Elizabeth Aquino and Jason Lehmbeck
Join us on our podcast journey to learn from conversations with OUR kinds of celebrities - caregivers living this life honestly and making an impact for our children and others. We’ll also be talking to the other experts, those who help us and fight for us in education and the medical field, for disability rights and so on.
We had a great conversation in today's episode with Monika Jones, a mom who abandoned her legal career after her first son was born with a massive unilateral brain malformation, which caused him to have hundreds of seizures a day and led to a surgery to remove half his brain. Monika has dedicated herself to serving the community of children who need brain surgery to stop seizures that medications cannot control. She is a staunch advocate for the educational rights of children with disabilities and believes that every child - no matter how complex their support needs - has the capacity to learn. Monika lives in Altadena with her husband, Brad, her boys Henry and Thomas, and two very spoiled dogs. In 2011, she and her husband founded the Brain Recovery Project to help children reach their full potential after epilepsy surgery. They were both frustrated with the lack of direction after surgery and wanted to help other parents navigate similar paths. “We didn't know what to do with our child [after surgery] to help him learn how to walk and learn how to talk. And was he ever going to read? What was his life going to be like? There was no roadmap, because research wasn't really focusing on what the effects of these surgeries are and how to improve the outcomes.” The Brain Recovery Project offers special education advocacy and parent education, in addition to family and professional conferences and other education initiatives.
40 min 37 sec
We are so excited that we had the opportunity to speak with Anat Baniel, a woman whose work continues to be at the forefront of the emerging brain plasticity field, as well as the understanding of the role of movement in child development, health and vitality. Anat is the founder of the Anat Baniel Method® NeuroMovement®,a holistic approach that utilizes movement in all its forms. This approach helps upgrade the functioning of your brain, which in turn helps you learn and think better, overcome pain and move better, and achieve new levels of performance. Over the past 30 plus years, Anat has worked with athletes, musicians, and other high performers as well as thousands of children diagnosed with cerebral palsy, autism spectrum disorder, ADHD, genetic disorders and more. She developed Anat Baniel Method NeuroMovement that provides both practice and theory supported by current brain science. She is the author of the highly acclaimed book Kids Beyond Limits and the bestselling Move Into Life: NeuroMovement for Lifelong Vitality.
55 min 28 sec
It is our great privilege to have Ilene Chazan on the podcast today, particularly as she has rounded out the trio -- her husband, Chris Gabbard, and daughter, Clio Chazan-Gabbard were also guests, and Jason and I had the unique privilege of interviewing each member of their family about their lives as caregivers. They are terrific individuals and provide personal perspectives on their life with the late August Chazan-Gabbard, Ilene and Chris' son and Clio's older brother. Ilene describes herself as a mother, wife, physical therapist and Pilates instructor. She grew up in a suburb of Los Angeles and went to college in Santa Barbara, near the ocean, which she loves. In 1990, her love of science and physical activity brought her to Boston where she became a physical therapist. She began her career in San Francisco, where she met Chris. The couple married in 1992, and in August of 1999, she gave birth to their first child, August Chazan-Gabbard who was the subject of prior podcasts with her husband and daughter. In 2001, the small family moved to Jacksonville, Florida for Chris' work and later that year, Ilene gave birth to Clio. Currently, Ilene owns a small business in Jacksonville, where she practices as a physical therapist and Pilates instructor. She still loves nature, physical activity, being a mother and cooking.
45 min 51 sec
Ben Marcovitz is an entrepreneur, nonprofit leader, leadership consultant, and executive coach. When his first child Zoe was born with a heart abnormality, the doctors told Ben and his wife that their daughter had little chance of developing at all. Seven years later, Ben says that things turned out better than they could have imagined, and he stresses the importance of having hope even when there is only a small chance of success. Ben’s experience as a caregiver has transformed the way that he approaches his work as an educator.
1 hr 8 min
We are so excited to release our newest podcast with guest Ryane Granados, who is a writer, recently retired professor, wife, and mom. We had a fantastic conversation about Ryane’s work as an advocate for parents and children with disabilities, the importance of theme songs and laugh therapy, and the intersection of invisible diagnoses with race, gender, and implicit bias.
