wonder that they are going to listen and some people are going to be jealous that this is not available in their local sign language, you know, what’s being used there. So, linguistically, are some of these signs similar because they are more gestural like drink and things like that or am I totally off about that?”

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Leah: “Well some of the signs like eat, obviously, food, eat, that sign can be translated in many languages, not all but some. I do know that some other languages do have similar signs. But there was one commenter on the request form for our book that said, “Hey, what do you wish for…” Maybe Razi, you can phrase the question better than I?”

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Razi: “On the order form where people can order a copy of the book, there were some questions of what do you say as the potential pros of a curriculum like this? What do you see as potential cons of a curriculum like this? That question was asked to providers and professionals who are requesting a copy and then also for I think, both providers and families. We have two separate forms, and it says, what do you wish were out there?”

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Leah: “Right. Right. So, one comment that we received from that question, someone put down, “Hey, how about you put this out in Auslan, which is Australian Sign Language?” So, it would be wonderful to be able to translate the materials and the curriculum to other signed languages. We want to translate the text into different languages as well, especially for Australia because the English is the same. We would just need to replace some of the videos, most of the videos actually, to reflect Australian Sign Language, but the text would not have to be changed as much. So, we could just say Auslan every word that ASL is written in the text.

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It would pretty much be pretty easy. But if we are able to coordinate this with someone to produce videos in other sign languages, we would love to have that happen, because we know that this is not a unique situation. This is something that parents around the world with deaf babies experience. They want to provide language that they don’t know. So, that’s a hard thing to grapple with and that’s something we want to seriously pursue, especially as we continue to develop materials and grow this and grow the knowledge about this curriculum. We want the curriculum to reach out to as many people in those communities as possible.”

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LS: “Well, you heard it here people. That’s what this podcast is about. So, if you are interested in collaborating with Razi and Leah on this project internationally, you best get in touch with them and tell them you found them from the podcast. I want points, hahaha, for this, providing so much language opportunity for children around the world. That is why I am here.”

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Razi: “Can I add something about that really quick? We do have someone who has been translating the text of the activities and learning resources so far, not the whole book itself just yet, into Spanish because we have gotten a lot of requests from Spanish speaking families who are learning ASL to get access that way. That’s been very much in progress and I believe all of our learning materials have been translated into Spanish. We are almost there with getting the captions on the videos as well into Spanish.

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So, as you mentioned, we are currently giving away the book for free in its’ digital copy. The cost of the printed copy just covers printing and shipping, basically. In the future, we may charge for the book, but only to professionals who are requesting it. We’ll still keep it very affordable. We want to keep it absolutely free and accessible to families for as long as we are able to do so, hopefully forever. That’s our goal.

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If people want to support this endeavor and help us keep it free or very affordable, we do have a patreon account, where people can become a patron. What that means is, that you’re basically subscribing to pay a certain amount per month. And if you choose the amount to help us afford, really what it’s going towards is translation, paying translators to translate the materials into as many languages as possible. We started with Spanish because that’s where we got the biggest demand but we want to keep going and expanding it outward. Because, I work with mostly multi-lingual families and I know that a lot of other folks do as well. We are getting requests for other sign languages like Leah said, also other spoken languages. We do want to keep up that work. So, that’s one way we can keep the translation going. “

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LS: “Yes. I so much believe in the way that you’ve made something so complicated and I just hear a lot from people who have a new diagnosis as an audiologist. They say, ‘this news fell into my life, like a meteor from the sky.’ Lots of times, parents have a child who is deaf and no one else in the family is deaf and they’ve never met a deaf person before. And now, they are getting all this information about how they must do this implant, or you must teach ASL or you must do this or that. They are just kind of like, I need to change a diaper today, that’s what I need. I don’t know what anyone else is talking about. Then especially, in the last few months, when everything has been disrupted, I think a lot more people have gone online, even more so than regular to get help. I’d love for both of you to give us some advice for the listeners and for the professionals and providers who work with them. Why should they pursue this kind of curriculum, as opposed to let me go this other route that lots of people are telling me about. Auditory oral and I have to go the medical audiology related model. But they are kind of confused with all the information that’s coming at them. What would you say to the listeners?”

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Leah: “I think the first thing is that we love language as linguists. We love language and we love multi-lingualism. The more languages, the better. So, for that family out there with a baby that’s two months old and they are starting to sign with their baby, do it in functional ways. Maybe you are still trying to figure out, I just had a baby two months ago, I’m not sleeping that much. Obviously, you have a newborn infant but there’s also this also news that you are grappling with. But your baby is still healthy and looking around and seeking opportunities to connect with you as a parent and providing accessible language is a great way to start that bond and to start that journey with your child.

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Maybe at some point you will give assistive listening devices to your child, a cochlear implant or a hearing aid, but maybe they don’t need that. I know many people out there who have a cochlear implant and still sign. It’s not an either/or type of situation so, I really want to emphasize that. Deaf people with cochlear implants can still sign, right. And they can know more than one language. Knowing more than one language is better than knowing just one.

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So, there’s no need to decide right now what to do with your baby. But don’t wait until you know how much they can hear with a cochlear implant or hearing aid. Go ahead and start signing with them. They will be your best guide. They will tell you what they want, what they like, what they understand and the more language exposure that they have, the better that they will be able to tell you what it is that they prefer. So, start now. And after that just follow their lead.”

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LS: “I’m obsessed with the advice of listen to your child and follow them and they’ll show you. That is so, like you said about connecting and not being stuck in a dogma, but rather what’s the reality of this family and this child. In an earlier episode of the podcast, we had a mother Madeline from The Rare Life podcast. She spoke about her son, Kimball. Listeners can go and listen to her whole story, but she mentioned how hurt and how attacked she was in some of these Facebook groups, (and they told her) you’re a bad mother, you’re this and that. All of these messages because of various choices she was making about language, when what she was coming for was advice, support and guidance from people she thought would get it from. But unfortunately there is this divide and I would like to see more acceptance of the differences. Either/or is a very difficult place to live, black and white thinking of anything.

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Razi, do you have anything to add?”

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Razi: “Sure, I have two things. One is language is everything. Language is the vehicle to bonding with other people, to making friends, to education. You can’t learn about math and science and social studies and history and all the things we learn about in school, without a solid language foundation, because it’ll go over your head. It doesn’t matter how smart you are, if you don’t have language, you can’t learn. You can’t learn as well. Like Leah was saying, listening devices do all kinds of things and the technology is fascinating and very impressive. But every child is different and we don’t know how much any listening device is going to do for them until they start getting older and either acquiring spoken language and listening skills or not.

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And if they are not, then now that’s all lost time. Languages are all stored in the brain the same way and so the earlier we can give a child language that they can access without difficulty, the better they are going to be able to learn in the long term and that’s what we are learning more and more through research but also through personal stories who have had late exposure to their first language. So, it’s all about language.

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The second thing that came to mind is, I have never met, there may be folks out there but I’m speaking from my own experience as a hearing person who is involved in the deaf community. But as a speech therapist, people talk to me about speech therapy a lot. I have never met a deaf adult who has told me, I wish I had more speech therapy.”

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LS: “Wow.”

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Razi: “I have met hundreds, possibly, I don’t know. Many, many, many who have said, I wish my parents had calmed down about speech and learned to sign. I would have a better relationship with my parents if they had made the effort to learn and sign when I was little. So, deaf children turn into deaf adults and I think we need to listen to what they are saying and it’s not either/or. It’s really not. More languages are better than none, which is what we are potentially contending with if we are not giving them early, early access to language.”

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LS: “Yeah. Again, that message that parents have to remember what is the point of doing the hearing aids, the cochlear implants or the speech therapy. Why do you want to do that and the goal would be so you can connect with your child and so they can interact with other people and so they can learn. And all those other goals can be reached with this other simultaneous route of speaking and signing, or combinations. The same way that there are these old myths about that you shouldn’t speak two languages, two spoken languages because you’ll confuse the child. That’s not true at all in spoken bilingualism. So, and also, I think people need to hear that it doesn’t have to be that now you have to take ASL for twenty hours a week and go become a fluent person from zero to sixty. You can take this beautiful curriculum and learn how to make some phrases throughout the day. That’s a great place to start without saying, I will never learn this or it’s too hard, or how can I get to classes, I can’t even leave my house… Here’s your answer people. Hahaha.”

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Razi: “That was one of the major goals of this curriculum, was that I am not a parent, I’m a professional who works with parents. I wanted something that I can use in my work with parents who I’m meeting with weekly or bi-weekly or whatever it is. So, if there are parents or other family members who are out there and are thinking, I want to learn some ASL and I’m looking through this and it looks cool but I’m not sure I can do it on my own. If you are getting early intervention services and you have a teacher of the deaf or a deaf mentor or deaf coach or a speech pathologist or someone who is working with you, even through zoom because that’s how we are doing it these days, our lessons are designed to be bite size. They are not expansive, extensive units like you would get in a college ASL course. They are meant to be a limited number of vocabulary words so that you don’t get overwhelmed. It’s a start to get the ball rolling.

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I know parents who have started with our cute little family class or with little short classes offered by the local deaf organization, that kind of thing. When their child got older and was in school all day, they took a community college course in ASL. Those sorts of things. That’s fantastic. Our curriculum is just to get the ball rolling and get parents and other family members comfortable having their hands up when interacting with their child. That’s really our goal here. It’s just to get that comfort level going and then the rest can come from there.”

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LS: “It’s amazing. I’m a big fan. I’m so grateful to both of you for coming on the show, for sharing this incredible resource. Is there anything else you would like to tell our listeners. We’ve added all the links, we’ve talked about all of it, the patreon and where they can get the book, anything else? Oh, where they should follow you on Instagram, that’s where we hang out. Haha.”

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Leah: “Yes, we do. Yes, we do. Instagram is @asl.at.home. On Facebook, it’s all one word, aslathome. Please like and follow us and of course, if you have any questions, go ahead and send us a message. We mostly post about what the resources look like, the layout and how the book looks. And then short little snippets so that we can entice folks if this is something they are looking for, they can go ahead and request the resource. But if they aren’t, that’s fine too. The more that we can do to help make sure this is something you are looking for, then better. Please do contact us if we need to.”

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LS: “Last words?”

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Razi: “Our website is americansignlangaugeathome.com. That’s where you can fill out an order form for us to send you a digital or printed copy or both. So, there is more information about all of it as well on our website.”

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LS: “Amazing. Thank you so very much for both of you. Thank you for our interpreters for facilitating this conversation.”

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This is the All About Audiology podcast. I’m Dr. Lilach Saperstein and I’m so grateful you are a listener. As always you can read full transcripts of the episodes at allaboutaudiology.com.

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The post All About ASL at Home – Book Club! Episode 52 with Dr. Leah Zarchy and Razi Zarchy appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and on this show, we discuss audiology and how it relates to you. We bring on guests who share their personal stories, as well as guests in different fields so we can dive in to the topics that are affecting you and your life. We also have lots of professionals and students listening to the show so, I love the fact that we have a dialogue in our community.

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On today’s episode, we are going to be speeking about how to treat someone with a disability. I want to mention episode 43 that was on recently in July, with Genia Stephen. And on that episode, we talked about creating a vision for your child’s life. When someone has a disability, you are forced to make certain decisions. Whereas, in another situation where a child didn’t have a disability, you would just go with the flow and move from great to great and kind of move along in life without having to make big decisions. Whereas the journey with a child who is disabled is very different.

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So, I’m excited to introduce our guest today, Chaya Klughaupt. She’s a parenting coach and also does marriage counseling. She’s going to share her story and her perspective.

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Dr. Saperstein: “Welcome to the show.”

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Chaya: “Hello.”

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LS: “Thank you for coming on. Chaya, tell us a little bit about yourself.”

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CK: “Okay, so first I’d like to start with that I’m a mother of seven. I have twenty-year-old triplets that were born when I was 24. I have a 17 year old, I have an 11 year old, and I have twins that just turned five. So, as a parent I have experience with teens and young adults and toddlers and multiples. So, I like to share a lot of my own personal experience with my parents, with classes, about my own err in childhood experiences. I learn a lot from them and I teach from them.”

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LS: “Wait, so when you became a mother, you had one, two and three?”

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CK: “Yeah, right away. I started off with three. I never knew what it was like to just have one child where both parents are taking care of that one child and all around that one child. Two parents do the diapers and the feedings and everything. Me and my husband were always juggling that between us. Someone has to feed them, or change the diapers. Thank God, it’s been a wonderful journey. At the beginning, I started off being very, very confident in myself and how I wanted to raise my triplets. I started with the triplets, so I had very confident ideas in how I wanted to raise them. And it actually went very well when they were babies. But it started to get a little more complicated for me as they got older and entered the school system. So, I’ll address that, I think, a little bit later.

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I’d also like to add that I was born, well I was diagnosed as deaf when I was two and a half, almost three years old. I was diagnosed as deaf and the doctor who diagnosed me, told my parents that I would never learn how to speak and listen. That’s what the ytold my parents. This was in Toronto, Canada. They told my parents, ‘You have to send your daughter to the school for deaf and she’s gonna have to learn signing. And that’s it. You don’t have another choice.’

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Thank God for my parents and their own sense, their own belief in themselves and belief in their child. First of all, they could not believe it. I was already almost three years old and to them, they saw a child that was very, very functional. I was a pretty good girl, I was pretty functional. I was a happy child and I did what I was supposed to do. They were pretty amazed at how much I was able to do without hearing. So, they said, if this is how much she is capable of without hearing, we’re not going to send her away to a deaf school. We think that she could do way more, we just have to help her with her hearing.

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Now, back then, and I saw that you mentioned it in one of your episodes, parents, how did they get their information? It wasn’t through the internet where you find tons of options. NO! Back then, you spoke to people, you looked it up like you said in the phonebook and you didn’t get that much of a variety of information. It happened to be that they met, not happened to be, I believe that everything happens with a purpose. They met somebody in the doctor’s office that was Orthodox and they just pointed each other out and introduced themselves. The other couple told my parents that their daughter is also diagnosed as deaf and they are teaching her to speak and listen using auditory verbal, which was in Toronto. They right away gave my parents the number.

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This was basically all the information they had. What the doctor said and what this couple told them. No Google, no internet and that’s what they did. They called this number and they were told that they can teach their daughter how to speak and listen, you just have to give her the right technology, give her the right hearing aids and adjust them properly according to her hearing, and teach her from the basics. I was close to three when I got my first pair of hearing aids and my parents took me to auditory verbal sessions once a week.

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And I have to say, my mother worked with me at home all the time to catch me up on all the sounds, on the listening. I have memories, not when I was three, but I have memories of her putting words all over the house and to read the word and say the word, I don’t think I could read yet. But just to say the word, and just a reminder to say the word. And she wouldn’t stop talking to me. She would talk to me while she was cooking, she would talk to me when she was cutting an apple… She just wouldn’t stop talking to me so that I would just hear as much as possible.”

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LS: “I think it’s very important to point out the tenets, the principles of auditory verbal method are very much about more and more talking, more and more input so that the child hears and is constantly cued to pay attention to sounds around them and put them into words. And also that parents really play a crucial role. Sometimes, people will say that they do AVT (Auditory Verbal Therapy) at school, but maybe the parents are not completely on board or can’t be involved. There are a lot of factors when someone chooses that route, how it goes. So, that’s amazing. Do you mind me asking, we could leave it out if you want, but I’m just wondering around what decade this was?”

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CK: “I was born in 1976, so I would say this was in the 80s. No problem, I can’t believe I’m at that age that you have to be embarrassed to ask me. I don’t feel so old yet. But yes.”

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LS: “I think it’s good to put it into context because so many people are young parents and this is happening now and they are inundated with Facebook groups and podcasts, haha.”

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CK: “Also, I see it with parents in general, not just having to do with disability, part of the problem is that they are overwhelmed with information on how to raise a child in general and how to be a parent. There are so many methods out there and it can be very, very confusing and overwhelming. So, I’m sure when it comes to disability, there is the same issue. You just don’t know which path to choose. That’s why I say, I’m so proud of my parents. On the one hand it was easier because they did have a doctor that told them something else, and they were just so confident in themselves and confident in me. And believe me, if you see my mother, you would know what I’m talking about. If it wasn’t for her and her strong will, I wouldn’t be where I am today. I totally give her (the credit).

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I always say my mother, but she always corrects me and says, it’s me and your father. But my mother was with me most of the time, my father was working. I have nothing against my father, he is a great father. But I do remember my mother playing the main role with that confidence that she had. She had it from the day that she decided. She didn’t have it in the beginning, but right when she made that decision, she had that confidence. I think it’s important in general and I teach it in my classes to have confidence in yourself in whatever you choose. You’re the parent, you decide if you choose this way or that way. When you decide, be confident in your decision. You’re the parent, and you get to decide because it’s your children.”

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LS: “One part of that, you’re saying that she decided and was committed to that journey, you probably had your hearing aids in all day long, made every appointment, all of those kinds of things. If you’re on it, then you’re on it 100%.”

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CK: “Exactly. That was my mother 100%. So, I really admire her till today. Like I have the shivers when I think about it, because I admire her till today when I think about it. It’s true because when my triplets were born, people gave me advice. There wasn’t Facebook yet, we weren’t as connected. I had people calling me and telling me to do this and that, different advice, different opinions. The teacher at the gan, the kindergarten telling me what she thought. Automatically, they see triplets and say, oh, what week were they born? That’s why they are behaving this way. I didn’t have that confidence and that’s when it started being hard for me because that’s when I started hearing opinions and that’s when it started being hard for me and I lost my confidence. I’m very aware of it. That’s why I admire my mother so much because I know how hard it can be out there.

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So, going back to that, they always expose you to sound and hearing, because if you pay attention, people tend to around deaf or hearing impaired children to talk less because they think that she can’t hear, so what’s the point. They don’t realize and they don’t do it on purpose. I’m not talking about teachers and parents. I’m talking about people in general, that’s how people react. Automatically, we think that it’s probably pointless if they’re not gonna hear. My mother always says the opposite, talk as much as possible. She says that when I started talking, I didn’t stop talking.”

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LS: “When I worked at a school for the deaf, I would hear all sorts of people asking questions of, what’s that like? One person would say, it must be so quiet in the lunch room. I said no, if you have 200 students in a lunch room, it gets noisy. There’s kind of this misconception and all sorts of misconceptions and stereotypes that go on. That’s a big part of what we do on this show is try to bring people’s stories and kind of humanize this lots of times for parents who are holding a two-week old with news and are like what just happened? What is our life going to look like? What are our expectations for this child?”

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CK: “Right. So, that’s what I talk a lot about in my class, is expectations. That’s the word. What are our expectations for our child? I know that my mother decided, her goal like you spoke about on your other podcast, is what’s your goals for your children? I think it’s a big part of it. Her goal was very clear to her. It came to clear to her that she wants to raise a child that’s going to become independent. A child that’s going to be an independent adult that’s going to live her own life independently, get married and have children, have a job and a career. I know that’s what she thought. That was her vision and that’s what she was aiming for. And that’s why she didn’t give up and that’s why she worked so hard with me.

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And by the way, I have a younger brother who’s also born with a hearing loss. So, once he was born, she was already on board. She already knew what to do and she got started from day one. He had a little bit more hearing than me, but it was still crucial and she worked with him. From day one, they also mainstreamed me into the regular school system. I don’t remember much of it. I do remember going into first grade and she got me to the regular Hebrew day school and the regular classes. My mother would always say, I want her to have friends and social life with kids her age and in my community. That was important to my mother. I don’t really care about her grades. I care about her social life. Before that, in order to get me into that school, she said that she did not leave the principal’s office until they would accept me. That’s how confident she was in herself. That’s why I say if it wasn’t for her, I wouldn’t be the way I am now. Because she was so confident, she knew what she wanted and she was determined to get it. And they accepted me. They didn’t have a choice.

