The Rare Life

By Madeline Cheney

Curated by a fellow special needs mom in the trenches, The Rare Life features Madeline’s own experiences and takeaways as she parents her son Kimball who was born with several major birth defects due to his extremely rare genetic disorder, as well as conversations with other parents who share their own advice and stories of loving a child with medical complexities. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany special needs parenting. Guests will also include a variety of professionals, offering practical advice and solutions on anything from processing grief and trauma to ways to encourage language in a child with hearing and/or vision loss.

  1. 1.
    56: Season 4 Kickoff
    8:45
  2. 2.
    55: Season 3 Finale
    16:35
  3. 3.
    54: Disabled Adult Perspective w/Erica Stearns
    42:27
  4. 4.
    53: Diagnosis Jealousy w/ Kara Ryska
    36:43
  5. 5.
    52: The Story of Levi
    34:12
  6. 6.
    51: Isolation vs. Connection
    22:54
  7. 7.
    50: The Sibling Perspective w/ Katherine Acton
    39:27
  8. 8.
    49: The Story of Anna
    41:44
  1. 9.
    48: Lifting the Curtain
    35:24
  2. 10.
    47: Siblings w/ Katie Taylor, CCLS
    38:06
  3. 11.
    46: Confessions of a Special-Needs Mama w/ Anna Brown
    37:16
  4. 12.
    45: The Story of Emery
    31:54
  5. 13.
    44: Inclusion in the Hearing Loss World
    35:51
  6. 14.
    43: Emotional Safety in Marriage w/ Dr. Matt Townsend
    38:46
  7. 15.
    42: Friendship + Inclusion w/ Effie Parks
    37:24
  8. 16.
    41: The Story of Ford
    36:59
  9. 17.
    40: Wendy + the Sibling Experience
    53:15
  10. 18.
    39: Inclusive Children’s Books w/ Macy Gilson, Megan DeJarnett, and Jessica Parham
    42:29
  11. 19.
    38: Social Media + SN Community w/ Jess Wolff
    26:47
  12. 20.
    37: The Story of Lily
    33:27
  13. 21.
    36: Rare Disease Day 2021, The Parent-Perspective
    42:53
  14. 22.
    35: Season 3 Kickoff
    7:25
  15. 23.
    34: Season 2 Finale
    13:45
  16. 24.
    33: It’s OK to be Angry, w/ Orley Bills, LCSW
    35:43
  17. 25.
    32: Self-Care w/ Jessica Patay
    33:26
  18. 26.
    31: The Story of Ryan
    36:56
  19. 27.
    30: You Are Exactly What Your Child Needs
    25:48
  20. 28.
    29: Resilient Mindset w/ Claudia Taboada
    33:02
  21. 29.
    28: Living with Grief w/ Anna Stanfield
    38:58
  22. 30.
    27: The Story of Gilbert
    34:02
  23. 31.
    26: The NICU Experience
    37:21
  24. 32.
    25: EMDR Trauma Therapy w/ Rosey Schaefermeyer, LCSW
    37:33
  25. 33.
    24: Disability Advocacy w/ Jenny McLelland
    28:22
  26. 34.
    23: The Story of James
    33:30
  27. 35.
    22: It’s All My Fault
    31:55
  28. 36.
    21: Giving Back w/ Tara Docekal
    33:04
  29. 37.
    20: Anticipatory Grief w/ Katie
    45:40
  30. 38.
    19: The Story of Claire
    44:18
  31. 39.
    18: Season 2 Kickoff
    6:23
  32. 40.
    17: Season 1 Finale
    8:23
  33. 41.
    16: Strategies to Support Selective Eaters w/ Kimberly Hirte, SLP
    37:41
  34. 42.
    15: Communicating w/ a Nonverbal Child
    24:39
  35. 43.
    14: The Story of Miller
    48:16
  36. 44.
    13: Feeding Tube Adventures
    37:39
  37. 45.
    12: 3 Fun Ways to Facilitate Language Development w/ Hearing Specialist Angie
    31:14
  38. 46.
    11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
    37:13
  39. 47.
    10: The Story of Sloan
    43:46
  40. 48.
    9: 3 Tips for Taking Charge of Your Therapy and Medical Team
    26:33
  41. 49.
    8: Advocating Using the FIG Method w/ Dr. Saperstein
    26:35
  42. 50.
    7: Educating Others About Your Child’s Differences w/ Emily Young
    30:16

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