42 min 7 sec
This week, we’re excited to release our newest podcast with guest Megan Dolan. Megan is an actor and writer who self-identifies as a “lemur mom” -- because, in her words, “we can’t all be tiger moms.” We had a great conversation about what it means to be a lemur mom, how Megan has worked through her own diagnosis along this journey, and balancing home life with her wonderful creative work. Click the link in our bio for the full episode!
50 min 20 sec
Strap on your seatbelts! You're in for a real ride with today's guest, Erin Starks. Her bio alone will leave you shaking your head in wonder, so wait until you hear all that she shares with us! As an educator, health advocate and mother of six children, Erin has spent more than a decade advocating for the rights of children and young adults with disabilities and their families. She has worked with fellow educators, families and students in underserved communities throughout Atlanta and South Los Angeles. Her work is anchored in the belief that all children deserve the right to access valuable resources that enhance their learning in inclusive, diverse learning communities. She's leveraged her experience as the mother of a sixteen year old daughter, Kamiyah, who was born with a rare form of dwarfism, to continue her advocacy work for special education students through elementary school and beyond. In addition to her work in the classroom, Erin is the Founder and Director of OHMGirls Yoga, an inclusive yoga community devoted to helping teens cultivate resilience, through mindfulness, movement, and meaningful community. She’s also the Founder and Co-Owner of Miya Organics, a wellness company with a mission to develop products that have a positive environmental impact. In January 2020, Miya Organics will be launching a pilot program that provides work-based training to young adults with special needs who have a desire to learn the art of candle making and enhance their independent living skills, while creating products that add value to the lives of others.
54 min 22 sec
Jason and I have had a brief hiatus and are back this week with Christy Shake, a writer, blogger, epilepsy advocate and champion of medical marijuana. Originally from the Seattle area, Christy came to Maine with her partner, professor and photographer Michael Kolster, by way of San Francisco where she had begun a successful career as an apparel designer. The birth of their son Calvin, now fifteen, required Christy to surrender her profession in order to care for him. Within weeks of Calvin’s complicated and fraught birth, she began writing about the experience. In 2010 she launched her blog, Calvin’s Story, in which she explores, among other things, motherhood, disability, epilepsy, medical cannabis, loss, grief, bigotry and injustice. She, Michael and Calvin live in Brunswick, Maine with their wackadoodle, Smellie. In today's podcast Christy speaks as honestly about the grit of parenting a child with significant disabilities as she sheds light on the grace of it all.
40 min 52 sec
It's been a few weeks since we recorded a conversation with seventeen-year-old Clio Chazan-Gabbard, the daughter of our recent guest Chris Gabbard. During those weeks, we have touched on just how moved and almost overwhelmed we were by this beautiful human being. We are so honored as parents of children with disabilities that Clio shared her life and experience with us. We know that you will feel the same and hope that you will share the conversation with your own children.
34 min 14 sec
Regular listeners know that we usually talk with caregivers and siblings of children and young adults with disabilities, but every now and then we also like to pick the brains of or highlight those people who support us in the care of our children. Dr. Audrey Griesbach is a developmental pediatrician in the Los Angeles area whose practice is devoted entirely to the comprehensive evaluation and treatment of children with a wide variety of neuro-developmental disorders, including autism, cerebral palsy, genetic disorders, developmental and cognitive delays, learning disabilities, and ADHD and other behavioral disorders.
54 min 9 sec
This week, we had the pleasure of speaking with guest Chris Gabbard, author of “A Life Beyond Reason: A Father’s Memoir.” Chris is an associate professor at the University of Northern Florida. He published “A Life Beyond Reason” after his son August, who was born with significant disabilities, passed away in 2013. This week’s podcast delves into the beautiful life story of August and the real world consequences of a broken safety net.