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I remember going to this school in grade 1. I know today, as a mother, parents are always so nervous about sending their kid to first grade. They think, are they ready? Is he ready emotionally? Does he know his letters? Does he know his numbers? How much does he know? I remember being that nervous mother as well. But my mother wasn’t nervous. I was behind, I only started to listen when I was three to the basics. I was behind. I remember sitting in class and the teacher was saying to turn to page ten or twelve, I don’t know. I didn’t know where the page was, I remember that. But I do remember checking my friend next to me, looked to which page she went and I followed and I copied her. That sticks in my mind still today because I’m very good about that. I’m very good at looking around and checking for cues and that’s what I do. I learn a lot from that.

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From that I want to explain a very important belief that I have, that children and adults with disabilities will figure it out. They really do have the capabilities of figuring it out, a lot of times more than the professionals because they are living with the disability so they need to figure it out. You’re not living in my body, I know what I need in order to figure out what page to go to. That’s how I did it. That’s how I did it in school until slowly my mother would come with me, introduce me to the teacher and tell the teacher that I need to sit in the front row. Give her all the instructions. I remember in fourth grade, I told my mother, please don’t come with me anymore. I want to go by myself.

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I recently asked my mother if she remembers this, and she said yes. So, I asked her, how did it make you feel when I said it? She said it was very hard for her. She was like, what? You want to go by yourself? That was in her goal and her vision but she wasn’t ready yet. I remember myself as a child, I didn’t like it when she came and introduced me to the teacher. I didn’t like it. I didn’t like being singled out and treated differently. I liked to be treated like everyone else. Till today, even in other aspects of my life, I’m a mother of triplets. I don’t want special attention and I want to be treated like everyone else. I don’t want to be singled out. And that’s the same as I was as a kid. I lived like that and always aimed to be like everyone else. I pushed myself a lot to do that. This is a big part of me and what I teach. That’s why it’s important for me to share my personal story and understand where I am coming from.”

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LS: “Yeah, the ability for children to compensate and to find what they need and the answers from other ways. But isn’t that also, something that many of us struggle with and worry about for our patients and our children, that it can be really taxing and that there is so much listening and fatigue and it takes so much more energy to do those things. Whereas in another context, maybe you could have had more support and it would have been easier to find the page because that would have been more accessible to you in a way that you didn’t have to fight for it. What are your thoughts on that?”

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CK: “I didn’t feel like I had to fight for it. I just felt like I was figuring out a way. And my beliefs are, I don’t believe that life is supposed to be easy. Not everyone has a disability, but everyone has something that they deal with or have some sort of challenge. It might not be a visible disability that we see or that we are aware of, but people have challenges. Maybe they come from a home with challenges or they are in a difficult situation. Who knows?! Everybody deals with different challenges. But that’s life. Life comes with surprises, life comes with ups and downs, and children that are put in the real life, figure out a way. They become stronger and they learn from these challenges. That’s what built me. That’s what built me to who I am today. To learn and figure out the situation.

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Even today, I’ll tell you a scary story also before smartphones, a very quick, scary story that turned out fine. But I lived in Israel, I’m trying to remember, no I came back from Canada to Israel for summer vacation and I went in the wrong line for boarding. I went by myself, I must have been like sixteen. I was waiting in the wrong boarding line to get on the plane. I saw I was in the wrong boarding line. So, when I gave them my ticket, they were like you are on the wrong line. Your plane just took off. I missed my flight. So, they sent me to another flight. They were really sweet. They sent me on a different flight and I ended up having a stop over somewhere where I wasn’t supposed to have a stopover. I ended up needing to call my mother. I pick up the phone and I cannot hear a thing on the phone. This is before smartphones, before WhatsApp, before SMS, which makes life so much easier. I picked up the phone and I couldn’t talk to my mother. I ended up asking a stranger to talk to my mother.

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I’m just giving that example that I asked a stranger to help me out. Like, I figured out a way. Obviously, it wasn’t something that I would have liked to happen, but the fact that I knew what to do and I knew how to cope with the situation, comes from the place of always having to try to figure out and cope with the situation. And you never know when a challenging situation is going to come up.

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I find that, even in children that are healthy and well, we want them to learn and know how to deal with challenges along the way. Parents are always asking me, “What’s my role as a parent?” They want to jump in and help, they want to give their kids more. They want to but then the kids are becoming more and more dependent on us and not independent. I want to raise independent children starting from cooking their own food in the kitchen. “But no, the fire is hot, it’s dangerous.” Okay, you’re the mother, you can decide from what age, but are you going to let them at age ten or are you going to wait until they are fifteen? You decide, you’re the parent. But really believing that all children are capable of so much more than what you see and than what we know. We’re more afraid but really they are capable of so much more and they feed off of our fears.”

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LS: “That’s so true. Okay, I wanted to ask you about that day where you told your mom not to come with you (to school) anymore. Did you do the self-advocacy and say, I need to sit in the front and all that, or did you not want to speak about it or address it? How did it go?”

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CK: “I did, I did ask for the front seat because I knew that I needed it. I needed it to hear. I did need that. I wasn’t in denial that I needed it but I liked being able to take care of myself.”

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LS: “Yeah, exactly. I just wanted to get that. It’s one thing to say, don’t come with me and then go sit in the back and isolate, but you were ready to say, don’t come with me. I got this for myself.”

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CK: “You know what, this is a class that the kids knew me and I knew them. I think being in a regular society, that’s what happens. They learned me and I learned them.

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When I made Aliyah and I moved to Israel in grade 9, fourteen years old, it was another challenge. I also told my mom then, I don’t need your help. I’m fourteen, I’m a big girl… Right?! I went to a Hebrew day school so my Hebrew level was very limited. I knew how to read and write, but it was nowhere near the level that I needed but I knew enough to ask for the front seat. The girls looked at me and said no, we are sitting here and they wouldn’t give me the front seat. I could not believe it. I was in shock that they wouldn’t give me the front seat. I was so upset that I had to go up to the teacher and ask her.

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I was really disappointed that I had to do that and that I couldn’t just do it on my own without the teacher’s help. But I did that. I did do that. First of all, with the new language and those classes were horrible but I did advocate myself and pushed myself to the front. I was determined to learn the language, and slowly, the class learned me and I learned them and I made friends. Slowly, I overcame the challenges. I graduated high school properly.

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I’m not going to say that I didn’t get help. I did get help. I’m not against getting help. But I feel that the help came from me asking for the help. The responsibility is in you, it’s not my parents. First of all, my parents had no idea what was going on in school. Also, their Hebrew wasn’t great. And they were busy trying to settle in a new country, finding jobs, paying the bills, learning the language. They were not involved and I think it was very good that they were not involved because I looked out for myself. I really believe that in general for parents and children. I have children of my own. When it’s their responsibility, they ask for the help. And I always tell them, if you want help, I’m here to give it to you, of course. But it needs to come from them if they want it, because then it can be used for the maximum.”

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LS: “Yes, I’m listening. My six year old is going to first grade in the fall, God willing. Hopefully the school will be open, let’s see. Haha.”

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CK: “I know, right?! That’s another challenge that we’re dealing with today.”

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LS: “Yeah.”

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CK: “Just remember, just to address that, a child going to school and I’m going back to that natural instinct of children. They want to learn. It’s interesting, I’m reading actually a really good book now. It’s called, “The Giver of Stars”. It’s very cool because it talks about these four women in the 1930s. There’s no library and they make it their mission to give out books to families that are scattered all over town and they don’t have money. This is what they do. It’s like a travelling library.”

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LS: “Wow!”

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CK: “It describes, this is like before, we don’t realize how good we have it today. And it describes how the children run up. They go with horses from town to town. They spend days travelling to get these books to these families and the children come running out of the house for the books. They can’t wait to see the books. It just reminds you of the children’s natural desire to learn. And we forget. They felt so priveleged to have a book, so priveleged to be able to learn. And I wanted to go back to that inner desire of our children. I believe that every child has that. It reminds me of when my older children were doing homework and my little ones would say, ‘We want homework too.’

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Why did they want homework? Because they want to learn. They also want to learn. You should remember that. Learning to read is like opening up a whole new world for them. It’s exciting.”

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LS: “Oh my gosh, I love it. I feel very connected to your message.”

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CK: “Yeah, this is what I teach in my workshop and in my classes. And I try to pass this on to parents. I find today that lots of parents are struggling because many children tend to be struggling as well. And when we see our children struggle, of course it makes us worry, it makes us nervous, it makes us scared. It makes us want to do more for them. My mother says, you think I didn’t send her to school? When we made Aliyah to Israel, I remember going for my hearing aid adjustment and it wasn’t good. I was fourteen so I was aware and I was very used to the very professional hearing adjustment in Toronto. I was very attached to them and I liked the way that they did it. It was very hard for me to come to Israel and have someone else touch my hearing aids. They did not do a good job. This was back in 1990.

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I remember going to school. Everything was so loud, too loud. Someone would put a cup on the table and my head would jump. It was just horrible, but my mother says, “I sent her to school, I made her go. She told me she can’t hear. She told me it’s not comfortable but I sent her to school anyways. You think I didn’t feel bad? Of course I felt bad but I knew she had to go to school and couldn’t miss a day of school.” That was my mother. She sent us to school and the only time we would stay home is maybe if we had fever. Only if you have fever and you could prove that you’re sick, otherwise there was no excuse. The same thing with hearing. The point is that she was sending me out there to figure it out, to make the best of it. And like I was saying, when our kids are struggling, we tend to do jump in and try to do everything for them.

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It’s a dynamic that you get pulled into. It’s hard to get yourself out of it. That’s what I do in my workshop. I help parents get themselves out of this dynamic and to help invite your children to come and pursue their potentials.”

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LS: “Yeah, I think exactly when you started talking about struggle, that’s exactly the underlying belief that so many parents have. They don’t want their child to struggle or suffer which of course you don’t want that for anyone, but you come back to the realism and say, this is what we have. What are we going to do about it now?”

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CK: “Instead of looking at it as a struggle or as a hardship, look at it as a challenge. Another challenge that we’re going to overcome. Another challenge that we are going to learn from and grow from. It just changes your perspective on how you look at that.”

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LS: “You know what’s funny, many times, in these conversations, we use the metaphor of exercise. You have to work out the muscles to get strong, and if you don’t, they get weak. The same with the hearing. We use it all the time. Recently, I actually started exercising in a more regimented way, and I was like, Oh, I get it. Haha.”

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CK: “And you really have to work at it right? It doesn’t just come.”

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LS: “And it’s really hard.”

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CK: “Exactly. Totally! It’s a great example.”

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LS: “I’m taking my audiology metaphors and I’m applying them to my exercise routine.”

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CK: “It’s a great example. It’s the same thing I always say, “Life is like a gym.” We go to the gym to work on those muscles and strengthen them. I remember my son who is now twenty, as a teenager, I hope it’s okay to say this, I hope he doesn’t get offended, but he was really lazy, okay?! Really lazy and he did not move. When he started joining the gym, I was shocked. I never believed that was going to happen. That’s just another example that you never know where your kids are going to end up. It’s amazing. It’s beautiful to see.

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Clearly, he started joining the gym after never doing anything. He failed and flunked sports at school. Never did any type of sport and he decided that he wants to join the gym. So, I said great and it had nothing to do with me. I just paid for the membership. After that, he put himself on such a strict schedule and on a diet. I look at him today and I’m still shocked. It was really unbelievable. He worked hard. He would be there for like a month and still didn’t see a change. But that didn’t stop him. He just knew that it takes time. You don’t stop after a month. It takes time and then you have to upkeep it. It’s work. It’s a working process. And it’s the same thing in life. Life, you go into it and it’s all a gym. Children learn from life. They learn from school situations. They learn from family situations. They learn from all these situations and if we keep jumping in and helping them, they are not going to learn how to do it on their own. To be independent, and confident and be able to solve problems on your own.

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It’s hard for parents to see their kids struggle. So, don’t look at it as a struggle, look at it as a learning experience. They are going to learn from this and they are going to grow from this. It’s the same with the gym like you said.”

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LS: “Okay, I just do have to take with you the other side of this. Which is, this works up until a point. Because you’re also not going to take a child and throw them in a pool…”

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CK: “You know what, someone just told me, it’s funny that you say that. Someone just told me there is a method that does that. I’m trying to think of which mother that told me this. She said that her swimming teacher told her not to put those floaty things on the arms because then they are depending on the floaties and they are not learning how to swim. So, there are methods that do that.”

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LS: “Okay, but you won’t throw them in without an adult nearby. There’s still going to be some kind of structure that helps them or holds them. It isn’t going to be, there’s the ocean. Have at it. So, of course there is still a place and much value for services and for all the rehabilitation that we do for anyone who has any kind of disability. That’s the thing about hearing loss, where it overlaps with disability in a lot of ways. But it’s also outside in other ways. It’s important to acknowledge that.

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We have a lot of patients, a lot of listeners where the deafness or hearing loss is maybe the sixth or seventh problem or maybe I won’t say problem, just something that they are dealing with: medically or other intellectual disabilities that are really at play. So, as much as I appreciate and really respect this approach, we just need to also say that it’s not for every child that everything is a challenge that we can overcome. Sometimes, there are things we are going to have to get services for.”

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CK: “Okay, but I’d like to say, even my parents took me to speech therapy once a week for many years. I did benefit from those services. Just to add to that, especially with any kind of disability, the truth is we really don’t know what a person is capable of, including your children. So, even if you are going to get help and for these services, don’t limit, you don’t know what they are capable of doing. Don’t decide for your child where he can reach and what his limits are. You do not know, we are not God. We don’t know what our children’s limits are, even based on experience.

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Every child is different, some children will push further and reach. It’s very important to go in it open minded and just keep the doors open. Knowing that he is capable, my main line is that he is capable of so much more than what he is showing you. Whether or not you are getting services, just know that he is capable of so much more. He naturally wants to. It’s a natural desire to want to try as much as possible and to join the society, just like a healthy child does when he starts to crawl, walk and talk. The same thing here.”

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LS: “Yeah, exactly. And I think, like you said before, that it’s our fear that we’re not capable in the same exact line. Parents are more capable than they know for themselves.”

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CK: “Of course. Also, when you are dealing with disability, they will need to figure it out. Sometimes, just letting go of the rope a little bit, you know. Just let them explore, let them try. I once saw a video of someone with CP (Cerebral Palsy), I don’t remember his name, sorry I don’t remember. But he explained when getting ready for school one, he was in the room just doing it by himself. She would not come in the room to help him. It took him a long to get his socks on and everything on. But he did it. She just waited and waited. She was able to do that. To give him the time and all the time he needed to get dressed.

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Like I said, you have that fear and you don’t want them to struggle but on the other hand, if they do succeed in doing it, it’s an amazing accomplishment for them. So, being able to take a step aside is hard. Telling a parent to just take a step aside is hard. That’s sometimes the hardest thing. You want to jump in and help but sometimes the best thing is not to.”

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LS: “Wow, you are absolutely right. I hope that maybe the listeners will get some inspiration and get a load of confidence for themselves in their abilities and opportunities for their children.”

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CK: “Right, definitely.”

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LS: “Would you, I mean you have already given us so much advice, but is there like one message, the takeaway to end us off, what would you say?”

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CK: “I would say, there is nothing wrong with having high expectations. Don’t put a stamp on your child, even with all the diagnosis and all the things that are written about him, there’s still so much more beyond. We ourselves don’t pursue our potentials so our children can definitely reach much more than what you see. That’s my main line, what you see is not all there is. There is so much more. Don’t put a stamp on him and don’t limit your expectations. Why not raise your expectations?!

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I have a teacher that taught my children when they were in kindergarten, in nursery when they were three. She taught them the body parts. And she told me, I also threw in there the organs and taught them about the heart. I couldn’t believe that my three year old twins came home knowing about the lungs and the heart. It was unbelievable. And she said, yeah I push up a higher level and I teach it. If they get it, they get it. If they don’t, they don’t. I always give them a little higher. Always aim for a little higher. Don’t be afraid to aim for higher. That’s okay. It’s up to them. If they want to, they’ll take it. If they don’t, they don’t.”

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LS: “Okay, I have a question for you. Have you looked into cochlear implant surgery?”

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CK: “Oh, I’m glad you addressed that. I wanted to address that as well. I have two cochlear implants.”

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LS: “Oh, when did you do that?”

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CK: “I totally left that out. It came into my head to talk about it and then we got distracted. This is what I thought about when you were talking about the phone. Anyways, thank God, I am able to use a phone. In general, I’m able to use a phone. And when the triplets were, I don’t remember how old, but I had the baby who was eleven months. He was eleven months and I couldn’t hear. My hearing went down drastically. My good ear became really bad. I couldn’t hear on the phone at all, I couldn’t make a single phone call which was really hard for me, because like I said to you, I like to be really independent. I like to take care of myself and I lost that. There was no WhatsApp or SMSs back then so that was really hard. I remember calling my mom and saying that I needed her help to make phone calls. I really didn’t like that. That’s one thing.

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My parents wanted me to do the cochlear implants when I was in high school but I didn’t want to. Because me, miss independent wanted to be like everyone else and didn’t want to do surgery. I felt like I was doing so well. I felt like I didn’t need it. That was good when you are not responsible for other people, and you’re only responsible for yourself.

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When you have children, and for example, you can’t hear them unless they are in the room with them. If I’m in the kitchen washing dishes, I couldn’t hear. This was with the hearing aids and before I lost more hearing. I couldn’t hear from one room to the next. They’re playing in one room and I’m in another, I don’t hear them. If I’m washing the dishes, I don’t hear them. Like I did not hear them. When I was walking home from gan (kindergarten) with them, I could not hear what they were telling me. I told them they had to wait until we get home and then you’ll tell me. All of these situations that I didn’t hear them, and I did feel a little helpless. Like, I did feel this wasn’t good. I don’t have control. I have four little children and I really didn’t feel like I could handle the situation. So, that was one and then when my hearing went down drastically, I said, that’s it. I have to do the cochlear implants. I have no choice.

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I went to do it and my baby was fifteen months old. I booked the surgery right away. He was eleven months when I decided and when he was fifteen months, I did the surgery. I only did it in one ear to start with. It wasn’t common to do it in both ears at once, so we did one ear and it was life changing. Life changing! I thought I was doing so well before with the hearing aids, but I realized how much I was missing. Hearing the children from one room to the next. I was toilet training them and they would call me from the bathroom and say that they finished. I could hear them so I could come. It’s like you said before that listening can be very tiring. And I didn’t realize how much energy I put in to listening. I didn’t realize it. I wasn’t aware of it because that’s what I did.

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Once I did the cochlear implant, it was like the sounds would just come to my ear. That’s what I felt like, like it’s here. I don’t have to work hard to hear it. It was unbelievable. I could not believe it and thought why didn’t I listen to my parents and do this sooner. Lot of sounds. I could walk with them to gan and hear my kid talking to me and telling me stories and hold their hand and have a conversation. I could hear the birds, I could hear my husband chewing on his food, which I never heard before.”

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LS: “Hahaha. Do you want to hear him chewing his food?”

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CK: “Now, the brain gets used to it. You don’t hear it anymore. In the beginning, it was so loud. I was like, ‘I can’t eat, you’re so loud.’ It was really amazing. Also, I realized that I wasn’t hearing people’s names properly. I discovered that one of my husband’s uncle’s name, I thought it was Derall, but it was Gerald. I was just discovering new sounds all the time.”

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LS: “So, when did you get the second one?”

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CK: “The second one, I did a few years later. I don’t remember the exact amount of years between them but it was quite a few years later. And now I don’t know how I did it with just one. With two, it’s amazing. It’s life changing. Completely life changing. I don’t think I could do zoom if I didn’t have the cochlear implants. I have to say that in the beginning of the Corona, already a while ago, people told me, ‘why don’t you try doing zoom so you can reach people out of Israel?’ I was too scared to. I didn’t think I could do it because of the hearing but now Corona just threw it in my face. I didn’t have a choice. I had three groups going at the same time. I didn’t want to cancel them. I had to move them to zoom and I just did it. Hashem (God) threw out this challenge and I did it and I overcame it. I did it and I’m so proud of myself that I was able to do that. I actually enjoy to see everyone’s face.”

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LS: “Yeah. Do you have the audio streaming sometimes so that it goes direct?”

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CK: “Yeah, I have that and I have for only one year, I have it. The other one, it doesn’t come with it, it’s not an advanced version. So, I have it for one year and I use it to talk on the phone, I use it to watch or listen to music. That’s huge. It’s a new one for me. I just bought it a few months ago. It’s huge. I get to listen to music while I’m cooking or exercising. It’s very good.”

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LS: “Thank you so much for sharing your message with us today. I’m going to link in the show notes your Facebook page if anybody would like to reach out to you. Again, thank you for coming and sharing your message with all of us.”

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CK: “My pleasure. It was great to meet you. Great to talk to you.”

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Thank you for being listeners of the All About Audiology podcast. You can find full transcripts of every episode at allaboutaudiology.com. Come and join us on Instagram and Facebook. Thank you so much for being a listener.

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post All About Believing in Your Child- Episode 51 with Chaya Klughaupt appeared first on All About Audiology.

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Read the full transcript here

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As parents, you go to the ends of the earth to make sure your child has all of the services they need – but what are you doing to care for yourself at the same time?

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Today I’m joined by my husband, family physician Dr. Yona Saperstein. Throughout the episode, we chat about the importance of seeking help when you find yourself facing mental health issues and why the stigma surrounding therapy should be a thing of the past.

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This week on All About Audiology:

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For more resources and research visit:

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All About Audiology Website

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www.allaboutaudiology.com

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All About Audiology Facebook group 

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https://www.facebook.com/groups/470583160143167/about

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AllAbout Audiology Instagram

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allaboutaudiologypodcast

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Mentioned in this episode:

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Married To Doctors Podcast – Episode Featuring Lilach and Yona

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Listen Next/Related Episodes

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Next time on All About Audiology: 

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Episode 51 – All About Believing in Your Child – with guest Chaya Klughaupt

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Transcript:

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and on this show, we don’t just talk about audiology, about x’s and o’s, about audiograms and all the tests that we do. We actually want to know, what does audiology have to do with YOU?! With your life, with your child, with your loved ones.

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So, today’s episode is going to be an All About YOU! episode. I would like to talk about therapy. We constantly hear about how are we going to care for our children, how are we going to keep up with their intense schedule of all their interventions, especially if your child has a diagnosis or several diagnosis. You’ve got PT and OT, physical therapy and occupational therapy. Maybe they have a reading specialist, maybe they have an extra tutor. Maybe they have an orthopedist and all their medical specialists, from GI to pulmonogoly and cardiology. The list is going to go on and on of all the things that you are managing for your child’s health. You will go to the ends of the earth to make sure that your child will be healthy and safe and supported and get all the services that they deserve, all in vision and in pursuit of your child having an awesome life.

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So, my question to you is, what are you doing for yourself with as equal amount of passion and love to care for YOU? I talk to a lot of parents, parents whose children have hearing loss, other chronic illnesses, and disability. It’s so clear to me that there is this kind of burden placed on a parent, parents in general, but especially in the special needs community saying, you need to prioritize self care. And it’s your problem that you don’t get the support and the resources that you need. You just need a bubble bath, like, no! That’s why I think this topic, truly from my heart, is about therapy and we’re actually going through a little series here of the podcast focusing on mental health.

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I would like to invite a very special guest, someone I love very, very dearly. This is the other Dr. Saperstein, haha, my husband, Dr. Yona Saperstein. He is a family physician and together, the end of medical school is when we met. He was at the end of medical school. I was starting my audiology graduate school and so, together we were also building our marriage, having children and working through med school and residency. So, we have really gone through a lot together, a lot of different challenges and changes, an international move, career changes, all that stuff and a lot of support for each other, mostly for me. Hahaha. Mostly you supporting me.

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But it is time for a little personal deep dive because I feel so connected to the listeners, I feel so connected to my followers. The show is growing and I want to get a little vulnerable in a way that’s going to be really valuable to you and helpful to you. So, let’s jump in!

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Dr. Lilach Saperstein: “Welcome Yona, hello. Why don’t you introduce yourself to all my friends.”

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Dr. Yona Saperstein: “Hello everybody. I’m Dr. Yona Saperstein. I am the husband of your well-known and beloved host, Lilach. As Lilach said, I am a family doctor. I work at a public clinic in Israel. So, basically the reason that Lilach had asked me to be on the podcast is because I had actually come home today and told a story and the story goes like this:

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Around a week ago, I got a call to do a virtual visit, because of the corona virus epidemic, a vast majority of my visits are over the phone. So, I get a request for a phone visit and I called the guy. He’s a guy in his thirties and he works as a security guard. He says, ‘Doctor, for the past couple of months, I feel like I have had a lot of symptoms of depression and anxiety. I’m a normal person and I know how to deal with it but I feel like I’ve had a lot of depression and anxiety. Doctor, can you please give me a referral to see a psychologist and get therapy?’

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I told him that he was very brave and that a lot of times, people who are going through this thing, how therapy is very helpful for these symptoms and a lot of times, it is actually good enough as a treatment in and of itself for anxiety and/or depression. So, I sent him a referral to somebody who was covered under his plan and went on my merry ways to the next patient.

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Around a week later, that was today actually, I get another request to call the same patient. He says, ‘Doctor, I’m working as a security guard and I might change jobs. Does the fact that I’m seeing a therapist, are they going to see that if I change jobs, are they going to see that for the next security agency that I work for? Is that going to make me a bad candidate because I am seeing a therapist?’ “

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LS: “And especially, you should mention that for a lot of these jobs, government jobs, security jobs, they’ll do an extensive background check. So, then you’ll have to sign off and they could get access to your medical records and all sorts of things.”

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YS: “So, I told the patient that, ‘On the one hand, I do not work in the field of security or government so I can’t really tell. But on the other hand, anybody who is in the medical field of like any sort would know that somebody who is feeling feelings like these, depression or anxiety or something is not right, that therapy is the smartest thing that they can do to take care of themselves. And the people who are seeing therapists are actually a lot more healthy and self aware and have a lot more inner mental and physical health, than those who hide their traumas, push their traumas down and refuse to seek therapy. They are probably the ones who need it the most, and in my opinion would be less of a candidate for a security job.’

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So, this is what I said to the patient over the phone. I can hear him say, ‘hmm, that’s a very interesting point.’ So, that was the point of the story as to why Lilach invited me on to her podcast. I give you back my wife.”

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LS: “Yeah, this is kind of an impromptu episode that we’re just recording, like we were just talking at the end of the day, where I said, what did you do today, and he said, ‘Oh, I have a story.’ I’m like wait, could you just say that whole thing again, but say it on the podcast. Because not all doctors are caught up with the fact that trauma lives in your body, and you carry it and it comes with you everywhere you go. It’s not that therapy is the only way to kind of process these things and move forward but a lot of times, it’s really just having that time to talk to someone, whose whole entire job is just to listen and reflect you and help you come up with your own coping strategies.

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It’s kind of like being able to hear yourself say things out loud and think about, hey did I think that? I wasn’t aware I was thinking that. Maybe that’s the underlying thought that’s been coming with me, maybe that’s why I screamed at my kid. Or maybe that’s why I have a hard time, like I’m always anxious when we go on drives. That’s an example that’s been with us. I have some PTSD from a car accident that I had. I was like, oh wait a minute, I never put two and two together. Whenever we go on long drives, I’m not so pleasant. Hahaha. I’m like a backseat driver, right?”

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YS: “I decline to comment.”

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LS: “Haha, very wise, very wise. But through the process of being in therapy, I have discovered lots of things about myself which I think have only been to the benefit of myself, our marriage and our family. Would you agree?”

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YS: “Yes.”

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LS: “Haha. When you said, ‘I didn’t always think this way or I wasn’t trained necessarily to have this opinion,’ it came from being married to me. Hahaha.”

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YS: “That’s true. That’s true. As in, I didn’t actually learn that in medical school. It came from life experience.”

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LS: “What did you learn in medical school?”

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YS: “What I did learn in medical school…”

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LS: “I mean about this topic, haha.”

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YS: “I did learn in medical school to memorize. In medical school, you memorize a lot. You memorize the signs of depression, you memorize the signs of anxiety and you learn that the treatment is therapy and pills. But you don’t really get to the nitty and gritty parts of how to talk to a patient and try to figure out from this story whether they need the full treatment. Or even if they don’t meet the actual qualifications of having clinical depression, if the type of patient who, based on their self reflection and their self knowledge, and what they are describing, whether they would benefit from therapy, that’s not just something you just learn by memorizing in medical school. That’s something that you get from life experience. Talking to enough people and figuring out what exactly is the best treatment. You can’t have robots practicing medicine, that’s where you actually need a human being.”

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LS: “AI is probably going to take over. Artificial Intelligence.”

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Hahaha.

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YS: “No, it’s not. It’s not.”

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LS: “It can be used as a tool to support but the creativity, the innovation, the humanity, anyway that’s philosophy for over there. But I do really, really appreciate your input and your perspective. Like we really have been on this journey together through our training. By the way, for our listeners, I will also link in the show notes, a podcast episode that I did on a podcast called, Married To Doctors, which is a great podcast discussing the toll of the training that it takes on the spouse in many cases.

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But I’m really, really emotional and grateful that I am now in a place where I can say, ‘Hey look, therapy really changed my life in a very significant impactful way.’ And I want more people to just break that stigma and be like, really, we’re still talking about that person that needs help? As if that’s a bad thing. Show me a perfect person that doesn’t have some issues or thoughts or questions or challenges. Wouldn’t it be great to have someone who is actually trained to listen and support you and hopefully you can find a good therapist, which is also a topic.

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Yeah, that’s my little soapbox for today.”

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YS: “I’d like to add a little point about what exactly is therapy. Lilach basically mentioned it already but I’ll kind of reiterate what I think of it. A therapist is somebody who is really, really good at listening, assuming the therapist who is actually doing their job. But a therapist is someone who is really good at listening and reflecting and understanding the person and understanding the client. You know, a lot of people are like, what will therapy do? But you know, if the person is like, alright, I think I want to go. If the person feels comfortable with the therapist, the client will basically feel comfortable telling the therapist everything that’s bothering them. The therapist will basically sit in the chair and listen, listen, listen with the body positioning and the eyes and all that stuff. Basically, showing you that they are actually listening in a way that the client actually feels comfortable to actually continue talking. And then at some point, the therapist will find a good time to reflect.

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Basically to reflect upon what the client is thinking and the client will basically feel like yes, this is right. You are understanding me and sometimes just to be able to have the time to speak to someone and feel understood and feel like there is someone who is actually understanding you on a deep level, that itself is an excellent benefit for therapy for many people who feel like, oh everything is just flying on me and nobody gets me. Then the therapist will continue to reflect and try to actually train the client to understand things in a different way, such that they would be able to deal with their own emotions and stuff like that.

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As Lilach said, why is that bothering you and then you try to delve to the issue. Ask a question or two, let the client continue talking. Ask another question or two, let the client continue talking. Only after a while, the therapist will then make a suggestion that will get the client to figure something out. It’s a slow process. Most people will not get all of their issues resolved in one to two therapy sessions. It’s usually a long term relationship between the client and the therapist which builds the therapeutic relationship. However, that is basically from the family doctor’s standpoint. The excellent benefit of therapy for anyone who needs it.”

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LS: “That’s really helpful to be open to also being like, yay maybe someone who is close to you and went to therapy and you ask, how did it go? Are you better now? Like 45 minutes later. No, it’s going to take time and also the person themselves has to want to be on that process and commit to those sessions and commit to also reflecting on the sessions. Not only to think that this is going to be a Band-Aid and we are just going to cover it up. No, you’ve been doing that so what else can you do?”

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YS: “Another point that I was going to make is that not everyone is ready for therapy. So, if you see a friend who is kind of like in a rut, you can’t just be like go see my therapist, go see my therapist. The friend might not be ready. A person has to be ready to open themselves up to the therapist.

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I’ll tell another story. I had a patient come to me with itches on her hand for over ten years. The diagnosis was eczema. Basically an allergic type of reaction of itching on the hands. But she said that she has seen every dermatologist in the state of Israel and she has tried every cream in the world and nothing works. So, of course as her family doctor, I delve in and ask her some more questions. When did this start? It started when her uncle died. So, I mentioned to her that it might be in a way, I wouldn’t say psychosomatic, because a lot of times when people aren’t stressed, they actually have real, physical symptoms that can actually be diagnosed physically due to stress and changes in their mental health. I think she had real eczema but I think it was from her stress.

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Okay, so then I asked her if she ever tried and had therapy. She said, yes. I had therapy once or twice and it opened up in me a lot of things that I didn’t want opened up so I stopped. So, on the one hand, not everyone is ready for therapy. Sometimes, the person isn’t ready to address their traumas. You wait until the patient or client or whoever is ready to start therapy.

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Again, once a person is ready to start, the therapist has to go at the pace of the client. Sometimes, they are willing to delve really fast and sometimes not. However, on the other side of the spectrum was this story where the person tried once or twice to do therapy and wasn’t ready for it at that point. But on the other hand, you saw what happened when they did not open up their traumas, is that they basically kept it in and it exploded as physical symptoms.”

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LS: “Okay, so now I’m a little worried about something but let’s talk about it the whole essential oils, think well and we’ll cure your cancer, you know that whole industry that over-promises everything. By the way these drops will cure everything you’ve had. Okay, you hear what I’m saying. There’s like a very fine line between addressing a mind/body connection and capitalizing, ie: taking advantage of people and try to sell them on the promise that this green shake smoothie with this protein powder or this oil, is going to cure you.

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I’ve heard that also from the hearing loss side where people are like, we are not going to do cochlear implants or get hearing aids or anything because we are praying for a miracle. It’s like, the miracle is in the technology that is available, if that’s the direction you want to go. But the idea that these things could be cured by positive thinking, where do you fit on that question?”

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YS: “Alright, very controversial topic. So, first of all, in terms of protein shakes and pills, I will usually only recommend or prescribe pills that have actually double blinded clinical trials. Which means, that this particular medicine has been shown in multiple studies where they basically have hundreds of thousands of participants in the studies, retrospective or prospective, and everything is the same about everyone except that half got the pill and half didn’t and you see a clinically significant difference which you can clearly attribute to the pill. Those are things that I will actually prescribe medicine for.

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Regarding the, I was going to say snake oil, I’m not sure if that’s the right term to use, but regarding stuff that you buy in vitamin shops and stuff that they advertise online, which this shake will, again, help you and make you feel better, most…”

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LS: “Yeah, it’s going to boost your productivity, make you skinny, make you an athlete, make you not crave food and also help you find the love of your life. All by buying this $45 pill. Hahaha.”

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YS: “$450, Lilach. But reastically, what you have to do before buying any of these shakes and putting money into any of these highly advertised treatments, is check out the studies. Have there been double blinded study of hundreds of thousands of people, half of who took this shake, and half who took water with green food coloring and you have a clinically significant difference between the two groups? Or, you know, they have tried it on people and due to the fact there is sugar and protein, it does make a person have a boost of energy because after all, it does have sugar and protein which will give you an immediate boost of energy and because of that, you will feel better. It’s not that this particular shake has any actual clinically significant studies behind it.

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So, use a little bit of critical thinking before pouring your money into the next miracle shake that you see online, because it might contain sugar and water, and you can probably get the same out of eating a shake at your local supermarket.”

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LS: “Right. So, even though this conversation is quite outside the scope of all about audiology, I do think that it’s really important to talk about. Because, so many times we are willing to try things and buy things and sign up our kids for classes, and like I said in the beginning, basically try anything that is being promised as a way to help us, help our kids, help our family. But here is something that has lots and lots of evidence backing it up. That when you talk to someone and they help you work through your feelings, that actually improves your health.

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That actually improves all those other parts of your life. And it’s expensive too. It does come at a cost, not only paying for it which can be very expensive, but also in terms of time and in terms of the emotional toll that the process itself takes. Sometimes, going to therapy will make you sadder or less productive for some time because you have unearthed those feelings, but it’s for a long term goal. Kind of like when we are doing physical therapy, you do a move that hurts you or makes you uncomfortable, but it’s to strengthen you.

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We talk about this with the balance physical therapy for people who have balance disorders, there is one particular move, the epley maneuver that we can do but it will induce, it will make you dizzy. Somebody who has a severe case, it might even make them throw up. So, they say no, they don’t want to do the therapy. They want to go and just sit still on the couch and not do the physical therapy training because they want to avoid the consequences of it. But if they actually do it and get through it, then it can actually put all those crystals back in place and help them to then lead a functional life, that they are able to resume their normal activity that they had before the onset of the BPPV disbalance disorder.

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So, any last words? I’m so happy you came on the show, I really appreciate it.”

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YS: “My pleasure, Lilach. I’ve been an avid listener ever since you have came out with the show and now it’s been my absolute pleasure to now be a guest on the show. From the footsteps of many well-known and prominent people, you now have a family doctor from the north of Israel, now also getting the honor of being a guest on this show. So, thank you very much Lilach.”

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LS: “Thank you very much for being the composer of our theme song.”

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YS: “Actually, Lilach and I composed it together.

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Lilach laughing.

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I played it on the electric keyboard, but Lilach and I actually composed the music together. So, Lilach also gets credit for that.”

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In conclusion, don’t forget to take care of yourself. You, as the parent to a child with hearing loss, or you as an audiology student, or you as my fellow colleagues in different fields, whoever you are listening to the show, don’t forget that you have service in a lot of places in your life where you give and give and nurture and serve and love. You do a lot. You do a lot. We all do a lot and we can’t forget to also point some of that right back at ourselves.

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There’s lots of different modalities for getting that but for me and many other people, I think therapy is extremely powerful and it is way, way past the time to have that still be a stigma. So, I’d love to hear your thoughts on this conversation. You can find me on Instagram, on Facebook, and on allaboutaudiology.com.

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I am excited for season 5. Oh my goodness, can you imagine we are at the end of season 4?!!!! Every ten episodes when we finish out the season, I like to go back and tell you about the episodes that we had this season. You can go back and listen if you missed them.

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We kicked off the season with episode 41, with just an incredible mother, Madeline Cheney from The Rare Life podcast who came and shared about her journey with her son Kimball. Just so much from the heart with so much vulnerability about her journey, the struggles that she’s had and sharing her wisdom with other parents going through what she’s been going through.

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Episode 42, I kicked off our student office hours, which are on the first Wednesday of every month and that’s where students from around the world, come and do a Q and A session with me. Plus case studies or a presentation about a specific topic. That has been going on the first Wednesday of every month since July, August and September. The next one is going to be on the first Wednesday of October, on October 7th. So, be in touch students. Send me a DM. Come and join the office hours if you are interested. There is also a possibility to get recordings from our previous sessions if you are interested by becoming a patron of the podcast at patreon.com/allaboutaudiology.