49 min 20 sec
A writer and artist, Amy Webb (aka Miggy) is a passionate advocate for disability rights and writes about the issues her family frequently faces. She interviews other special needs' families and individuals with the hope of changing the perception of disability one story at a time. In today's podcast, we delved into Amy's journey and learned that Amy's life as an artist is what sustains her, what gets her out of bed in the morning and persists despite the challenges and joys of parenting in general. Amy shared the genesis of her children's book When Charley Met Emma, a creation that grew out of a blog post that she's written for years called Miggy's Guide to Navigating a Special Needs Encounter. When Charley Met Emma, illustrated by Merrilee Liddiard, is a children's book about a boy named Charlie who goes to a playground with his mother and has an encounter with a girl in a wheelchair -- a girl named Emma with limb differences. We hope you enjoy the show and we highly recommend you check out the book. Please subscribe to the show and give us a review on your favorite podcast provider: Apple Podcasts: bit.ly/ApplePodcastReview Google Play: bit.ly/GooglePodcastReview Spotify: bit.ly/SpotifyPodcastReview
47 min 25 sec
We have been on a brief hiatus due to a couple of chaotic weeks for your favorite podcast hosts. In this episode Elizabeth and Jason check-in on each other, talk about an Alaskan adventure, children leaving the nest and much more. We also highlight our favorite episodes and insights from the last few months of shows. We hope you enjoy it! If you have a minute, please subscribe to the show and give us a review on your favorite podcast provider: Apple Podcasts: http://bit.ly/ApplePodcastReview Google Play: http://bit.ly/GooglePodcastReview Spotify: http://bit.ly/SpotifyPodcastReview
25 min 8 sec
Elizabeth met Amy Silverman in real life when she was asked to "engage in conversation" with her at my local independent bookstore. She knew of Amy at the time as a journalist who had recently published a memoir called My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome. We parents of children with disabilities and special needs know one another because of the communities we have created, and Elizabeth had seen Amy's work online, had friends who knew her and was otherwise familiar with her, but it was such a joy and honor to finally meet and then talk writing, books and -- well -- parenting a kid with special needs. In today's podcast, we got to pick Amy's brain on her new projects and what's been happening with her and her family since the book was published. Amy is funny -- so funny, in fact, that we laughed throughout the whole episode, and I think you'll very much enjoy joining us! Amy is a freelance writer/editor/teacher in her hometown of Phoenix, Arizona, a place she's still learning to love. She's married to Ray Stern, an editor at Phoenix New Times, the alternative newsweekly. They have two children, Annabelle and Sophie. When Sophie was born, the couple were surprised to learn that she had Down Syndrome. As Amy said, "Wait a second, I have never written about Down syndrome. I have never met a person with Down syndrome. I don't know anything about people with intellectual disabilities. [I] had to have a real come-to-Jesus with myself, which is not easy for a Jewish girl, and realize that I was the one who avoided people with Down syndrome in the checkout line at Safeway." In today's conversation, we spoke about the transitions our children face when their older siblings leave home for college, and that led to Amy telling us about her daughter Sophie's persistent questioning of her own place in the world.
52 min 3 sec
In today's podcast, we had the great pleasure of talking with Heather Barnes Jackson, the co-founder and CEO of the Realm of Caring Foundation (RoC), an internationally acclaimed non-profit primarily serving families who are dealing with life-limiting and chronic health conditions and are using cannabinoid therapy. The foundation serves over 55,000 families and 1500 Health Care Professionals from all over the world through their care center that speaks 5 languages and fields over 7000 inquiries monthly. They reach over 1 million people a month through their efforts and awareness. RoC is doing innovative and first of its kind research with Johns Hopkins University, collaborating on the largest registry in the US. They use this research to deliver revolutionary education to the community. RoC has distributed over $350,000 in grants to families in need. They also have aided in over twenty states adding cannabis legislation since 2014. Heather talked a bit about how she started Realm of Caring and how it grew over 10,000% since 2013. She's also a published researcher, an author and a speaker who has presented in 7 countries. Today she shared with us her passion for community, social entrepreneurship and "disrupting the status quo." We got tips on how to turn off social media and take care of yourself, and she wowed us with an intense discussion of her most recent obsession -- suffering and grief and praise.
40 min 25 sec
Jason and I were particularly excited to invite Dr. Rita Eichenstein on the podcast because her book has been cited many times by our guests -- including Jason! -- as one of the most meaningful ones they'd read as a caregiver and one that they regularly recommended to other caregivers. She wrote Not What I Expected: Help and Hope for Parents of Atypical Children to help parents learn to cope with "the roller coaster of feelings parents encounter parenting a child who is different from what 'they expected.'" Rita is a noted psychologist, pediatric neuropsychologist and author, renowned in the field of child development. She also has a private practice in Los Angeles and has served both atypical children of all ages and their parents for over 25 years.
54 min 55 sec
In today's podcast we spoke with Jessica Patay a mother, wife, and advocate for mothers of special needs children. She is also a coffee and book addict, who has no business buying any more books this century. Or shoes. Married to her husband Chris for 22 years, she uses her psychology degree to artfully and carefully lead her lovely brood of 3 teenagers, Luke (18), Ryan (15), and Kate (13). Ryan was diagnosed at birth with Prader Willi Syndrome, a rare genetic disorder marked by hyperphagia, low muscle tone, obsessiveness and anxiety. Ryan is her "most grateful child," Jessica says, a sensitive boy who suffers from extreme anxiety but whose heart is huge. In today's podcast, Jason, Jessica and I spoke about the intuitive powers of our children, their empathy for others and sensitivities that belie their diagnoses of cognitive impairment. We also spoke about sibling issues, and Jessica shared some tips and great ideas on how their family has managed to juggle alone time with each of their typical children. Our discussion includes Jessica's current passion, the organization she has created called We Are Brave Together. Jessica describes the group as "a beautiful collision" of her life as a special needs mother and a passionate lover of female friendships and closeness.
52 min 42 sec
In today’s episode, we covered a broad range of topics with Hillary Smiley including practicing gratitude and finding the gifts in the everyday moments of this life. "Anything, if offered to God, can and will become your gateway to joy." -Elisabeth Elliot That's a quote that Hillary Smiley uses as a touchstone. She is a photographer based in Los Angeles and has been married for 15 years. They have four children, the oldest is thirteen and the youngest, aged four. Their third child, ten-year old Luke, was born with chromosomal and brain abnormalities and the rarest form of a rare syndrome. Despite the challenges that come with being a special needs parent, Hillary regularly looks for and counts the gifts that God has given her, especially in the often missed, everyday moments of life.
44 min 41 sec
In today’s episode, we had the pleasure of speaking with Amialya (Mia) Durairaj a writer, communications consultant, advocate and caregiver of two children with special needs. We covered a broad range of topics about work life balance as a special needs parent and the special skills we develop along the caregiver journey. Mia is a mom of identical twin toddlers, both of whom have special needs. The girls, now aged two, were born three months early and had respiratory and cardiac issues related to prematurity. Both girls have had numerous surgeries and spent many months in and out of the hospital, but Mia reports that "things continue to look up, and they're both doing great now." Mia, her husband and the girls live in San Diego, California. When she isn't wrangling her kids, Mia is a health writer and communications consultant at Little Octopus, LLC, and her work has been published in The Washington Post, a recent World Health Organization report, Hand to Hold, The Mighty and more. She's also the co-creator of Mindful Return's Balancing Career with a Special Needs Baby program which has been featured in numerous parenting and family magazines and periodicals. As if that isn't enough to keep her busy, she's the founder and co-chair of the Cardiac Family Advisory Council at Rady Children's Hospital in San Diego, California.
44 min 57 sec
Finally a podcast with siblings! Given the repeated request for a podcast with siblings, we've finally come through and are thrilled to introduce you to two stellar young men: Henry and Toby. Henry Beglinger is a native Angeleno, the middle child and younger brother to Sophie, Elizabeth's daughter who has a refractory seizure disorder and severe developmental disabilities. Toby Okoye also attends Gonzaga where fate threw Henry and him together as friends and now roommates. Toby lives with his parents and siblings in Puyallup, a small city outside of Seattle. He is the oldest of four children by six years; his younger sister and two brothers are triplets who were born prematurely and who each have autism. As our discussion with Henry and Toby progressed, we hung back with our mouths open, stunned at the beauty and wisdom that came out of these young men. We talked about the guys' early experiences with their siblings, when they figured out that something was "different" about their siblings, and how they coped with stressful situations over the years.