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In episode 43, I was so honored to speak with Genia Stephens who has tons of experience with disability advocacy. We talked about creating a vision for your child’s life. This is such an important episode that I think any parent should really have a listen to and think about the concepts we talked about because they can help you in creating a vision for your child’s life. What is the point of all the parenting effort that we put in without having a direction to go in, without knowing where we are trying to go. It was definitely a very meaningful conversation for me and I hope that you will go back to episode 43 and check it out.

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In episode 44, I talked about the online support group for moms which was followed by episode 45 with the lovely Dr. Melissa Karp who shared so much information and practical tips and knowledge about auditory processing disorder and sound sensitivities. That is an episode you should definitely check out if you want to learn more about misophonia or the ways that we process what we hear, beyond just receiving the sound, beyond what our ears do, what does our brain then do with the information that we receive. That is episode 45.

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Then the next three episodes were personal stories of people overcoming, of people sharing their personal experiences. Episode 46 was with Courtenay Turner who talked about being born with congenital hearing loss due to rubella. Now she is like an all star fitness, amazing, resilience person who I really enjoyed hearing her story.

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Episode 47 was long awaited episode and I’m so glad we were able to get it out. That was with Dr. Saunja Burt, an incredible, incredible audiologist that I have learned so much from, from the podcast but also outside of the podcast. Dr. Burt was the first black audiologist to earn the AuD degree. She shared her personal journey to the AuD, to becoming an audiologist. A lot of tips for students in there and we also touched on the systemic barriers that exist in education and in healthcare for black people, indigenous people, and people of color.

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These are conversations that we have to be having. That it is incredibly important for us not to continue to live in some kind of denial of what is happening in our world but to deny that they are occurring, even in our own spaces, in our educational institutions and as healthcare providers. These are things that we must address, that we must educate ourselves on and learn about the experiences of our patients and colleagues and friends when they share them with us and also it’s not their responsibility to do that. So, I want to thank Dr. Burt for coming on the show and sharing her story with us.

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In the episode that followed, episode 48, we heard from Jacquelyn Briggs about her unilateral hearing loss and becoming a cochlear implant user after she lost the hearing in one ear due to a car accident. What a journey. How much wisdom, how much inspiration and now she works with children who she can relate to in a very unique way. Children who use hearing aids or cochlear implants and she’s a teacher who incorporates lots of dance and music in her curriculum. That was a super fun episode and it was wonderful to meet you Jacquelyn and hear your story.

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In episode 49, we got to hear another unique story with Natalia Popham about her experience having a reverse slope hearing loss. It’s more hearing loss in the lower frequencies and how that affected her ability to develop language and also her journey in learning to advocate for herself which is one of the major, major messages that I hope to impart with this show.

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Like I said, you gotta take care of yourself. You got to believe that you can, believe that you deserve everything good and that your children do as well, and fight for them.

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That was our season 4 wrap up. Season 5 is coming with amazing, incredible new things. I know I always use those adjectives but it’s because of my enthusiasm and excitement for what is coming. Stay tuned for more!

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post All About Therapy w/ Family Physician Dr. Yona Saperstein- Episode 50 – Season 4 Wrap-Up appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. I’m an audiologist, a speaker, a podcaster, a parent coach. I do lots of things within this mission of helping people understand: What is hearing? What is hearing loss? What are the impacts of audiology on our day to day lives, in our relationships, and in our ability to communicate and learn. So, we try to take a really big, open, inclusive approach here but I’m always constantly learning. And I want you to know that I’m so grateful for all of you who send me messages on Instagram, on Facebook, and through email. Yes, I am just so blown away by the reach and community that this podcast is creating.

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I also would like to tell you, very transparently, that I have not had any sponsors to the show. This is something that is completely self-funded and it really, truly makes a difference if you are able, if you are interested, if the podcast brings you value to become a patron on patreon.com/allaboutaudiology. There are some great perks over there to people who become patrons.

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A shout out to Darla who is the first and awesome patron that I have for the show that helps to cover the hosting, the editing, all the time of bringing the guests and producing this show. And in addition, I also want to let you know, that in the past several months, I’ve been doing these workshops with chapters of organizations, specifically with Hands and Voices. But also with other groups, parent groups, other speech therapists. Different workshop topics that can be customized or a topic that I have prepared. And the goal of these workshops is to really dive in to your experience with audiology. Whether it’s a specific topic, like winter is coming and we need to talk about middle ear stuff and how are we going to prevent it and treat it. And what is the whole story with all these ear infections. That’s one topic.

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But one of my most popular workshops is the F-I-G Method for Advocacy, which is really an incredible tool that once I explain it and teach it and we work through the workshop, people have a sense that it is useful immediately. That they can apply it to the situations that they are in, that are upsetting, that are difficult, that are challenging right away. Today! They can go and decide what is the conversation that they need to have or not in the world of advocacy.

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I also have another workshop that I offer is about breaking the stigma around hearing loss. So many communities have a lot of internalized ableism and issues around what it means to have a disability or how do we treat someone, even within our own family. How do we accept that news? The feeling of grief, sometimes in itself, is a little bit problematic. Someone will say, why are you grieving this thing that other people might celebrate. But everyone goes through their own challenges and has their own history and has their own experience. That is what is so important.

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So, if you or your organization, your school, your parent group, anybody who is interested, please contact me and we’ll set up a workshop that is exactly customized to your members, to your group and to your needs. It will help you feel that sense of possibility, the sense that you can do it, and you’re doing an amazing job for yourself, your family or your students. So, feel free to be in touch and we can create an amazing workshop or even series of workshops for you.

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With that being said I’m excited to jump into this episode with Natalia Popham, and we actually recorded this episode many, many months ago and then it resurfaced to me that it never made it into the podcast. Natalia reached out to me recently that she is considering studying audiology. Her story is phenomenal and I’m really excited for you to hear it. So, here we go. Welcome to the show.

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and today on the podcast, I have a guest. Natalia Popham is going to share her story with a very specific and unique kind of hearing loss and I think it will be very interesting and informative for our listeners.

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Dr. Saperstein: “Welcome Natalia!”

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Natalia Popham: “Hi, it’s great to be on. I’ll just tell you a little bit about my background and let me know if you have questions or anything. When I was two, my mom took me to a hearing screening. She saw a free hearing screening in the newspaper and she says that she’s not sure if she had an inkling that something was going on or if she just took me because it was a free screening. But when I went, the audiologist that did it said that there were things that I was missing. That I was such an active two year old, they couldn’t be sure that it was hearing loss or that I wasn’t focused and paying attention. They said she should take me back when I was older because there were some red flags but they thought I might just be very active.

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I had a little brother the next year and my parents were kind of noticing that she doesn’t respond when her brother responds to the same thing. So, they started testing it. Kind of noticed that there might be something, but life got busy. A couple of years later, right before kindergarten, they did a routine hearing screening for all the kids and that’s when they figured out that I did have hearing loss. At the time it was more mild to moderate, so they wanted to just see how I did with hearing aids.”

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LS: “What did your parents say, like if you can remember if they told you, what kind of things were you missing? What were the behaviors or the sounds?”

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NP: “Yeah, so with reverse slope hearing loss, it’s changed over the years but at the time, it was mostly just the low frequencies. Mild to moderate hearing loss and I don’t know exactly what decibel it was at the time. Sounds that I was missing were things like “M and N”. I can’t tell the difference between them. I think the sounds that I understand the best are “Tuh, Suh”. Those kinds of sounds up in the high frequencies. They thought maybe I was just being silly and not listening very closely because I would get things wrong that they were saying to me. Or they thought I wasn’t being that obedient. So, they went to the audiologist and actually realized, oh, there is a hearing loss.”

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LS: “Yeah. Okay, so let’s just take a moment and explain reverse slope hearing loss. So, we have the audiogram from low frequency sounds to high frequency sounds. And when we do a hearing test we check all those different frequencies that contain all the different sounds of speech because we want to make sure that you can hear all of them. And a typical hearing loss, most of the time, it is sloping, meaning it goes down in the higher frequencies, so that someone can hear those low frequency sounds like vowel sounds. But they actually miss those super high frequencies like, “S, Th, F”. Those are the high frequency sounds. That’s more of a typical hearing loss. Or there is flat, where it’s the same amount of hearing loss across all those sounds. And it’s a little more unusual to have a reverse slope hearing loss where it’s more hearing loss in the lower frequencies. That’s good that you mentioned and you were able to pinpoint that the “M and N” are very similar letters and they are both low frequency.

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So, you had that diagnosis right off the bat, during kindergarten age, before you went into kindergarten?”

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NP: “So, I went to kindergarten and they got me these green translucent hearing aids that they got me really excited about. So, I wore them for a few years and did well with them. I was very outgoing and precocious and my parents very much made my hearing loss not a big deal. It was just part of life and I do think that’s how it should be. But I think that really helped me see that it wasn’t a big deal. It was just part of my life. I had the support that I needed. They always talked to my teachers at the beginning of the year. They would tell them this is what is going on. Please make sure that you’re facing my daughter when you are talking to her and that she’s in the front of the classroom, things like that. Even if I missed something hearing it, I generally knew what was going on.

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Upper elementary and middle school, I started getting more embarrassed because that’s the age you don’t want to be different or anything like that. I thought that I could get away without hearing aids so I would try to do that. My parents let me for a time, they kind of made it my choice as long as I was doing well in school. I did alright but I missed a lot of what was going on as far as conversations, but with doing homework, paying attention and reading books, I was able to keep up until high school. I think my parents started getting worried and told me to start wearing my hearing aids.”

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LS: “So, besides for academically, did you also feel it in social situations?”

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NP: “You know, when I was a kid, I don’t think I noticed it as much because I just wanted to read my book and just be left alone. So, I don’t know if I noticed it very much until I started getting a little older and wanted to understand more of what was going on with my peers and make friends. I had friends but I don’t think I noticed it as much or cared as much when I was younger.”

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LS: “Yeah, we hear that a lot from parents of that middle school age, like fourth or fifth grade it starts and it starts to be a bigger deal. Kids don’t know what they are missing, anyone with hearing loss doesn’t know what they are missing because they missed it.”

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NP: “Right. I think I had no idea what I was missing too. I didn’t realize that I was missing so much during that time and to me, like I said, I was embarrassed by it. I wish I hadn’t been but I was. Just at that age. I thought the payoff was that I don’t look different, no one will know. But I’m sure people were like, of course, why doesn’t shecome and sing?”

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LS: “But then you miss the whispers and the jokes and the things that go on and you’re getting the social equivalent of missing out on those things. But you know, we were all kids once.”

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NP: “You know, something interesting that I’ve learned, I didn’t know that reverse slope hearing loss was less common and so a couple years ago I started doing my own research because I wasn’t getting very good answers at the time. Something that I learned was that a lot of times with reverse slope hearing loss, we perceive sounds differently than other people and I never knew that. But it made a lot of sense when I found that out too. So, I really didn’t understand what I was missing or what things were supposed to sound like.”

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LS: “What kind of sounds, specifically if you have an idea?”

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NP: “Yeah, so my husband is a musician, a singer. He actually noticed, because I’ve had voice training but was never really successful with it since I couldn’t really hear very well. He noticed that when I would sing, it would be accurate but not correct because I was hearing differently than what the music was. It would be consistent because I thought I was hearing one thing but really the music was another thing. Since I had never heard what would be considered an average hearing, I don’t know exactly how it’s different. I thought that was interesting. I sing to pitches.”

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LS: “Do you mean the pitches?”

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NP: “Yes.”

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LS: “Wow, that’s very interesting. Okay, so take us back to high school. After your middle school break, did you bring them back in high school?”

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NP: “Yes. My family moved to a different state in high school, and at that point I had realized in middle school how much I needed my hearing aids and I think I had gotten to the point of being willing to try them again because I didn’t want to miss out. Especially with moving, I didn’t want to start out not having a clue of what people were saying or conversations going on. So, I asked my parents to get me some new hearing aids in high school, which they did.”

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LS: “They weren’t green and sparkly? Haha.”

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NP: “No, they weren’t green and sparkly. They were actually purple. Haha. I thought that was kind of fun at the time. I was ready to be in a new place in life where I wasn’t going to be so self-conscious. You know, it doesn’t always work out great in high school but I wanted to try.”

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LS: “Keep going. We want to hear more about your life. Hehehe.”

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NP: “So, I went through high school and was wearing aids. My mom asked me over the years, in different times if I wanted to learn American Sign Language and I wish, now as an adult, that I had taken her up on it. Because now I’m trying to learn it because my hearing has gotten a lot worse and I realized how amazing ASL is. But at the time, I turned her down because I didn’t know anyone who signed and I saw it as, again, something that would make me different and didn’t really see the benefit of it because I wasn’t immersed in the deaf community at all.

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Some things that helped me to be successful in school and social situations as well was teaching people what I needed: For them to face me, have good lighting, if they are close to me and I can see them, then I could read their lips. Things like that would help. And even though I didn’t learn sign language, between advocating for myself, which can be hard to learn as a young person. Sometimes, I did it well. Sometimes, I didn’t do it well at all and should have spoken up more. There were a lot of years where I missed a lot of things because I didn’t speak up for myself. But that’s something I’ve learned as an adult, it is worth it to say something because I want to know what’s going on and be involved in the situation.”

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LS: “That’s so powerful. Self-advocacy is one of those things that is very hard, like you said to speak up for yourself and have the confidence to say what you need. I love the way you said it, “teach them what I need.” It’s true. People need education and don’t know what you need unless you tell them.”

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NP: “Right. I think in the beginning it was really hard to advocate for myself because I didn’t know what I needed or I felt like I was being pushy. But then I was just missing out so over they years, I have learned that I do need to do that and it’s not pushy if I say it in a nice way, like hey, can you please move your hands from your mouth, I need to be able to read your lips. Something like that. I’m really lucky, my friends and family have been really good about that.

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Something about reverse slope hearing loss is that a lot of times, our speech is very normal, so people don’t realize that we have hearing loss. For me, the easiest voices to understand are women with high pitched voices, who speak loudly. I can’t really hear children or men very well. I know it’s different for everyone depending on what frequencies their hearing loss is in. Even as an adult, I’m a teacher and I teach third and fourth grade, I have had to learn how to teach my students how to speak to me because I can’t hear children’s voices very well. So, they know they need to be right in front of me and I need to be able to see them.

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I think having hearing loss has actually helped me a lot as a teacher because it has helped me be very aware of my environment because if you can’t hear, you have to be very aware of what’s going on when you are teaching a class to little kids. I do believe that it’s something that God has allowed to be in my life because it’s changed who I am as a person from who I would have been otherwise. I think it’s taught me, first of all about self-advocacy and confidence and also being aware of my surroundings…”

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LS: “In a previous episode, we were talking about how children who have hearing loss actually sometimes tend to be really good communicators because they had so much focus growing up. They had therapies, they had people, and IEP meetings and communication strategies. People were always focusing on them so that they can be able to communicate. So, sometimes, they come out ahead in that arena specifically which might seem counter-intuitive, but we’ve seen that.”

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NP: “Definitely. I think you have to put in so much focus on communicating that it becomes second nature after so many years of working hard on it.”

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LS: “So, what happened after high school?”

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NP: “Back and forth. Most of the time, I was sold on it. I still got a little self-conscious, because you know it’s those teen years, but it was worth it for me at this point because I realized I still needed them. I was trying to do AP classes and do well in school, I was involved in a lot of things so I needed to know what was going on.

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In college, I started learning more about my hearing loss and kind of realizing that everyone, whether they have some sort of physical or mental disability, whether they have something in their past, everyone has something. So, I started realizing, this is okay. This is part of who I am, but it doesn’t make me better or worse, it’s just part of my life. Just in college, meeting more people and having that realization. So, I had some services from the disability support services, like having a note taker because I couldn’t really read the professor’s lips and take notes very well. Things like that. I kept wearing my hearing aids. It wasn’t really a big thing in the center of my mind very much, there was so much more going on in school, that it was just part of my life.

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After college, I got married right after. A couple years ago, I had my first child and my hearing started getting a lot worse. We don’t actually know what was the cause of my hearing loss. My great grandma was adopted so it’s possible that it’s genetic and they just don’t know. They also said it could be viral, they just never knew. They ruled out things like otosclerosis in the ears that could form reverse slope hearing loss. So, we don’t know what caused it. But it started getting a bit worse and I remember when my son was about one and a half, there was a two week period where my mother in law, my husband and my best friend all told me that they think my hearing was getting worse, you should get it checked.

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So, I went to the audiologist I was seeing at the time and she just turned up my hearing aids without testing my hearing or anything. She just kind of turned them up a little bit and was like, okay try it. So, I went, which was not, for your listeners Lilach will say this, it’s not the best.”

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LS: “Yes, my mouth is agape. You can’t see me but, oh my gosh, yes, always ask for an updated test, especially if you think there has been a change. Oy oy oy.”

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NP: “But I also did not know what was best. I had been to audiologists every year all my life. But I was a kid, I wasn’t trained. I wasn’t a professional so I didn’t know what best practices were or what should be done. So, I went back after, I can’t remember how much longer, maybe a few weeks or a few months, and I was like, I’m still having a lot of trouble with the hearing aids. Sounds were louder but I’m really not understanding much of anything. I’m almost purely relying on lip reading. So, she did a hearing test and it had changed, only about 15 decibels, and my hearing had been tested less than a year ago, so that was still, well she told me it was a significant change. But she basically said, hmm, I don’t know why that is but I wouldn’t worry about it.”

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LS: “So, for our listeners, if it’s 5 dB change, that’s test/retest reliability. That means you do the test today, and you do it tomorrow. Maybe you’re tired, maybe you’re a little less focused. 5 dB up or down isn’t really that significant. But 15 dB certainly is a change, especially if it’s at more than one frequency AND coupled with your own reporting that this is a big change. So, just FYI right there.”

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NP: “Yes, so that was bad. I was starting to get the sense of that, even though I didn’t really know yet. So, I started doing research on my own. I was frustrated. I felt blown off because I don’t know what she meant to communicate, but what I heard was, oh it’s changed a lot but it’ll be fine. Don’t worry about it. That’s what I heard. I’m sure that’s not what she meant. But, I started doing my own research just reading a lot of articles by audiologists and even using YouTube. I found Dr. Lilach Saperstein’s podcast actually because I was researching audiologists to try to learn more just about hearing and hearing loss.

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As I was researching my own hearing loss, I started getting more and more intrigued about how hearing works and how amplification works. I had no idea that there is such a diversity of people’s experience with hearing loss. I hadn’t even known that mine was rare until I started doing research and realizing but I think the number was one in 12,000 people with hearing loss have this kind. And my understanding was that it’s not for better or worse, it’s just unusual. But as I was doing my own research, I started just finding people who are really passionate about making sure that people who are going through this journey, understand what’s going on and are able to have resources. That was hugely helpful to me.

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I found a YouTube channel with Dr. Cliff, and he does a lot of education. But through watching his videos, I realized that I had not, through all my years of audiology experience, I hadn’t had some of the basic best practices done like real ear measures and things like that. I actually went and found a different provider who I had seen good ratings for online and I saw that she does some of these best practices, that now I know what to look for.”

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LS: “I am so proud of you because that takes a lot of courage. Because, you know, you buy hearing aids through one person and they are licensed, they have a whole practice, so why shouldn’t you trust them? But if you don’t like it or you don’t feel comfortable or if you find out that something is off, it takes a lot of courage to say, I’m gonna get another opinion. I’m gonna hear from someone else. That’s really brave, good for you!!!”

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NP: “Thank you. I think I was just really frustrated enough with my experience so I wanted to look for something that was going to work.”

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LS: “The same audiologist who changed your hearing aids without doing a test, and then did the test and told you not to worry about it and also wasn’t doing real ear measurements in her office…”

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NP: “Yes.”

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LS: “So, for those of you who don’t know, real ear measurements, REM, is a way to test if the hearing aids are giving enough amplification or giving enough louder sounds, making sounds louder specifically to your hearing loss, specifically in your ear. So, they put a tiny, little microphone in a tube on the other end of your hearing aid inside your ear and then make sure the settings in the computer match exactly how they are supposed to to the targets in the software. It’s definitely a best practice to have REM if you have hearing aids.”

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NP: “Yes, and it turns out that it was very critical that she had not done those. Because I went to my new audiologist and that was the first thing she did and she said, oh goodness, these hearing aids are broken. Basically, they were only amplifying the high frequencies which is exactly what I don’t need. Because for me, the portion of my hearing where the loss is more mild, still there is a loss but it’s more mild, is like 8,000 hertz. For that to be the only part being amplified, no wonder I was missing almost everything. So, it wasn’t amplifying any of the mid or low frequencies that I needed. So, she kind of talked to me about what my options were which I appreciated. In the past, it was always like, here’s the hearing aids that I think you should get, here’s the dome, good day.

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So, she talked to me about what my options were. She said that I could send them in to be fixed. She talked to me about what that would cost and what that would look like for my hearing prescription. She did also say that I could choose to get new hearing aids because the kind that I had were not a good fit for my hearing loss. First of all, for my particular hearing loss, I needed to have ear molds. I had just the little domes and they were letting out a lot of sound. They weren’t nearly powerful enough and they weren’t on the computer fitted to my prescription, they were fitted more to a regular high frequency loss. So, no wonder I was having all this frustration with them.

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So, I did decide to just get new hearing aids because I wanted some that I knew would work, and were a little better and higher quality. Because I have an active, and busy lifestyle so for me that was worth it. And for the ear molds that I needed, so this audiologist was great. Even though it didn’t benefit her, she showed me that I qualified for this Starkey Hearing Out program where they helped pay for my hearing aids, it was awesome. I remember telling all my friends and family, keep this in your prayers. I’m applying to this but I don’t know if I’ll get it. And then when I sent in my application because it was paperwork and all that, they said it would probably take a couple of months to get back to me, that was the normal. I heard back two weeks later that I had gotten accepted and then I was able to get the ball rolling really quickly. For me it was so amazing because I’m a mom of two young kids now, at the time was only one, working full time, busy otherwise. So, it just helped so much to make life easier to have that piece of equipment working.”

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LS: “That’s amazing. Really good for you. Then when you got the new hearing aids, did you feel that there was a significant difference?”

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NP: “Yes, the funny thing is that I was thinking that even though my hearing had changed and it had been better in the past, I was now hearing better than I remember hearing before because I just had technology that was functioning properly. And my audiologist, I don’t know exactly how she programmed mine, but I know that she did not just take the factory settings that they have. I think she went from the ground up because my hearing loss is the opposite of what it normally is, she adjusted it to what it should be for mine, not just what the hearing aid manufacturer said it should be.”

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LS: “Exactly. So, there is something called first fit, which is what the computer just offers you right off the bat. And then there is fine tuning, where you can go in and really set based on different frequencies. And when you are doing REM, you can get really accurate fine tuning on the hearing aid programming. That’s very, very important, specifically for unique kind of hearing losses. And there’s actually something, we have a lot of audiology students who listen to the podcast, so this might not apply or be interesting to everybody, but I know the students who are learning are always grabbing on to this stuff. They are excited about it just like I was in school and never lost, I continue to be excited.

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There is a concept called the upward spread of masking. The upward spread of masking means that if you give a lot of amplification in low frequencies, it can actually be detrimental in the high frequencies. It can affect, too much gain in the lows can actually start to mask and cover up the gain that’s in the high frequencies. And that’s just a natural phenomenon in acoustics and in our ear. So, when you have reverse slope hearing loss, it’s very difficult to be careful not to over-amplify because if you over-amplify the lows, you get this upward spread of masking going into the higher frequencies. You have to do a lot of fine tuning to avoid that.

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Done with technicalities, back to your story.”

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NP: “Right, those are the things that I just started to learn about from my research and had been getting so interested in and fascinated in learning more. My experience when I got these new hearing aids that maybe for the first time were fit properly was that I was hearing sounds that I had never heard before, or at least didn’t remember ever hearing before. A lot of it was background sounds that I had forgotten about, like the road, appliances and even just, I didn’t realize and this part was kind of a bittersweet. I didn’t realize how much with my son, my really little boy that I wasn’t hearing him or understanding him. So, that’s something where I noticed a big difference, just in communication with people as well. I think that I still do struggle with my hearing aids in certain situations, like if there is more than one person talking. It’s still such a huge difference just having them fit properly.”

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LS: “That’s really great. And a very important point that you bring up about how hearing aids are not going to be perfect and helpful in every situation. If there is a lot of talkers, if you are in a room that’s really noisy… Sometimes we have patients come in and say, well I was at a wedding and it was very hard to hear. Yes, everyone, even people who have typical hearing have trouble hearing at a wedding. There’s very loud music with the band playing, there are about 100 people talking, people clinking glasses, in a big reverberant hall. That’s really not an ideal communicative situation. It will be more challenging obviously for someone who has a hearing loss, but it’s not the place to decide if your hearing aids are doing what they should be doing. That’s a challenging place. So, it’s really good that you’re also able to evaluate how well they are helping you with some realistic expectations, like in the gym while everyone’s playing dodge ball, it’s going to be very hard to hear the students.

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I think you have very good classroom decorum, can you tell us a little bit more about how you talk to your students and keep them talking to you one at a time and keep them facing you, and all of that?”

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NP: “Yes, it has helped my classroom management quite a bit. My first year of teaching was, for anyone, a hard experience. It helped prepare me for being a better teacher now. But my first year of teaching, I did not know very much about classroom management and I didn’t know how to tell my students to speak to me. And it was middle school at a more challenging school so there were all these factors. But since that time, I’ve learned a few things that have helped me as a teacher just to be able to manage them better, teach them about my hearing loss and not make it in a way that they are going to take advantage of me or something. Kids are mostly good but everyone has their moments.

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So, at the beginning of the year, I just tell my students a little bit about me in general and I learn a little bit about them. The first couple of days, we are kind of setting up the expectations for your classroom, getting to know your students and getting them to know you. Most teachers that I know do that. So, as I’m doing that, one of the things that I tell them is that I’m hard of hearing, I can’t hear very well in either of my ears. I wear hearing aids and lip read. Here are some things that I expect from you like the regular things like raising your hand when you want to speak, but also I tell them I need them to look at me when they are talking, I need to be able to see your mouth because I rely on lip reading with my hearing aids. Also, something as an adult, I have been learning sign language so I teach them some sign language too. Because sometimes with all the sounds going on, I still can’t understand them because there are other classes next door, kids will drop pencils or shuffle papers, things like that. Just sounds that you can’t avoid.

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So, I’ve taught them some signs to use like if they want to use the restroom or get water or if they need help with something, I’ve taught them just some basic signs so then I know the kind of general idea of what they need. Then I can talk to them more, get closer and figure out exactly what they need if it’s more complex.”

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LS: “That’s so valuable. That’s so helpful to have another mode of communication. The thing that comes up for me when you talk about that is kind of like a little pinch about how so many children who are deaf and hard of hearing don’t get access to sign language. They are the kids that really would benefit from it and rely on it. It’s so obvious to many of us that lots of people would benefit from having additional visual communication, even just basic signs in lots of situations. So, that’s where my heart goes out to that issue in the world of deaf education.

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But good for you, and lucky students. Hahaha.”

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NP: “Right. I think it does benefit them too, because even them using the signs to tell me what they want cuts down on some of the chatter or chaos that could otherwise happen just by people talking. Talking is not bad at the right time, but I have noticed that it helps there be a little less chaos. Some of the students really have fun with it. I had one little girl last year who told me that she was trying to teach herself sign language so she could communicate better with me. And I just thought that was so sweet. There are some of them that really latch onto it and think that it’s cool. Others are kind of like, okay Miss, we’ll try. But I really wish I had learned it as a child. My parents gave me the option but I don’t think I realized at the time how valuable it would be.”

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LS: “Natalia, can you tell us a little bit about the advice that you have for other people who are going through what you went through, either for themselves or parents of children with hearing loss. What are some pieces of advice that you would give them along their journey? Though you have already some wise and helpful things, like self-advocacy, learning about your own hearing loss and understand it better and switching providers if you don’t like them. Those are all very, very wise pieces of wisdom. But is there anything else you would like to share with us?”

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NP: “I think sometimes when parents realize that their children have hearing loss, if it’s not a deaf family or someone where this is something we kind of were expecting, I think a lot times when it’s families who only have experience with hearing and there hasn’t been any hearing loss, sometimes it could be scary or seem like this huge thing. I know my parents went through that at first. But I would say just not to get discouraged or think that it’s this huge thing that’s going to define your child’s life. Because my experience has been that yes, it impacts communication, and yes it’s been part of my life, but it hasn’t made it any worse by any means. If anything, it has taught me different things that maybe I’ve had to learn or overcome but that has actually ended up benefiting me.

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So, for parents not to get discouraged or think that this is going to be a hardship for their family or their child. I really appreciate that my parents always just taught us, okay look directly at my face. Honestly, that benefits any child because that’s respectful. So, your child is just as likely to have like anyone else a happy, normal life that is full. Not to get discouraged and not think that it’s going to be a bad thing.”

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LS: “That’s beautiful. I was also so impressed and happy that you brought up that you can find resources online. Support groups and informational videos and the All About Audiology podcast. I’m so honored that you reached out to me because it’s really the whole point of my podcast, is doing this exact thing. Hearing from other people’s experience and gaining from each other’s wisdom and knowing that you’re not alone and you don’t have to know everything at first and there are people out there who are ready to help you.”

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NP: “Right.”

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LS: “I really appreciate you coming on the show. Natalia, if anyone wants to reach out to you or have any questions for you, where can they find you?”

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NP: “They can contact my email which is natalialauren49@gmail.com or find me on Facebook. Thank you for your time and letting me share my story.”

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LS: “Thank you so much for sharing. It’s really been a pleasure.”

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Additional Resources:

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https://hearinglosshelp.com/blog/the-bizarre-world-of-extreme-reverse-slope-hearing-loss/

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https://www.audiologyonline.com/articles/standard-versus-special-fitting-approaches-872?utm_source=hearingtracker.com

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https://www.hearingreview.com/practice-building/practice-management/changing-with-the-times-managing-low-frequency-hearing-loss?utm_source=hearingtracker.com

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And here is a Facebook group I’ve found helpful for everyone to share information, made up of people with hearing loss, Audiologists, & parents https://www.facebook.com/groups/Reverse.Slope/?ref=share

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The post All About Reverse-Slope Hearing Loss- Episode 49 with Natalia Popham appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. I’m an audiologist, speaker and parent coach. And on this podcast we talk about the personal, everyday experiences of people connected to audiology. We hear from parents who share their experience of their child having hearing loss. [We also hear] from professionals in various fields with expert advice and wisdom on the everyday challenges and opportunities that we have for communicating and connecting to our children, to our patients, and to our students.

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Way back in Episode 18 of the podcast, we had Chloe Tompkins as a guest and she talked about how she incorporates American Sign Language into her music classes in order to make the classes fun and accessible and inclusive for children of all hearing abilities and using different modalities.

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And today’s guest is Jacquelyn Briggs. So, Chloe introduced us. And I cannot wait for you to hear Jacquelyn’s inspiring words. She’s also a teacher, and she has a very personal experience with hearing loss to share. And I’m gonna let her tell it.

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So, just before I play that amazing interview for you, I want to remind you that you are the most important part of the All About Audiology community, the listeners. Thank you for sharing the show. And thank you for your comments, and your questions. Absolutely come and connect with me over on Instagram and on Facebook. And if you want to be a guest on the show, or nominate a guest on the show, feel free to reach out to me and we will continue to spread hope and self-efficacy and confidence in the world.

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So, welcome Jacquelyn, and thank you for listening.

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Dr. Lilach Saperstein: “Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. Music is just one of those amazing things that we all enjoy in our life that we have as part of our experience. And today I’d like to dive in to music and how we can use music when we’re educating deaf and hard of hearing children. And my special guest today is Jacquelyn Briggs, who is a music teacher and a teacher of the deaf at the Clark School for the Deaf in New York, and Jacquelyn is going to share her personal story with hearing loss as well. So, welcome to the show, Jacquelyn, how are you?”

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Jacquelyn Briggs: “Great. Thank you so much for having me. It’s great to be here.”

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LS: “I’m so excited for you to share your story and come on the show. And first of all, to give a quick background to how we’ve connected is that way back in Episode 18 of the podcast, we had a very wonderful guest Chloe Tompkins, and she also is doing music education and also shared her journey with hearing loss. And that’s how I connected with Jacquelyn. So, go and listen to Episode 18 to hear Chloe’s story, but I’m so excited to learn more about your journey. Where do you want to start?”

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JB: “There’s so many things we could start with. I mean, I met Chloe probably two years ago, I can’t remember now at a deaf music event. That’s how we met. We were involved in a performance together and she is just an absolutely wonderful person and introduced me to your podcast, so it’s very exciting.”

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LS: “Well, first of all, what’s going on with schooling? You know, like how has COVID impacted everything in your life? Like let’s just start there because that’s what your mind is on, the disaster that is 2020.”

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JB: “I don’t even have a word to describe it. I’m like sitting here thinking to say, it’s been an adventure. It’s definitely been an adventure to say the least for us. Schools closed March 16. And it’s been a little challenging because it was a Sunday evening and suddenly we all found ourselves having to figure out how to teach students with hearing loss through online platforms, which presented a lot of different difficulties. But you know, we did well, we managed, we all learned different tricks and started putting stuff together. We are doing our summer sessions still online.”

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LS: “What age students do you teach?”

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JB: “Preschool. My students come out of EI typically and they come into Clark and I have an integrated class and they are three and four years old.”

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LS: “That’s amazing. And what’s the approach, the communication approach at Clark?”

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JB: “It’s an auditory verbal [approach]. We take a lot of listening and spoken language strategies into the classroom.”

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LS: “Okay. And so, for those listeners who are not familiar with terms, would you just give us a little rundown of what that means?”

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JB: “We use listening and spoken language strategies to help children that have hearing loss, that use listening technologies, such as hearing aids or cochlear implants or BAHAs to learn to listen and speak. That is our goal. And we have at Clark, New York, they have early intervention programs and they have classrooms for preschool and the idea is, you know, they would go to kindergarten when they’re ready, when the time is right.”

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LS: “All students, it’s very important that they always have their devices on and everything is working because you’re primarily using auditory and spoken modalities as opposed to signing for everybody, the uninitiated of what the different approaches are. Besides for teaching your adorable preschoolers, you also incorporate tons of music.”

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JB: “I use music in everything that I do. I use music for routines, I use music for transitions, we use music when we are asking questions even. Because we’ve found that using music through songs and you know finger movements and gross motor, large movements, we help them learn to develop speech patterns. So, they start talking with different intonation, they start raising their voice at the end of a question like, ‘What are you doing?’ They’re picking up on natural speech patterns, and we incorporate it through music. So, we do a lot of call and response, we’ll do a lot of conversational turns. Recently, I found that a lot of my students want to sing on their own, which is really funny to have that happen through zoom instead of having that happen in person. And so, we give them opportunities. We have different routines on set, they’ll sing. And I’ll give the option and I’ll say, ‘Does anybody want to sing?’ And we have almost the whole class that will raise their hands. It’s really exciting.”

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LS: “How many kids do you have?”

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JB: “I had eight. I currently have five for my summer term.”

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LS: “So, that’s a nice group. They have enough interaction and also attention. That’s a beautiful ratio. Nice.

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A couple of episodes back, we had Michelle Riddle on the show who’s an occupational therapist, and she talked a lot about integrating movement of your body and rhythm, and hearing and how when you’re using more than one modality at once, it’s way better for following directions and supporting the development of all those different areas. So, that’s amazing that you use that with the kids. So, when you moved over to zoom, how do you manage that without everyone jumping out of their chairs?”

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JB: “Oh my goodness. Well, I started doing my own daily music class. Before when we were in the classroom, I just did music in everything that I did and I still did that when we were on zoom. But when the platform switched, it made it harder to make everything seamless. I couldn’t just, you know, do transitions with a song as easily as I had in the classroom. I still did them, but they served a different purpose. I started doing a music class through zoom every day, I do a music class with my students. And we do a lot of different songs. So, we do a lot of songs where we are up and moving and dancing around, I do a free dance. And for me, it’s a little bit more performance based. I can’t interact with them as I would have typically, you know, because then zooms microphone doesn’t react as well. And then you get everybody that’s talking over each other.

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So, for me, it’s a little bit more performance based, but I do ask them a lot of questions and I’ll forget the words of a song and ask them to sing it or I’ll sing the wrong words and I’ll ask them to correct it. And they do it almost always, they correct everything that I do wrong, which is really exciting for me. But I do a lot of large movement with them. And so, we’ll do like the Hokey Pokey, we’ll do songs that have large movement incorporated into them. So, there’s a goldfish song that we do, and we pretend that we’re goldfish and we’re swimming. And we do a free dance, so I’ll pick a different song daily and we just dance around on zoom together. So, we have like, a big dance party and it’s a lot of fun actually.”

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LS: “Dance party every day. Everyone needs to incorporate that into their daily routine at all ages. Yes.”

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JB: “It’s a lot of fun. I have to tell you, it’s one of the highlights of my day. It used to make me so nervous to do it on zoom, but then it just became like, I love it. I look forward to it every day.”

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LS: “Okay, so now, I’d love to hear a little bit about your background and how you got interested in that.”

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JB: “I grew up in a very musical family. Both of my parents are music teachers. When I was a little girl, the only thing I ever wanted to do was sing. And so, I was singing from a very young age. I sang all through elementary school, middle school and high school. When I was a junior in high school and was preparing to do my college auditions the following fall, I was in a car accident. I was in a car accident at the end of my junior year. I was a passenger in a car that was T-boned on the right hand side and the other car hit my seat and I lost my hearing. I lost the hearing in my right ear. Yeah, my life changed instantly. And at the time, to sort of put it in perspective, I was so badly injured, that the hearing loss was not a priority. It was minor compared to some of the other injuries that I had sustained.”

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LS: “So, you were in this accident, you guys T-boned directly into where you were sitting, the passenger seat on the right side of the car.”

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JB: “Yes.”

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LS: “Okay. In America, right? The side passenger seat. And so, what was the extent of your injuries if you don’t mind sharing that and what was that process like? You said instantaneous. Were you still conscious? Do you mind talking about that?”

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JB: “Absolutely not. So, I was knocked unconscious. I actually came to at some point after the accident and then blacked out again. I don’t have much recollection of what happened at the actual scene. But I know that the EMTs were having a hard time getting me out of the car because my feet, my legs were just stuck under the dashboard. They just had a hard time getting me out. We did not know the full extent of my injuries until they started running tests and after the tests started to come back, I had extensive injuries to the right side of my body. So, I had broken my right clavicle, I had six broken ribs. I had two punctured lungs. I had breaks in my pelvis and my tailbone, you name it. At the time they thought that I had a skull fracture. I found out almost a decade later that wasn’t exactly the case.