35 min 43 sec
Jason and I were so excited to talk this week with A. Laura Brody, an artist here in Los Angeles with an exquisite sensibility. She describes herself as "a sculptor of the human body and its vehicles." Her sculptures are conceived with "a commitment to social justice and are inspired by art history and the spirit of scientific discovery." Her career as a professional costumer coupled with a passion for reuse gave her the skills needed to turn wheelchairs, walkers and mobility scooters into sculptural works of art. Laura believes that disability is a natural human condition and that instead of "fixing," hiding or denying it, we should make it "thrive."
42 min 25 sec
In today's podcast, Jason and Elizabeth have a great discussion with Ray Mirzabegian, husband to Arsinah and father to two girls, 14 year old Emily and 18-month old Ileana. Ray's daughter Emily was diagnosed as an infant with Dravet Syndrome, a rare and debilitating epilepsy marked by brutal seizures resistant to pharmaceuticals. On the podcast, Jason, Elizabeth and Ray discuss Ray's career change, his drive to help Emily and the countless other children like her. It's an amazing story of a man quite literally obsessed, who works tirelessly now, with his brothers, in charge of the California distribution of Charlotte's Web.™ He founded the California Chapter of the Realm of Caring™ Foundation and launched an organic THC products company called Canniatric™, which caters strictly to the medical cannabis pediatric patients suffering from neurological disorders and childhood cancers. Ray spoke about all of the challenges and obstacles that come in the industry, the "cat and mouse" game that it entails and, as always, the stories of the children and families that keep him going.
44 min 38 sec
In today's podcast, Jason and Elizabeth have a lively discussion with Roslyn Rawlins, a single mother of two young women, Ryan (23 years old) and Sydney (19 years old), and an entrepreneur with lifelong experience in healthcare. Elizabeth met Roslyn some years ago online as they both have daughters with epilepsy. The conversation today delved into all the experiences Roslyn had as a single mom and caregiver for a child who had significant medical issues but who is doing fantastic now as a young adult. The podcast therefore has a bit of a different spin. We've talked so much here on Who Lives Like This?! with caregivers of very young children or of children who are now young adults living at home with profound and continued caregiving needs. While Roslyn's years as a caregiver were arduous and even harrowing, we appreciate how important and interesting it is to speak to someone who has "been in the crunch" and is now in a sort of transition period with her daughter off living her life independently.
44 min 35 sec
Lisa Lilienthal is a wife and mother, a writer and publicist, using storytelling to build mission-based brands. She’s used a wheelchair since age 8, and together with her husband Gene, is raising two kids with special needs. In today's podcast, Jason, Elizabeth and Lisa had a wide-ranging discussion about Lisa's unique experience of raising two kids with special needs even as she navigates the world as a disabled person herself.
1 hr 2 min
Today we're doing something a little different at Who Lives Like This?!, and in so doing, building our community a little bit more. We're cross-podcasting -- is that an expression? -- with podcaster Mary Susan McConnell. The Mama Bear podcast is "a place for women raising children with special needs to get together and chat about life." In today's podcast, Jason, Elizabeth and Mary Susan talk primarily about caregiver burn-out and planning for the future, but they agreed that the connections made "in this life we live" have been profound and completely life-altering.