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Yeah, significant injuries. They weren’t really sure if I was going to walk, so I was scheduled to go in for this huge surgery where they were going to put a screw through my tailbone and I witnessed a miracle I think because the day before that surgery was scheduled, I was able to sort of sit up in a chair under some pain management. And my doctor said, ‘Well, if she can sit up, then we’re not going to do the surgery.’ So I definitely witnessed a miracle there because I’m walking again. I walked about six or seven weeks after my car accident. We weren’t sure when it originally happened if I would walk. So many crazy things. I witnessed many, many miracles, many, many miracles of healing. And so, my journey just continues.”

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LS: “I have chills running down my spine. That is, oh my gosh, an unbelievable experience. And you were in high school.”

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JB: “Yeah, I was 17.”

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LS: “Yeah. And at what point was the hearing you know, something that you noticed or addressed?”

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JB: “I have a memory of telling my doctor that I could not hear out of my right ear and I was in the emergency room. I don’t remember what was said. I know that I went for quite a few scans after that. They were running some CAT scans on my head.”

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LS: “It wasn’t the most important of stuff. Not the highest priority. But what I’m saying is was it within a couple of weeks that you had other testing or was it like way later after all the other things, and PT for more important things?”

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JB: “My timeline is a little off. I was still in the hospital when they started running scans because they were looking for a concussion and for injuries on my head, too. So, they were scanning, but it was sort of inconclusive at that point that hearing loss was diagnosed because they were kind of thinking it was going to come back. And then they had run an MRI and the doctor and the lab tech couldn’t agree. He wasn’t a lab tech. I shouldn’t say that. But the doctor and there’s somebody else involved, couldn’t agree on whether or not I had a skull fracture. And so, they sort of went back and forth on, ‘She does have a skull fracture. She doesn’t have a skull fracture.’ And so, initially, they diagnosed it as I had sustained a skull fracture behind my right ear essentially. And fluid in the cochlea drained and the hair cells went flat. That’s what they were saying.”

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LS: “The temporal bone that houses our cochlea. It was definitely sensorineural. Okay, what happened next?”

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JB: “What happened next is after I got home and I started walking again, I was in multiple kinds of therapies, physical therapy, occupational therapy, and I decided that I was going to try music therapy. I remember being in the hospital and my parents were really pushing for the ENT at the hospital to look at my ear and he was very passive about it. And they kept saying, ‘You don’t understand. She’s a singer. She’s a singer, please look at her ears.’ And basically the answer we got was well, ‘Do something else.’ And so, I decided after I got out of the hospital, it was my senior year. I went through my senior doing music therapy at Beth Israel Hospital in New York City. There’s a Louis Armstrong foundation for music therapy, I believe, and I had a music therapist there that I saw and worked with for that year, and she was phenomenal. And then I graduated high school, graduated late but I graduated high school and decided to go to my community college.

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I was like dabbling, I was like, I’m going to try and be a music major, but in the back of my head, I was thinking at some point I’m gonna have to switch majors because this isn’t gonna work. And two years later, I graduated as a music major and I had been accepted to a four year school for a Vocal Performance degree in New Jersey and I finished my degree there. And I had always sort of, through my own process of learning how to sing suddenly without one ear working, I was going through the process of figuring out what that meant for me. How do I sing now when I only have one typically hearing ear? How do I adjust to my new normal?

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So, I took voice lessons and I kept studying all through college and obviously graduated with my Vocal Performance Degree but I got really intrigued in the overlap that exists between music and deaf education. This was like super intriguing to me. And I started teaching early childhood music together classes. I had gone and gotten a certification for music together and started teaching these kids. They were like two and three years old and I absolutely loved it. It was one of my one of my favorite things, and I decided I was gonna start looking for graduate programs.”

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LS: “You just wanted the dance parties. That’s really what it is.”

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JB: “Yeah, I wanted the dance parties, you got it. So, I started looking at graduate programs and I applied to Teachers College Columbia University in New York. And when I was in there, like checking out the program for music education, I realized that I could do this interdisciplinary Masters in music and deaf ed. So, I was like, well, that’s really interesting. I’m really gonna look at this program. So, I applied to the music education program, I wrote in my statement of purpose, I want to do an interdisciplinary masters program. And so, I ended up doing that. I did two masters in three years.”

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LS: “Okay. And so, one in music therapy and one in Deaf Ed.”

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JB: “It’s a music ed degree. So, I have a music ed degree and then one in deaf education.”

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LS: “At this point, in relation to the fact that you lost your hearing in your right ear, was it something you had accepted? Were you still like, kind of unsure if it was gonna be permanent, like where were you in that stage?”

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JB: “What a loaded question. There was a part of me that was significantly in denial for a very, for a few years, I would say. Because it’s hard, you know, you live your life one way and suddenly it is so different and there was absolutely nothing I could do about it. And I hadn’t done anything for that change (to happen) to begin with. I was just sitting in the wrong place, at the wrong time. It was very hard to come to terms with that, but at the same time, I learned that I was going to be okay anyway. I was still learning how to sing. I was learning to use my body as an ear. I was learning to feel vibrations and feel things differently. And I was still learning to sort of make up for what I viewed as this deficit. I know much better now. But at the time when I was navigating this, to me it seemed like something that was going to hold me back and I learned much differently because of everything that I’ve managed to accomplish anyway.”

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LS: “Did you ever have audiologists or other people offering all sorts of devices like CROS hearing aid or mini mics? At what point were people trying to offer you treatments or were you looking for that? Didn’t you have that happen?”

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JB: “That was offered to me at the beginning when I was still in the hospital. I was in a rehabilitation hospital you know, working on my physical needs at that time and there was an audiologist that was offering me a BAHA. We chose at that time not to do it just because there was so much else going on that we weren’t sure at that particular moment that the BAHA was the right fit. I wasn’t offered a CROS hearing aid until much later. But once I left the hospital, with my hearing loss, I just was like okay, this is it. And I was the one that never sought out another audiologist to see what my other options would be.”

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LS: “Can you tell us a little bit about the experience, especially from someone who grew up hearing in both ears, typically hearing and then had this very dramatic change to having only one sided hearing? Because many of the parents who are listening to this, you know, talk about how a child who is born with one typical ear, unilateral hearing loss or asymmetrical hearing loss, and I think you are in an exact position to try to describe what that was like, especially knowing that it was different before.”

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JB: “I think I had a lot of misconceptions about myself because things I heard were things like you have one good ear, you’ll be fine. And I know a lot differently now. But it was really hard to navigate because, especially when I was in college, I was failing things. I was failing classes because, you know, I didn’t have the access to the information that I needed. I didn’t have captions. I didn’t have anything that was helping me and this hearing loss was so new at the time. And so, I can remember studying for exams, and not having a clue when we talked about information that was on the exam, like I just missed it entirely. And also, if you go back and look at my notes from that time, I have like the first half of one thought paired with the second half of a completely different thought. And I really did try. There were moments where I felt like there has to be something wrong with me, like, I’m not smart, I’m not intelligent. I can’t take tests well. I always blamed myself, like there was something wrong with me in the way that I think.

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Even with that in mind, I was able to graduate with a 3.7 GPA. So, I worked really, really hard for it though. And then when I went to grad school, I was accepted at teacher’s college and I did the two masters in three years. And it wasn’t until I started my Deaf Ed masters that I started to learn, this was two years ago, that I started to learn about myself and I started to learn that there’s nothing wrong with me. I just didn’t have access to the information. I didn’t have the kinds of things that I needed so that I can be successful. And once I had a captionist with me in class, it TOTALLY changed my world around. Suddenly, I was able to participate in conversations when before, I was like, ‘I don’t know what’s going on. I don’t want to talk because I’m afraid I’m gonna say something that’s irrelevant to the conversation.’ “

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LS: “Tell us what you said, what you finally had access to.”

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JB: “Oh, I had a captionist.”

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LS: “Okay, yeah. Okay, so now you’re really following what’s happening. There’s been a shift in the whole conversation around unilateral hearing loss, whereas before it was exactly that misconception that one ear is good enough, you know. At least you have one.”

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JB: “Right.”

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LS: “As an aside, any sentence that starts with “at least” is not going to end well. Stop minimizing people and don’t bring up things that are not relevant. Just as a, you know, in general in the grief process, if people are sad or grieving something important, whether or not it’s a death or something they’ve lost that’s not a person but other grief in lots of different ways. Don’t say at least. Anyway, validation is more important.

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But back to the unilateral hearing, it’s only been I think, in probably the last seven to ten years, there has been so much research that says, ‘No, no. Children with one ear do really, really great when we help their other ear hear in other ways. What you’re missing is that sound processing, background noise reduction, all these things that our brain does with the sounds when we have two ears.’ It’s kind of like if you have two microphones in a system, like in your phone. You actually have two microphones there and the software and hardware is doing a lot of things so that it will background noise filter stuff that’s coming from behind the phone. So, you hear like things from how it’s catchy, like when you go from speaker to not speaker, whatever, like through the phone and to the speaker. Like there’s a lot of different things even just in your cell phone of like all this microphone technology.

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Anyway, that’s an analogy to what our brains do when we have input from two sides, a lot of processing happens with that crossover of those pathways for things that were redundant, there’s a difference in time. Like if someone’s on your left, the sound reaches your left ear faster than it reaches your right ear. And that time delay, even though it’s micro milliseconds, or I don’t know the exact word, what the actual difference is, is that time difference is super critical information. It also is louder to the ear that is closer. So, there’s a level difference. We have all these different things, inter-oral time difference, inter-oral level difference, that’s some technical language for you. But anyway, it is amazing to see how hard you had to work to compensate, how exhausting that must have been. And on top of all that, you you know, had internalized that as being your own ineptitude, whatever, internalizing that as being your fault, or that you weren’t trying hard enough. I’m so sorry that happened, but I’m also so happy that you can now talk about it. And then you got help. What happened next?”

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JB: “While I was working on my Deaf Ed masters, I started with some summer courses in the summer of 2018. So, I graduated with my first masters and three days later, essentially, like officially started my second even though I had done one or two classes prior to that. And I was in this class about auditory verbal therapy and language rehabilitation, and I loved my professor. She was so passionate about her work and and everything that she did. And so, she started talking about like cochlear implants. And I mean, these are all things that I knew, but for some reason, I didn’t really understand how they applied to me.

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And so, she and I were talking about cochlear implants one day and she said, ‘Well, you know, you have a sensorineural hearing loss, you can benefit from a cochlear implant. That’s something you should have a look at.’ And I was really like, hands off about it. I was like, ‘No, I don’t think so.’ But what I wanted was to be able to have a captionist in school, like to have somebody that came to my classes with me, but I hadn’t had an audiogram in close to ten years, so I needed an updated audiogram. So, I contacted somebody at Columbia medical, and I went in for my first audiogram. And in a long time, nothing had changed. That right ear still had, it’s a profound loss. I think it was, I was up over 120 decibels and didn’t respond to anything in that ear. So, it’s a profound loss, very profound.

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And I started thinking about the possibilities of like, maybe I can get a CROS hearing aid. And so, I was struggling with some vertigo at the time, some very weird vertigo that was leaving me unable to work for multiple days at a time. And so, I went from the audiologist and I made an appointment with one of the otolaryngologist at Columbia and I waited two months to see him. And so, when we went in, and we were talking to him about a few different options like the CROS hearing aid, and so we were talking about what the vertigo was. So, he scheduled me for some scans on my head to show what my possibilities were for either a BAHA or maybe a cochlear implant or just what the possibilities would be for any kind of hearing device that I could have.

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So, I went in for that on Halloween of this past year, was Halloween 2018. And we went in for these scans fully expecting to hear that the auditory nerve had been severed, that I had a skull fracture there that I wasn’t going to be a candidate for any of these things, because that’s what we had been told. So, I go through all of these scans and go into the doctor’s office and my father had come with me that day. And so, we’re sitting there and the doctor says, ‘Okay, your scans are completely clear.’ And my father goes, ‘Oh, so you mean the skull fracture healed?’ And the doctor says, ‘No, you never had one.’ So, we were like, stunned, we’re sitting there thinking, like, what does this mean? I don’t understand. And so, I mean, obviously, I took a shot to the head in the car accident, you know, but there was no skull fracture, like the inner ear was totally intact.

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And so, I went from having no options to suddenly having multiple options. I could get a BAHA, I could get a cochlear implant, you know. The cochlear implant was, we weren’t sure because it’s not totally common to see somebody with a unilateral hearing loss with one implant. At least in my experience, I haven’t seen that many people with a unilateral hearing loss end up with a cochlear implant. In my case, they fought for the cochlear implant because of the tinnitus that I had in my right ear, because the cochlear implants tend to stop the tinnitus. And so, that was on October 2018. On December 22, I was implanted and then activated January 18th. So I’ve been active for about a year and a half. Yeah, it’s been one of the craziest experiences, I think, to be typically hearing in both ears, then to suffer a hearing loss in one ear and to then have a cochlear implant. I don’t have words. Haha.”

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LS: “Yeah, that’s definitely a unique journey for sure. It’s not something that people hear a lot about, the hearing loss that is acquired, you know, as opposed to from birth, when there are traumatic injuries. Did you have, did you end up having any concussion or brain related injuries?”

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JB: “Well, I did. I had, I suffered from a traumatic brain injury. Actually the vertigo that I was struggling from were diagnosed as migraines from that car accident, from the TBI that I suffered. I would not have said that because I never thought about it. So, I take care of those differently now. But I even went back and read the original reports from the first couple of scans that they did on my head and they list a skull fracture and and where it was, so I really don’t know what happened. I mean, I know when we did the current scans before my surgery, like before I found out that I could go for a cochlear implant. And then when we went for the surgery, we even asked the doctor, ‘Could you see what happened? Did you see anything?’ And all he could say was, ‘Well, she obviously took a shot to the head, really hard to tell.’ “

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LS: “Definitely strange. What was it like when you were activated? I know that’s a question a lot of parents have when they have a young child and they go through this whole journey with them and their kid can’t really tell them what it’s like.”

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JB: “It was really emotional for me. I have a video of when it was first turned on and my audiologist played like little pulses in the ear. You know, we were sort of mapping it out. And she told me to raise my hand when I could hear the pulses. And I was so hesitant to raise my hand because I was terrified that I was actually hearing something in my left ear that was crossing over. So, I like raised my hand. She was like, ‘You’re right. That’s the first time you’ve heard anything on that side in a long time.’ I was like, ‘Yeah, it’s been ten years.’ So, it’s emotional.

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And then when we went live, and the implant went live, my dad started talking to me, and I started to cry because it was a realization that, you know, for ten years, I believed something, I believed something one way and then it was completely different. In fact, the audiologist was saying to me that they weren’t sure if the auditory nerve would respond because it had been so long since any sound had hit that cochlea. So, when they tested it during my surgery, they were saying we weren’t really sure what to expect. And the amount of response that they got from the auditory nerve in the surgery, everybody was shocked.

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And so, when it went live, when the implant went live, I was sitting in the audiologist office and I started to cry because of the realization that, you know, you just never know. Everything about my life changed once and then it changed all over again. You know, right when I started feeling confident in who I was and the things that made me who I was or who I am, you know, it changed again. When I first started hearing people talk, it sounded a little bit like Gollum from the Lord of the Rings. That’s the best way I can think to describe it. It was like kind of whispery, kind of raspy.

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The first few days I had it, it actually made me a little nauseous because suddenly I was getting so much input on that side. I adjusted to it now. I practice a lot, so I’ll stream podcasts to my implant to practice. I can answer the phone with my cochlear implant. So, a lot of times I’ll tell people, ‘Just be patient. I’m practicing. I’m talking into my implant. I’m working my right ear.’ It’s been challenging, but it’s been absolutely worth it, especially with the kids that I work with. And they’re so brave, all of them are so brave. And they remind me every day how brave I can be just by watching them. And they teach me every day about different things, you know, different things that they hear, different things that they think. And it just reminds me that there’s never a point where we stop learning, there’s never a point where we’ve just arrived and things are over and we have nothing else to do. We’re always learning. There’s always more to do. And so, this is just another step forward.”

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LS: “That is incredible. I did also just want to add a disclaimer, you know, that every single person in every case is going to be so unique. Like you said about your auditory nerve, that that was intact and that you were so successful just right in the beginning. You were able to hear the sounds. But not all activations go that way. Everyone has a different anatomy and everyone has different sets of circumstances that make them more or less a candidate for “success” with the Cochlear implant.

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But what an incredible journey, and I love also hearing your attitude and knowing that you really do see every step as part of a journey. Because, you know, when it’s over, then that means there’s no more life left. So, it’s a good thing to be on a journey of life. And the kids you work with, you know, you have a very special connection to their experience in a way that’s really moving. I can’t imagine, you know, what it is to be a kid and look at your teacher who has the same device or, you know, same experience of certain things as you. That’s really moving.”

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JB: “We talk about it all the time. I have some students that, you know, they use BAHAs, and so, you know, we talk to them about how it’s our superpower. You know, some people wear glasses, some people have different colored hair, some people have whatever it is that makes them who they are. This is ours and it’s our superpower. I love that I can connect with them in that way. And it also has helped me in talking to parents too, because they do have a lot of questions. And there’s a lot of people that will say, you know, what did you hear? How did it go when this was turned on? How do you hear with it now?

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Because it never occurred to me, even with professionals in the field, right, it never occurred to me that some of the professionals that I work with, have never heard through a cochlear implant before. Like they wouldn’t necessarily understand what that means, because they don’t have a cochlear implant. So, I remember talking to a few people that I had interned with and they were like, what does it sound like? And it kind of just made me laugh because those are things I never thought about. And so, it’s helped me be able to talk to people about different aspects of this field, of this wonderful, crazy field that we’re in because people have questions, they want to be able to connect, these people need different kinds of supports.”

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LS: “Exactly, and that’s why I’m so grateful that you came on the show to share your story and share so much hope or what’s possible. And at the same time, I’m wondering what your thoughts are, you know, on students who might not be candidates for auditory oral, auditory verbal approach. And you know, because there’s this big question about do we introduce sign language when we’re really trying to promote auditory verbal usage of devices and you know, to try to make the brain a hearing brain? What are some of your thoughts on that when parents are in that decision, because they don’t know how it’s gonna go when they have a tiny kiddo and they have to make certain decisions?”

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JB: “I’m always a huge proponent for sign language. I love it. I think it’s wonderful. I think it’s beautiful. I think for young children, the biggest, sort of the biggest milestone, needs to be in my opinion, giving them access to language, right. So, I think if you incorporate signing, it’s never going to take away from learning, to listen and speak, is only gonna add to it. And so, if you have somebody who was taking a little bit more time or is unsure about how their child will do as they are learning to listen and speak, I think that sign language would be a major help and if your goal is to listen and speak, then that’s your goal. Like that’s an amazing goal. And your goal can also be to learn to sign as well. It’s just as wonderful and just as amazing.

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We just want to give kids the ability to communicate and have language to have access to language. And so, I, my pedestal is through any means necessary. So, if that means that that child is signing and talking, whatever they need so that they can be able to communicate and what other forms that they can, is my goal.”

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LS: “That’s exactly it. I’m glad you mentioned that. Language is the goal rather than speech. Language has different modalities. Yes, it’s really, really amazing how much the technology has advanced and what people are able to achieve. My question to you now is, do you sing?”

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JB: “I do. I still sing all the time. About, oh my goodness I don’t even remember, maybe two or three years ago I was able to perform in an opera program in Italy. So, I was able to go there and I studied for three weeks and I performed at the end of three weeks. I still perform for these deaf music events. So, we just did one on zoom in April and I haven’t sung as much because of all the quarantines and the pandemics and everything but I still actively sing. And I love it. I love to perform and it’s just another piece of the puzzle.”

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LS: “Yeah. Do you find that when you sing you necessarily have your implant on? Do you have your implant on basically all waking hours? What’s your usage like?”