57 min 36 sec
Jason, Elizabeth and Dr Bonni Goldstein discuss the history of the marijuana plant and its medicinal benefits, as well as the obstacles families of children with complex healthcare needs have faced in access and use of cannabis medicine for their children. Dr. Bonni also speaks as a caregiver to caregivers. In the show she also reveals how the endocannabinoid system of caregivers and those who experience chronic stress can become unbalanced. Bonni Goldstein, MD is the Medical Director of Canna-Centers Wellness and Education, a California-based medical practice devoted to educating patients about the use of cannabis for serious and chronic medical conditions. After years of working in the specialty of Pediatric Emergency medicine, she developed an interest in the science of medical cannabis after witnessing its beneficial effects in an ill friend. Since then she has evaluated thousands of patients for use of medical cannabis. She has a special interest in treating children with intractable epilepsy, autism, and advanced cancers. Dr. Goldstein recently authored the book Cannabis Revealed: How the world’s most misunderstood plant is treating everything from chronic pain to epilepsy. Dr. Goldstein has presented her clinical experiences at both national and international medical conferences. She has appeared on the TV show The Doctors and is featured in a new documentary called “Weed the People” featured at the 2018 South by Southwest festival.
1 hr 2 min
November is National Family Caregivers Month, otherwise known by the fabulous acronym NaFaCaMo. While we at Who Lives Like This?! are thrilled to have a whole month dedicated to celebrating our fabulous selves, we can't help but laugh at the profane possibilities of both pronouncing its acronym and -- well -- the comic liberties of celebrating caregivers in general. Our beloved Sandra Stein, who graced us with her inimitable wit some months ago, is back in today's podcast, reading poetry, regaling us with stories of caregiving and even Mother FaCaing Miracles! Enjoy, and please join our FaceBook group to send us YOUR stories! Disclaimer: Profanity is involved, so please abstain if you are offended by it!
52 min 8 sec
it might be hard to believe, given the subject matter, but today we had a rocking good conversation with Traci Nagy, the founder of Feeding Tube Awareness Foundation. We all agreed that never had we dreamed of such a discussion, but neither had we dreamed that we would be caregivers of children with complex medical needs and connected to one another in such interesting and enduring ways. Traci created the non-profit in 2010 to educate the public and change perceptions of tube feeding. Her son Lucas was only thirteen days old when Traci just knew something was wrong after experiencing the baby's near-constant projectile vomiting. She couldn't convince her first pediatrician that it was more than just the usual baby spit-up, though, so it was actually weeks before the baby was finally seen by a gastroenterologist. When Lucas was two months old, the family heard what to them at the time was very scary news that Lucas would need a feeding tube.
54 min 58 sec
In this week's podcast, we had the pleasure of speaking with Jennifer Siedman and Blyth Taylor Lord about an amazing community called the Courageous Parents Network. The conversation was a deep one and touched on palliative care, bereavement, grief, friendship and sustenance through connection, but it was so profound and inspiring is is hard to convey its power in words. Anyone visiting here should just listen to it ...
46 min 30 sec
In today’s episode, we have the pleasure of speaking to Michelle Wolf. She is a parent, disability advocate, non-profit innovator and social services entrepreneur. We had a wide ranging conversation about special needs trust and special needs bar mitzvahs.
46 min 39 sec
Jason and Elizabeth are thrilled that they've now recorded 10 podcasts with 10 amazing people and have so much in store for Who Lives Like This?! During today's podcast, the two banter about what's been happening in their lives since they last spoke and launched the podcast which, obviously, is mostly stuff related to caregiving. The podcast has been an incredible venture so far, both hosts agree, and they discuss which episodes have resonated in particular for them. Jason has been inspired and moved by several of the guests' talk of self-care, particularly Paige Figi's in Climbing Mountains with Paige Figi. He also had a kind of "come to Jesus" moment hearing about how Jeneva Stone keeps up a steady stream of communication and talk with her non-verbal son Robert in Writing, Identity and DNA. Elizabeth was affected profoundly by the conversation with Josh Fyman about how he and his wife decided to place their daughter in a residential setting in Making a Decision About Who Will Care for Your Child.
In today’s podcast, we spoke with Miriam Feldman. Miriam is an artist, writer and caregiver. We had a wide ranging conversation about having a child with severe mental health illness, the impact on siblings and the honor of caregiving. We hope you enjoy the show ...