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JB: “Yeah, I wear my implant all waking hours. I go back and forth when I sing because I’m still trying to figure out what that’s like. And I’m still sort of trying to adjust it, is what I should say. I don’t get any pitch information from my implant. I can’t really pick up a pitch but I’m starting to be able to do that. But they are guesses at best, I’m not positive. I don’t hear something, I think okay, I know for certain that if I sing this note, it’s going to match what I actually heard. But I get the pitch information from my left ear, but when I sing, I feel so much more. You know, when you’re singing, your body vibrates. And because you have the resonance that happens even when you talk, right, because your vocal cords vibrate, and I feel that so much differently. And so, it’s helped me navigate different parts of my voice, like the higher parts versus the lower parts of my voice and that’s really exciting.

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And so, when I’m singing, I play around with whether or not I’m wearing it. For the most part I do because I want to be able, like I want my students to see me go out on stage or wherever, but to see me go sing with this implant on. I don’t want them to feel like, ‘Oh well, Miss Jacquelyn didn’t wear hers. I don’t have to wear mine.” I want them to be proud of that part of themselves and to sing or create music in any way with this wonderful thing that makes them who they are, this unique part of themselves. So, I’m trying to figure out what that means for myself still. I wear my implant all the time. Like I said, I stream to it. I answer my phone with it. I play different apps with it, play podcasts, I do some of the music apps from cochlear. So, yeah, I wear it all the time.”

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LS: “That was awesome. All right. So, we have in the All About Audiology community, we have parents of children with hearing loss, people who are studying audiology and lots of related professionals also who listen to the show. And if you can give some advice to our listeners, you can address any of those groups or all of them, what would be some of your wisdom to share it with everyone?”

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JB: “Well, the one thing that I always tell myself is to just keep going. You know, the one thing that I always look for, is regardless of what’s happening, is to continue moving forward, whatever that means for you. If that means going to class one day, then you’re moving forward and going to class one day. If that means that you’re just getting through a day, you know, just keep moving.

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The second thing that I always tell myself is not to be afraid to fail. I’ve got plenty of failure stories and plenty of fell on my backside stories where it really took me a while to get myself back up. But at the end of the day, for me, it was all about making sure that I could get back up and I could keep going. And I think a lot of my story, a lot of the journey that I’ve been on has happened because I had something that totally knocked me off my feet and I found a way to stand up and keep going.

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It’s not easy. I don’t want you to think that I was like, ‘Okay, I’m ready to go. Like, moving on. These were things that took years of my life. You know, you’re talking about my hearing loss journey, it was eleven years that I lost my hearing this past May. Eleven years and my implant I’ve only had for a year and a half. So, these journeys and adventures that we’re on in life, you know, these things take time. But I would always say, if what you’re doing makes you happy, do what you do because you love to, for no other reason. And you always find a way to keep moving forward.”

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LS: “Yes, just keep swimming. Hahaha.”

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JB: “Yeah, like your songs.”

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LS: “Oh my goodness, thank you so much for sharing your story. And if listeners want to reach out to you, where can they find you?”

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JB: “You can find me on Facebook, Jacquelyn Briggs. It’s a little bit of a different spelling, so you can find me on Facebook and my email if anybody wants to reach out through email too. So, I can say that if that’s helpful.”

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LS: “We can put that in the show notes. I am so, so grateful. Thank you again.”

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And thank you to all the listeners of the All About Audiology podcast. I can’t wait to hear your comments or thoughts about our conversation today. And you can send me a DM on Instagram or through Facebook at All About Audiology podcast.

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I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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The post All About Unilateral Hearing Loss-Episode 48 with Jacquelyn Briggs- All About You appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host Dr. Lilach Saperstein and on this show, we discuss audiology and how it relates to your life. Whether you’re a parent, a student or a professional, you’ll find discussions and conversations here about how audiology affects your life, and practical everyday tips for improving the care that you give your patients, the way you can advocate for yourself or your child and advice for students and young professionals.

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Today’s guest is Dr. Saunja Burt, an audiologist from Florida who has more than 20 years experience, including 17 years as an Audiology Program Manager. Dr. Burt received her BA in communication science and disorders from Hampton University, her MBA from Nova Southeastern University and her Doctor of Audiology degree from Central Michigan University in 2001, where she became the first black student to complete a four year residential AUD program.

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Just before we dive into that interview, I’d like to remind you that your comments and your messages are the most exciting part of this show and for all of us to have a conversation around these topics. So, come and join the All About Audiology Facebook group, follow me on Instagram and Facebook. And of course, all of your messages are so dear to me and I answer all my DMs and I can’t wait to hear what you think of our conversation.

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So, welcome Dr. Burt to the show.

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Dr. Lilach Saperstein: “Welcome to the show.”

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Dr. Saunja Burt: ‘Well, thank you. Thank you. I appreciate you inviting me. So, just to tell you a little bit about myself. I’m a Midwestern girl. I’m from Ohio, Youngstown, Ohio to be exact, born and raised. I have three sisters. I’m number two. And people always ask why did you become an audiologist? And the reason why is actually my younger sister had ear infections. She had to have pe tubes (pressure equalizing tubes). She had speech and language therapy, so much so that one time I went to one of the appointments with my parents, and she happened to have to have a hearing test that day. We go into, I say the basement because it was the lower level. And I see this lady and she’s explaining everything to my mom, what they’re going to do, the hearing test. So, while she’s talking to my mom, I’m also asking questions, like, ‘Who is this lady? What does she do?’ And my mom was a nurse.”

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LS: “Do you know how old you were?”

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Dr. B: “I was in middle school, but I remember my mom saying, ‘Oh, this is an audiologist and she does this’. And the audiologist at the time heard this conversation. She stopped and said, ‘Hey, if it’s okay with your parents, you can come test your sister’s hearing with me.’ And of course my parents are like, ‘Yes, go’ you know. They are all about that support. I like to say I did my first hearing test when I was in middle school.”

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LS: “What a great experience. That’s so nice.”

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DR. B: “Yes. And it was really nice of the audiologist. And you know, at the time, I knew then, I was like, ‘Oh, this is great.’ I ended up attending Hampton University in Hampton, Virginia. They actually have one of the first communication science disorder programs at a historically black university. And I say that to say, I didn’t realize that they had this in undergrad. I went in thinking I was going to be an education major, with the occupational therapy, physical therapy. And then I went back, I was like, Oh, let me take this communicative science disorder class. That was my second semester.”

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LS: “We hear from a lot of students and it’s a very common experience that people will say it’s because of my sister, or my parents or I had a kid in my school… But, you know, there’s always some kind of personal connection with learning about audiology as a field, as opposed to just like everybody knows what a dentist is. Everyone needs dentistry. It’s almost like, where is the gap with that, like education or even awareness that audiology is a field. That’s been a journey of evolution in our fields.”

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DR. B: “Absolutely. Because I know since I could remember, I know I wanted to do something in healthcare, but I thought, my mom was a nurse, so I thought, Okay, well, maybe I want to be a doctor. So, I actually went to medical camp, and I believe I was in high school. And I realized I was like, Oh, no, this isn’t for me. So, I knew it was something maybe in the allied health care system field that would probably suit my personality a little bit more.”

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LS: “Sure. I mean, I was all about medicine also in high school, and then we had the fetal pig dissection.”

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Dr. B: “You said that was it? Hahaha.”

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LS: “And I was like, um, this is enough. I don’t think this is a good idea. Hahaha. And even though I love being in surgery when I was working at the hospital, I got to be in the surgeries and doing a lot of the inter-operative monitoring and checking cochlear implants. And I, I like the drama. Haha.”

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Dr. B: “Exactly. Oh, no, I’m telling you, absolutely. I had a great fourth year externship at University of Michigan. And part of that was the inter-operative monitoring portion of Audiology. And I was like, oh, this is cool. I don’t know if I could have been the one operating but it was great to be the one monitoring.”

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LS: “Nope. Way too much responsibility. But I mean, when I’m in the OR (operating room), it’s like a play, and everyone has their role. And you’ve got the scrub nurse. And you’ve got all the other people who are like in charge of devices and one guy who’s like, his whole job is to make sure that electricity just always stay stable for all the different drills and lights and things. And yeah, I just like being kind of a fly on the wall and then stepping in when it’s necessary, and then stepping right out.”

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Dr. B: “I like that description. It’s absolutely true. Everyone has their role.”

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LS: “And then you have the surgeon and then the resident and sometimes you have students watching, and I love it when the med students come over and ask, ‘What’s going on?’ And I’m like, ‘Well listen here med students…’ “

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Both laughing.

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Dr. B: “Right. Definitely!”

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LS: “So, that’s how you came into audiology. And what was your schooling like? What was the experience like while you were an undergrad and then graduate school?”

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Dr. B: “Undergrad, like I said, I went to Hampton University. And Dr. Robert Screen was the program chair at that time. Be brought the program to Hampton University. One of the reasons was that he felt that this was needed to educate black students and students from diverse backgrounds. This was needed in our profession. But I had very supportive instructors there. And the reason why I found out about the AUD actually is because of the audiology instructor at the time, Teresa Graham. I think we had a class of maybe 15 to 20 students and I probably was one of the only ones or the only one who was going to audiology. I knew early on, like, ya know, I’m definitely an audiologist. That’s what I want to do.”

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LS: “And not a speech pathologist.”

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Dr. B: “Which is great. They supported that. I remember, as I was applying to go to graduate school, she was the one who told me, ‘Hey, the profession is changing. It’s just a great call to AUD, Audiology doctoral degree. There’s only a few schools that have it right now. But I think you should look into it.’ And she even, you know, gave me some articles. So, I looked into it. At the time it was only three schools, it was either two or three schools. I know one school stopped accepting students because they no longer continue their AUD program. And essentially, it came down to Central Michigan, it was like my only choice really, because the other school I think was brand new, and I don’t know if they were accepting students that year. It might have been the following year.”

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LS: “So, for our listeners who are not familiar with this history. Basically, we had first the master’s level and a lot of audiologists were practicing that way. And then they introduced the doctoral program. And there was kind of like a period of time where it overlapped. I mean, you know, this, you lived through it. I just know the story. A lot of people were kind of grandfathered in, if you use that expression, where they could continue to practice if they had the Masters, but any new students needed to complete the doctorate. But then you were in that middle ground.”

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Dr. B: “I was in that middle. And honestly, it was kind of controversial because everyone wasn’t on board, to be honest. And we didn’t realize that, my classmates and I, when we went to our first conference and realized the discussion going back and forth. So, anyway, I applied to Central Michigan, and was accepted. And I did all this back then. No, we didn’t have zoom or if we did have it, we didn’t do Skype. So, everything was like over the phone, phone interviews. And I was accepted. I didn’t visit the college. I didn’t do any of that. I had made up my mind already that if I got accepted, I would go. So, I’m thinking it was in Michigan, and I’m from Ohio, but I mean, honestly, I’d never been as far as Mount Pleasant.”

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LS: “So, what’s the distance, like the drive from Ohio to Michigan?”

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Dr. B: “It was about, I should know this, about eight hours, I believe.”

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LS: “Oh, wow. Okay, so that’s not like, I’ll just pop by on the weekend.”

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Dr. B: “No! Right. It was definitely, definitely longer than a couple of hours. So, that was good. When I went to Central Michigan, it was definitely an adjustment going to Central Michigan from Hampton University.”

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LS: “So, you were coming from Virginia, from a predominantly black university.”

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Dr. B: “It was. Central Michigan was kind of, I don’t wanna say the middle of nowhere, but you know, Hampton, was full, like a military base, kind of a city. You know, we were close to DC, Norfolk, Virginia Beach. And then I go to Mount Pleasant and I remember driving up there, we were like passing, Lansing and all these major cities and we are going through like farmland. And my parents looked at me and were like, ‘Are you sure you want to do this?’ I was like, ‘Yeah, no, I’m doing it. Hey, I’m gonna do it. You know, I committed to it.’

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And I can tell you my breakdown was not school. It was Linda Seestedt-Stanford who was the clinic director at the time. And I remember I was, this is the first semester there at Central Michigan, and I happen to pass by her office and she said, ‘How are you?’ And I just was crying. She was like, ‘What is wrong? Like you just got here? What happened?’ And I had just spent money, trying to redo my apartment, at target and Walmart and I just spent all this money and I couldn’t find any hair care products. You know what? She sat me down. She listened. And I felt better after I talked to her. I was like, okay, because I’m an out of state student. I didn’t know where to get my hair done. That’s like a big thing, you know, for anyone. She called me at home that night. She had called the stores and told them that I couldn’t possibly be the only student who was having this issue. And she called and she said, ‘Saunja, let me know, what do you need and they’re going to order it for you.’ I was like, ‘Okay, I have made the right decision here’ because it wasn’t a clinical thing. But she took it personal that she called around and took action. So, that’s what she did.”

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LS: “Wow, that’s pretty impressive but what impresses me from the story is that you were able to be open about what you were going through.”

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Dr. B: “Exactly.”

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LS: “I can imagine other people might feel ashamed or just say that this is a concern that I’m feeling uncomfortable sharing. But you were open so then you were met wonderfully by a good person. That took a lot of bravery and I think students need to hear that, you know.”

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Dr. B: “Yes.”

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LS: “Your professors don’t only care about the the work they, they want you to be okay and for you to get through it.”

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Dr. B: “I had some mentorship at Central Michigan, Linda Stanford introduced me to one of our professors, Dr. Dawn Nelson. She was on maternity leave. And she called her and told her about my situation and me just adjusting to being at Central Michigan and needed some help. And so Dr. Nelson had me call her immediately. And I did and that was a great relationship in terms of her being a mentor to me through the program. She also served as a chair on my capstone project, and really helped me when I first started practicing audiology. You know, sometimes you have questions about what you learned in class because she taught us electrophysiology, vestibular, and auditory processing. So, if I had some questions, She was very helpful to have someone to go back to and get that information. So having a mentor is really beneficial.”

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LS: “Yeah, it’s so important to have a mentor, and to have those connections with professors. Exactly. Like all on a team and it doesn’t end when you graduate. I always kind of, just on a personal note as well, had to learn that difference in graduate school versus being in undergrad. In undergrad, you’re one of 60, 80, or 300 in your program, whatever. And then in grad school, you become one of ten or one of twenty. You know, much smaller ratio, and everybody who is invested in you completing that program.”

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Dr. B: “That’s important.”

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LS: “You’re all on one team together. It’s not you versus professors or administration in a way that it might feel like that in undergrad, and then in graduate school, your partners, they want you to succeed. So, go to them with your issues and then try and work things out.”

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Dr. B: “I have to say, honestly, I was fortunate that I got that in undergrad as well.”

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LS: “Oh, that’s wonderful.”

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Dr. B: “We used to joke that our little department was small, but we were mighty. And I find that in audiology, period. I’ve always been in a smaller group, like audiology CDL. Communication Disorders is small, but we were a close knit group. Our professors really, really cared. And then go on to Central Michigan, we were a class of I think ten, a small group, but we had that support. And I feel like even in audiology, we’re such a small group but we are so mighty and what we do is great. We help so many people. So, we are a small but mighty force as well.”

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LS: “I love that. I feel that with the All About Audiology community, I feel that as well, you know. I don’t have hundreds of thousands of listeners, but I recognize a lot of people who comment. We’re the same people. I DM back and forth with students from around the world. And I feel that in the podcast. I’m glad that you felt that already so early in your career.”

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Dr. B: “Yeah.”

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LS: “So, what do you think were some of the highlights, top moments from your education? And then some of the challenges or barrier-challenges that you’ve overcome?”

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Dr. B: “You know, I love to be around people. I realize now. It gives me energy. In terms of Audiology and graduate school, most of my classmates we are still really a tight knit group of different backgrounds. When I say different, you know, I mean some people grew up in the city, some people grew up in small little towns, just in general. But we are a small group, I would say that was my highlight. We always tried to have each other’s back. Even now I’ll send them, we have a little group, and we’ll say, ‘Hey, I have a difficult patient, what do you think?’ Or even like, it seems like we all had children, the ones that do have children are around the same age. So, it even spreads like parenting. And that was the highlight just being with people. I have that network, that extended network, but also I have some great externships. So, I even did one in Vancouver, British Columbia, that by far was probably the best one, just to be in another country and experience which is great.”

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LS: “What was the setting? Was it a hospital, a private practice?”

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Dr. B: “So, it was a private practice. So, I got that private practice experience. And the staff was really great. Yeah, so that was really a highlight. And I even got to travel through the Canadian Rockies. So, I just took advantage of being a student and taking in all the experiences, you know. And that would be like my suggestion to students. Take advantage of everything. I was even able to do a mission trip to the Dominican Republic. Let me tell you, I miss those carefree days. Take advantage of everything. So, students, I’m telling you, if you have those opportunities, take advantage of it.”

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LS: “Yes. Student Life.”

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Dr. B: “Right?!”

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LS: “Sometimes I think about, you know, the days that I looked at my afternoon, from one to six, even. And it’s like, I have all this time. When’s the last time I had five hours that were just open, no responsibilities, nothing to go to?!”

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Dr. B: “Exactly. When was the last time? I’m thinking but I can’t think of it.”

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LS: “And not to minimize that grad school is very challenging. You have papers, you have assignments and clinic days that can be very long. But it goes in peaks and valleys. You have like sessions of this semester, which are difficult. And then you have those clinic days that are hard, but it’s not always the same. You even have a month off in January.”

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Dr. B: “Did we have off? Yeah, actually we did. I worked in graduate school.”

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LS: “Oh, what did you do?”

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Dr. B: “I worked in minority student services, and was helping out with the mentoring program. So, mentoring and it wasn’t just audiology students, but undergrad students. When they came through, we kind of paired them with someone who’s like in their third or fourth year of school, even a fifth year to help them get through the process because you know, the first year is difficult of college, period. Undergrad and graduate school. If you can get through the first year, then you got it made. So, I was able to work in an environment with students. For me it helped because I was able to enjoy a lot of events on a college campus. So, not just audiology, but also do things in the university setting, which was great and helped with the transition from, you know, undergrad to grad school and being okay. And you know, having another support system.”

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LS: “That’s great. So, you had a great cohort. And you you figured out how to navigate friends and events on campus. You had this excellent internship. Those are good things to put in your bank of good experiences. But I’m also sure there were some challenges.”

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Dr. B: “Oh, yeah, absolutely. Yeah, absolutely. Unfortunately, most of the things you just remember. I have one, like a patient. I have many, but I remember our first year, typically you were paired with another first year student, and we had a patient who just kept calling me “girl, girl” and my classmate was like, ‘Where’s the lady? Where’s the lady?’ And so, finally the patient was like, I don’t want that girl touching me again. I don’t want to see her. And it’s funny because, you know, we had a clinical supervisor and she had just left and went to help two other students. It was just across the hall. So, I just told my classmate, ‘Just go ahead. I’ll sit back here. Just finish the appointment.’ And I just remember my supervisor just apologizing for this guy. Because at the time you just get them, test them, get them done and out. I just remember like, ‘Oh, here we go.’ I had to prepare myself to get ready for clinic, we had a test exam that evening. So, just trying to clear my mind and get through that. I have many throughout my career, I would say those are most of the experiences, unfortunately, that dealt with that.”

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LS: “That’s very demeaning.”

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Dr. B: “Very!”

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LS: “When you’re in a position to help this person and they would treat you that way.”

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Dr. B: “Right. Exactly.”