50 min 27 sec
In today's podcast, we talk to Jeneva Stone, a writer, caregiver and "sub-amateur" photographer. Jeneva and her husband Roger live in Maryland and have two children, an eighteen year old daughter, Edith and a twenty-one year old son, Robert. Robert has the rarest of rare diseases, so rare that he was undiagnosed for 14 years. Robert's dystonia is globalized and progressive; he is, essentially "locked in." Despite being non-verbal, Robert has much to say and uses sophisticated eye-gaze technology to communicate. He has a wicked sense of humor, and Jeneva and Roger agree that he is "the happiest kid in the world." We had a wide ranging conversation about her family's 14 year odyssey to find a diagnosis for their son, learning the language of non-verbal communication and the tricky interplay between being a writer and a caregiver. We hope you enjoy the show ...
1 hr 2 min
In today’s podcast, we spoke with Ellen Seidman. Ellen is the mom of 3 kids, a magazine editor and the blogger behind the popular blog www.lovethatmax.com: about kids with disabilities who kick butt! We had a wide ranging conversation about the positive impact Facebook has had despite it’s recent bad press, the Starbucks straw controversy and we even found time to come up with a Willie Nelson inspired caregiver song. We hope you enjoy the show ...
48 min 18 sec
Laura Hatcher is a graphic designer, a small business owner, an adjunct professor and the Director of Communications for Little Lobbyists. She is the mother of a sixteen year old daughter, Olivia, and a twelve year old son, Simon. During a routine ultrasound in the latter part of her pregnancy with Simon, she and her husband Brian learned that the baby had hydrocephaly. When Simon was born they also discovered that he had had a stroke in utero whose effects would cascade into multiple problems, including cerebral palsy and epilepsy. Simon has cognitive and physical disabilities but a phenomenal sense of humor. Laura says, "Simon has the best laugh you've ever heard." He is currently obsessed with Sesame Street and wants to be a chef when he grows up. In today's podcast, Laura, Jason and Elizabeth discuss the intricacies of genetic testing, the work of The NIH Undiagnosed Diseases Program and how they each grapple with the mysteries of their children's diagnosed and undiagnosed problems. When Simon's motor abilities began to decline, they discovered optic nerve atrophy and neurological hearing loss. That led to genetic testing and the discovery that Simon had a unique genetic mutation that was the cause of all of his issues and possibly even his stroke.
42 min 47 sec
In today's podcast, Sandra Stein joins Elizabeth and Jason to discuss how having a sense is necessary for not just dealing with the day-to-day challenges of caregiving but also personal survival. Even though they have never met in person, Elizabeth and Sandra have a long history of amusing one another on even the hardest of days with telephone calls and colorful texts. On the show we talk with Sandra about using humor as a secret caregiver weapon, finding joy in the little moments and the magic of velcro cleaners. Sandra Joy Stein lives with her husband Matt and son Ravi in New York. Ravi spent the first two years of his life as a typical baby and toddler, but when he was just over two years old, he woke up one morning in a seizure and ended up in a hospital for the next fifteen months. Diagnosed with an autoimmune encephalitis, Ravi's rare disease caused catastrophic neurologic difficulties. He is now a lively nine years old with an indomitable spirit and a smile that lights up everyone around him.
56 min 5 sec
In today's podcast, Josh Fyman tells the story of how their family decided to move Penny to a residential setting after a period of intense medical issues that nearly cost her her life. "The situation deteriorated slowly," he says, "and then all at once." Josh was open about how that decision has impacted them and, most importantly, Penny. He discusses the shock of how it happened, the guilt he's felt, others' judgements, how his team of family and advisors helped them to make that decision and the immediate aftermath. It's a sensitive subject for all caregivers of severely disabled children and young adults, and Josh was honest and incredibly informative in how it's affected him as a father. He is generous with his advice for other parents facing similar circumstances. Josh lives with his wife Avigael and young son Morgan on Long Island. His seven year old daughter Penny has lived for the past 3 1/2 years at St. Mary's Hospital for Children. Penny was diagnosed with Aicardi Syndrome, a very rare seizure disorder. Although the range of severity is large, Penny's disabilities are the most severe, and in addition to seizures she is completely dependent on caregivers for all life activities.
58 min 46 sec
In today’s podcast, we talk to @Natalie Weaver about the transition from a private family life to advocate for our child on the national stage. Natalie’s advocacy is inspired by her daughter Sophia who wouldn't survive without healthcare. She is the founder of Sophia’s Voice which aims to help people in the disability community in various ways. She is also the co-founder of Advocates for Medically Fragile Kids NC and a founder’s council member for United States of Care. While Natalie had always dreamed of being a mother, she never saw herself as an advocate, but once she started, she says that she felt “exhilarated". We had a wide ranging conversation about caregiving, the transition to advocating nationally and the not so fun side of dealing with internet trolls. We hope you enjoy the conversation as much as we did.
40 min 9 sec
You might already have heard of Paige Figi -- or at least her daughter Charlotte of the eponymous "Charlotte's Web," a type of therapeutic hemp oil with low THC and high CBD (CBD, or Cannabidiol, is a known anticonvulsant, reducing epileptic symptoms without the psychotropic effect). Raising a daughter with Dravet syndrome, a serious form of epilepsy, Paige -- a mother of three in Colorado -- was desperate to find a treatment that would help her then 5-year old live a better life. Through that journey of finding a successful therapy for her daughter's seizures, Paige convened a chorus of voices of more than 15,000 families. She and her daughter have been featured in The New York Times, The Wall Street Journal, on a CNN special hosted by Dr. Sanjay Gupta, and most recently on Dateline NBC. Paige is also the Executive Director of Coalition for Access Now, a non-profit organization led by families committed to educating the public and lawmakers on the health benefits associated with natural therapies derived from cannabis for chronic health conditions. On the podcast, we talk to Paige not only about what's made her a famous caregiver but what's happened after all the publicity, all the advocacy and entrepreneurship. An avowed adventurer -- mountain climbing and dirt biking are her passions -- Paige discussed candidly her intent to get back to her dreams. In fact, we recorded the podcast while Paige was training and preparing for a climb of Denali, the highest peak in North America.
52 min 15 sec
Ted Lyde is a comedian and the father of a special needs son and a "near-genius" daughter. His son Jackson is fifteen years old and his daughter Grace is seventeen. Jackson has muscular ataxia and is non-verbal, but Ted says he's still very loud and celebratory, even at 5 am. He's been married to his wife Jaime for many years. In today's podcast, we discussed everything from what it means to be a father of a special needs son, how anger and grieving affect mothers and fathers differently, and what discipline is appropriate for special needs kids to what it means to be a man and a provider. We also talked and laughed a lot about sleep -- or the lack thereof. Ted claimed to have not had a profound night's sleep for sixteen years, at least since he became a father.
53 min 30 sec
Our guest today is Elena Hung. She is the President and Co-Founder of Little Lobbyists, a parent-led organization that advocates for children with complex medical needs. Her daughter Xiomara (whose name means "ready for battle") was born with a number of medical issues. Elena, Xiomara, and families like them have been visiting Capitol Hill and speaking with lawmakers and their staffers, talking about what is possible with access to quality, affordable health care, and what is at stake without it. Elena: "We are story tellers. We are truth tellers. We are sharing the humanity of children with complex medical needs."
46 min 47 sec
Elizabeth Aquino and Jason Lehmbeck are the creators and hosts of the WhoTF Lives Like This?! podcast and blog. Another caregiver of a special needs child who lived across the country connected them with one another, and they found out that they not only both live in Los Angeles but within miles of one another! In today's podcast, Jason and Elizabeth interview one another in much the way they will be interviewing the other caregivers, touching on their individual passions and motivations, their children and, of course, their lives as caregivers. The conversation begins.
33 min 12 sec
Who Live's Like this Podcast: Join us on our podcast journey to learn from conversations with OUR kinds of celebrities - caregivers living this life honestly and making an impact for our children and others. We’ll also be talking to the other experts, those who help us and fight for us in education and the medical field, for disability rights and so on.
2 min 41 sec