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LS: “And I think it’s very important for us to talk about this for students and professionals and families, you know, all the listeners of the show to start to say, you know, sometimes we look at the issues of racism as these big conglomerate issues that are just like, way too big to look at and it’s like, does it have to do with me, with my profession, with my clinic, with my class, my family? It’s like over there and more and more people are starting to really see that it goes deep everywhere. It has roots in every circumstance and that’s why I think it’s important to have these conversations and for all of us to learn what those experiences are that we’re missing.”

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Dr.B: “Yeah, absolutely. And actually, part of graduating from Central Michigan, is we had to do a capstone experience. So, research, and I did mine on multicultural recruitment practices just based off some of the experiences I had. And like I said…”

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LS: “I’m sorry, one more time. Multicultural…”

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Dr.B: “Multicultural recruitment practices in audiology, and it was really based off of just a need of having more blacks and other people of color go through the program. So, people who don’t know the history will think that someone being called a girl is not offensive. But black people, black men were called boys, girls, women, even grown women like 80 years old, were called “girl.” That’s very offensive. Whereas someone else who’s younger, they always got given the respect of saying she’s a lady. She’s a woman. So, imagine somebody you know said that right now, they’ll call you a lady and like, oh, that girl over there. So, when you talk about my passion is students, I love working with students and I love working with people. There’s new in audiology that have innovative ideas. I love it. You know, it makes me work as an audiologist. My ideals and my thought aren’t stale because I’m around these great innovative minds. I truly love it. That’s the truth.”

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LS: “That’s awesome. So, why don’t we continue from there? Tell us what you do now. What has been the progression of your career to bring you back now?”

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Dr. B: “I work for one of the hearing aid manufacturers, Oticon, a clinic support audiologist for government services. And prior to that, just to understand, I was a supervisory audiologist at the Department of Veterans Affairs, the VA hospital for 17 years. I worked at the VA in Florida, the Miami VA. That’s where I worked. So, I definitely feel like my clinical experience and working with veterans and being a supervisor had helped in my current position. I love what I do now, because it’s putting all that together. I also worked in a school system when I first graduated, I was a newborn hearing screening supervisor. I trained technicians on completing newborn hearing screenings. I did some per diem work at some of the area hospitals. And I will say right now the position I have now is bringing all that together. All that experience because it’s important, you know, I may receive a call or a question from someone in the field about a difficult to test patient or they are not sure how to fit this patient so I can go back to experience a clinical experience. I love that I get to see that. It’s one thing we have amplification in school. You know, that’s part of what we do.”

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LS: “The hearing aid class.”

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Dr. B: “Yes, the hearing aid class. But to see the research and the minds that go into developing this technology is amazing. And then just to be able to educate, you know, audiologists as students on it honestly, I can’t explain it. It’s just really a great feeling. Because I feel like I’m still helping the end user, which is the patient and the family by having the opportunity to meet audiologists and clinicians and hearing care professionals from all over the world. So, I love what I do.”

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LS: “I had a little tiny bit of that experience when I took acoustics, and I was like, physicists and people are studying like psychoacoustics. That’s their whole field. Then the next class, we’re taking anatomy and studying the people who are using mice models to understand outer hair cell function. And they’re like lab with mice, microbiology people. And then your next class you learn about engineers who are putting together these circuits, micro-circuits. The more you learn, the more you realize how many people are involved, and how many fields of study come together in audiology. And it’s that intersection that is my favorite part of it, where I could have something to talk to an engineer, a biologist, a surgeon, a med student, a teacher, a teacher of the deaf, a sign language interpreter, like all these different people all kind of have a web within audiology.”

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Dr. B: “Absolutely. Now that’s, I’m telling you that is apart. I love and I work with a great team of people that chemistry is great. And everyone really comes and they’ll put forth their strengths. So, I like that. I don’t know everything about everything, but it might be that one of my teammates, they do and they’ll jump in and be like, ‘Hey, no worries, pass it to me, I’ll talk to him. It’s kind of working together. So, I do appreciate that.”

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LS: “And the other thing you mentioned, which is that you had all these different work settings, working in school, worked with the newborn hearing screening, hospital, work with manufacturers, customer support, like all those different things. Who knows what will be the next changes. Hahaha.”

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Dr. B: “Who knows, I like it. That’s what I like about our profession. Don’t narrow just to one thing, you’ll be surprised. I never thought that I would be on the manufacturing side. But I also didn’t think I would be a supervisor, but I was because when I first graduated, I really liked the clinical aspect of working with patients. And I still enjoy that. You know, there’s nothing like working with patients and their families. I just feel like I’m still able to do that in those different settings, just in a different way.”

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LS: “So, I actually had one of my placements at the VA in Brooklyn. At the time that I was there a couple years ago, there were some issues on a national level with wait times, and other, you know, VA issues, but the audiology department had like one of the best ratings within the hospital. And I had an excellent experience. The wait time was very short. And the the feedback, the patient satisfaction was very high. And I think part of that is because of the excellent access to the latest technology and all the remote things. And I’m very grateful that our veterans can have that service. That’s that’s really important.”

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Dr. B: “It is and that’s a great group, the Brooklyn VA. That’s a great group.”

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LS: “I’m so honored to have been part of that. Fabulous group.

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Dr. B: “Yes. I think that’s another great thing of what I do now. I literally get to meet audiologists all over at the different VAs, and active duty. So, the one thing that’s positive about COVID-19 is everybody’s moved to remote. So, typically, I wouldn’t travel to all the different sites on a typical day, but because of this, we’re able to meet people through zoom calls, you know, through just video conference calls, so I’ve been able to face to face see people that probably typically wouldn’t. I might see them out at a national seminar or something like that. And it’s been great. It’s been fun actually.”

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LS: “COVID has separated and connected. It’s done a lot of weird things. Hahaha. That’s very cool.

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Well, my last question is what advice can you offer to the individuals and their families that have someone in the family that has a hearing loss and that’s the old saying if one person has a hearing loss everyone has a hearing problem.

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Dr. B: “I must say, always, if you’re a parent, for your daughter or son, you don’t feel bad about being an advocate for your loved one, just from personal experience with my mom, we had to be an advocate. Maybe they can’t speak up for themselves or you know, their day to day. Don’t back down. You be an advocate. My second thing is do your research. I used to love, some people didn’t like this, when patients will come with all these articles and all this information. To me, I look at that as a chance for us to discuss it, discuss the information and to educate each other. And then you find a way of finding out what is the patient’s expectations. But as a caregiver or a family member, don’t be afraid to do your research. And hopefully you have a provider that is willing to sit there and talk to you and go over that information with you. And if you’re not, my third thing is get a second opinion. It’s okay, we’ll get another opinion. Find someone that you feel comfortable with, that’s patient, and will help you walk through the process. That’s always my three: Be an advocate, research, and if you need another opinion, that’s okay.”

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LS: “Now, if anyone has been listening to the show, I did not feed you those answers.”

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Dr. B: “No, you did not.”

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LS: “That’s like everything I ever talk about. So, I just had to make sure.”

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Dr. B: “Really?”

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LS: “Yes, I talk all the time about advocacy. In fact, I have the FIG method framework that I give workshops on for advocacy. That’s like one of the biggest things with parents. And the second opinion thing we have definitely mentioned that numerous times.”

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Dr. B: “You know what, I put myself in the shoes, honestly, it’s the steps that I had to walk through myself. So, yes, I’m an audiologist. But I’m also a parent and I’m also a daughter, or granddaughter. And so, these are things I had to live with, myself. So, I had to do those things. And I will say the most, if you do not feel comfortable, it’s okay to get a second opinion. Sometimes you might even need to get a third opinion to get it, you know, and that’s okay. Because at the end of the day, you’re trying to help this person live a comfortable life, one that they could thrive in an environment. You look at the angle and your angles and make sure your child or your family member is okay in the long run. So, you did not feed me that information, I promise. Hahaha.”

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LS: “I’m just listening to you thinking, wait a minute, you’re taking all my lines.

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Both laughing.

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It’s a good thing. I mean, I feel like many audiologists and audiology as a profession, we automatically need to come from a place that’s more patient centered to begin with, because it is about communication. It is about how are you navigating the challenges of your life? How’s work? And what’s the educational barriers for students in the classroom. We’re constantly looking at the effects of, and not just strictly the medical part of it. Or at least that’s how I experienced my education.”

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Dr. B: “Yeah, and you have to realize there is a person on the other end of what you’re doing. When I have students, that’s the main thing I tell them. You know, a lot of students come with the book knowledge. But I’ve always thought as a supervisor, my job was to help them develop that on that bedside manner, on how to bring it all together. Because sometimes it’s one thing to see something in the book, but let’s be honest, that doesn’t always happen on the clinical side. You know, and I found students concentrating so much on trying to get these exact marks. And I’m like, hey, but there’s a person on the other side, let’s find out about this patient. Let’s find out how we influence their life. Let’s, you know, it’s so much more to what we do.”

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LS: “I was recently speaking with a student who was telling me about vestibular testing, balance testing. And she was telling me that it’s so difficult to get all the different steps right. It’s quite a complicated test, the calorics. And she doesn’t want to take up time because here this person is, she’s making them dizzy. And she like wants them to be done with the test, but at the same time, still learning how to do it, you know, in a way that’s correct, but also efficient. And I feel like that’s one of the most difficult areas of Audiology that I personally don’t have that much clinical experience with. Oh, man, just thinking about people coming in and say that they’re dizzy or that they experience imbalance, that affects your whole quality of life. People are afraid to stand up from a chair also then become isolated and all that comes with that.”

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Dr. B: “Yes. And that’s the main, that’s the takeaway that what we do is so important in every aspect of how we’re influencing someone’s life. From balance to hearing loss, even with auditory processing, traumatic brain injuries… There’s so many things that we as audiologists should be proud of what we do, do it well, but always remember that there is someone on the other end that we’re helping. How would you want to feel if this was you? And that’s how you treat people, the way that you would want to be treated. That could be your child, your parent, your grandparent, and you would advocate and you would want them to live a quality life so always remember that.”

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LS: “That’s excellent advice. Thank you so, so much, Dr. Burt for coming on the show and for sharing your experiences with us.”

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Dr. B: “I appreciate you inviting me.”

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LS: “If anybody was interested in contacting you, or learning more about your work…”

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Dr. B: “They can always email me at drsaunjaburt@gmail.com. That’s one word.”

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LS: “I’ll have that linked in the show notes as well along with a full transcript of today’s conversation.”

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Dr. B: “Absolutely. Okay. And I also can be reached on LinkedIn as well.”

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LS: “That’s how I found you so that’s awesome.”

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Thank you again to Dr. Burt for coming on the show and sharing her story with us and so much great advice and wisdom. As always, you can find full transcripts of every episode at allaboutaudiology.com. I do love getting to know YOU!, the listeners over on Instagram and in the Facebook group, All About Audiology podcast Facebook group. It’s really, really, so wonderful and so meaningful to get to know you. Whether you’re a parent to a child with hearing loss, or a student of Audiology, or any related professional, I really appreciate this community and all of us coming together to make the journey a little bit more human. There’s people on every side of it.

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And again, I want to remind you that if you can become a patron of the show, it would absolutely help me produce more beautiful, heart centered conversations to share with you. You can become a patron at patreon.com/allaboutaudiology.

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And a quick reminder to the students out there that International Office Hours with Q and A take place on the first Wednesday of every month. And if you have any questions or anything you’d like to share with me, DM me on Instagram or Facebook and I can’t wait to hear your takeaways from today’s podcast episode.

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I’m Dr. Lilach Saperstein, and this is the All About Audiology podcast.

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The post Journey to AuD- overcoming obstacles- Episode 47 with Dr. Saunja Burt appeared first on All About Audiology.

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Welcome back to the All About Audiology podcast. I’m your host, Dr Lilach Saperstein and this is the show where we discuss topics on how audiology affects your life. Some guests come on and share their personal story and their relationship with their journey through hearing loss or being a parent to a child with hearing loss. Other times we have expert guests come and discuss and share their wisdom that they have from experience on a specific topic.

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For example, the most recent episode with Dr. Melissa Karp was about sound sensitivities and we touched on auditory processing order. These are topics that people have so many questions about. And I love that when we have these conversations on the podcast, it’s really a way to get to know the topic and understand some of the most common questions, but in a really simple and conversational way so that you don’t really, necessarily realize that you are learning, but you are!

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And I’ve also had listeners share with me that even if they don’t have a specific connection or interest in the topic of the episode, they still listen because they feel like so many of the things we discuss can apply to other areas of their life, to parenting, medical advocacy, to learning to stand up for yourself and use your voice.

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Well, today’s guest is Courtenay Turner and she shares her story of resilience and what it is like to have hearing loss all throughout growing up that wasn’t necessarily known about or treated and how her life changed once she was able to get the care that she needed.

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We’re also going to be having the next several episodes, which are more personal stories, people sharing their journeys which is just my favorite kind of interview to do because I love talking to fascinating and wonderful people around the world and sharing those conversations with you and hearing how they resonate with you. What stood out? What advice do you feel really applies to you? Sometimes you feel that you just really needed to hear that. And I love when that happens in our community.

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So, absolutely, tell me how it sits with you. Come and leave your comments on the podcast at allaboutaudiology.com. Leave a review on iTunes and join our community on Facebook, on Instagram and share your story with audiology.

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Dr. Lilach Saperstein: “So, welcome Courtenay and I hope you enjoy this episode.”

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Courtenay Turner: “Thank you so much for having me.”

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LS: “I’m so excited to hear your story. Let’s start from the beginning. Tell us about yourself and what was this right at the beginning of your life, this rubella?”

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CT: “Yeah. So, my mother contracted German measles during her first trimester of pregnancy. So, I was born with congenital rubella. I was one of the very fortunate. Lots of rubella babies do not primarily do as well as I did. However, it rendered me with several medical complications not limited to but including bilateral hearing impairment. We actually did not find out that I was hearing impaired until I was about six years old. I got hearing aids at the age of six. I had learned to speak by reading lips.”

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LS: “Wow!”

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CT: “So, yeah actually my first sound when I did get hearing aids. I stepped outside and asked my mom, ‘What’s that sound?’ It was birds chirping. I had never heard it before. I always get very nostalgic when I think about that. But I had several other complications. I was born with cataracts in my left eye. I am blind in one eye. I can tell you if the lights are on or off. I used to have a little bit more vision but I developed glaucoma, which attacked a lot of the optic nerve. So, my vision was compromised at that point, not that I was ever really functioning because the discrepancy between the two eyes was so great. So, when the strong eye is open, that one takes over. I was also born with hypotonic limbs, which means the muscles in my limbs didn’t develop. My growth was stunted, asymmetrical bone development, fine and graphic motor impairment. I am missing two teeth. There were lots and lots of challenges.”

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LS: “Yeah, your parents were very busy with you. Hahaha.”

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CT: “They were busy. They actually told my mom that the best she could hope for was to find a nice institution for me to spend my life.”

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LS: “Wow!”

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CT: “Yeah. Could you imagine? My mom was not taking no for an answer. She didn’t believe it. So, I’m very grateful for that.”

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LS: “That’s incredible. So, I can see where you get the whole idea, you know, talking about resilience and overcoming things. You just didn’t let that stand in your way. So, I’m interested in the language development, where you said you learned to read lips, like how much were you able to hear?”

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CT: “I have like maybe an 80% hearing loss without my hearing aids. It’s pretty significant. And both ears are about the same. One ear gets more clarity the other ear gets more volume, they kind of balance out, you know. I think it’s like, when you look at the graph, like some frequencies are higher in one ear versus the other. And the other frequencies are higher in the other ear. They’re almost the same, essentially.

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Yeah, so I did learn how to speak by reading lips, my first accent was actually almost British, because all of my baby nurses were from British islands. And so, I was watching how their mouth moved, and they move very differently. They’re much more closed and that affects the sound. So, not that my speech was super clear, but it was much more akin to that when I was first learning how to speak.”

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LS: “That’s very interesting about the accents, because you’re watching their mouth movements. Wow!”

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CT: “Yeah, so I did get hearing aids when I was about six years old. And that was a really interesting story because I was getting chronic ear infections as a kid. And so, of course, when I had an ear infection, I had even more trouble hearing. And my ears were clogged on top of already being hearing impaired. And my hearing loss is nerve deafness. There wasn’t a whole lot that could be done, other than hearing aids. But I had these chronic ear infections. And I remember one time I had an ear infection, and I would always talk to my mom while she did the dishes, and she was doing the dishes. And every time she turned away, she’d go put a dish in. I was like, ‘What, what? I beg you pardon, what?’ And she said, ‘You know what? Maybe we should look into getting you hearing aids just for when you have an ear infection, you know, so you don’t have to keep asking why.’ And we actually had a neighbor who lived diagonally behind us who wore hearing aids. She was very mildly hearing impaired but she was very immersed in the Deaf culture and wore hearing aids, and we were very aware of it.

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And so, my mom said maybe I should get hearing aids like her so that you’re not struggling so much. We went to the audiologist and they said she’s got a really significant hearing loss. She needs them full time. I don’t know how she’s even talking. And yeah, so I did get hearing aids at that point, and I remember when you talked about speech development, so I did learn to speak through reading lips, but you know, I definitely struggled with a lot of differentiation in certain words. And I remember in first grade, I got 100 on every spelling test. And then we got to the “S, H, C” chapter and I failed the test. And my teacher and I were very close. Like she ended up going to all of my roller rink birthday parties for years after, gave me like all these ceramic birthday gifts. We were very close. She was totally baffled. Like, ‘I don’t understand what happened. What’s going on?’ I remember, she pulled me to the side and she kept telling me to say, “chair, share.” And I was like, ‘share’, it just made no sense to me. Over and over again, she kept saying it. I’m like, ‘I don’t get it. There is no difference to me.’ And I remember getting so frustrated. I remember it. I was so frustrated. Like there is no difference. It’s share, you know, whatever word I made up but I just couldn’t tell the difference.

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So, we went to speech therapy. My speech therapist Nance, her name is Nancy but I called her Nance was actually from San Francisco. So, I just think it’s interesting because growing up people always thought I have a California accent and it makes sense because I grew up in Southern California, but it’s kind of funny. But they would always tell me when I’m really tired or drunk, I sound British. And I’m like, well, this makes sense. You know, I learned how to speak from somebody who’s from California. And my initial speech patterns came from, you know, British people. So, it makes sense.”

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LS: “It just goes to show how your environment affects what your input is. If you’re spending hours and hours a day with someone who’s helping you learn to speak and they speak a certain way, you’re gonna learn that way. I can’t imagine how much you were compensating, like how hard you had to work in order to do anything with that level of hearing loss and no awareness of it for so long.”

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CT: “Totally. Even now, there’s tremendous compensation. You know, when I first moved to California, I had a roommate I lived with for literally four months and she was Russian-Israeli. She had a very thick thick accent. And one day she says to me, ‘Is my accent so terrible because you never understand anything I’m saying?’ And I said to her, ‘No, it’s not you, it’ me. I’m deaf.’ And she says, ‘You don’t have to make excuses. I know my accent is really bad.’ “

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LS: “Way to bury the lead! You don’t tell people that!”

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CT: “I’m like, ‘Well, I’m not deaf, but like, really, I’m significantly hearing impaired’ and she didn’t believe me. She was like, ‘No, no, I’ll work on my accent.’ And I, you know, I took my hearing aids out and I showed her and she said, ‘Oh, shoot. Is that why when I go into the other room, or I turn away, you don’t hear me? You read lips?’ I’m not aware at this point how much I still depend on it but I do. It’s been really hard now with everybody wearing a mask. I have no idea what people are saying. I’m like, ‘Okay.’ Yeah.”

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LS: “It’s definitely a challenge. We’re all talking about that and how the ones with the little window with the plastic, that’s a great idea. But you’re really comi