The Rare Life
By Madeline Cheney
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Category: Parenting
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Subscribers: 9
Reviews: 0
Episodes: 194
Description
This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney.
Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting.
Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
| Episode | Date |
|---|---|
|
159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins
|
May 02, 2024 |
|
158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now
|
Apr 25, 2024 |
|
157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold
|
Apr 18, 2024 |
|
156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins
|
Apr 11, 2024 |
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155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings
|
Apr 04, 2024 |
|
154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson
|
Mar 28, 2024 |
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153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins
|
Mar 21, 2024 |
|
152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It
|
Mar 14, 2024 |
|
151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath
|
Mar 07, 2024 |
|
150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider
|
Feb 29, 2024 |
|
Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser!
|
Feb 27, 2024 |
|
149: Annie’s Story | Physician Mom, Infertility, + Comparison Between Twins
|
Feb 22, 2024 |
|
Mini Episode: An Exciting Update for Our Family and Friends Fundraiser!
|
Feb 20, 2024 |
|
148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath
|
Feb 15, 2024 |
|
147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins
|
Feb 08, 2024 |
|
146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney
|
Feb 01, 2024 |
|
145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present
|
Jan 25, 2024 |
|
144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile
|
Jan 18, 2024 |
|
When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY]
|
Dec 07, 2023 |
|
Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY]
|
Nov 30, 2023 |
|
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY]
|
Nov 22, 2023 |
|
143: Season 8 Finale | International Listeners, Frantic Behind-the-Scenes Work, and Surprising Popular Episodes w/ Alyssa Nutile
|
Nov 16, 2023 |
|
142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-Atkins
|
Nov 09, 2023 |
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141: How Our Faith + Spirituality Can Be Impacted by Our Experiences with Our Medically Complex Children (+ Visa Versa) w/ Ali, Bethany, Melissa, and Rachel
|
Nov 02, 2023 |
|
140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis
|
Oct 26, 2023 |
|
139: In-Home Nursing | The Good, the Bad, + the Ugly w/ Caitlin Castro, Nicole Dennis + Brooke Teremi
|
Oct 19, 2023 |
|
138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD
|
Oct 12, 2023 |
|
137: Life After Child Loss | What is Grief, How Does It Show Up, and What Can We Do About It? w/ Cole Imperi + Leah Deason
|
Oct 05, 2023 |
|
136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger
|
Sep 28, 2023 |
|
135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSW
|
Sep 21, 2023 |
|
134: Child Loss 101 | What to Expect, Decisions You Can (and should) Make Now + How to Make The End Of Your Child’s Life As Beautiful As They Are
|
Sep 14, 2023 |
|
133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having
|
Sep 07, 2023 |
|
132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFT
|
Aug 31, 2023 |
|
131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT
|
Aug 24, 2023 |
|
130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFT
|
Aug 17, 2023 |
|
129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons
|
Aug 10, 2023 |
|
128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz
|
Aug 03, 2023 |
|
Health Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast)
|
Jul 27, 2023 |
|
To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast)
|
Jul 20, 2023 |
|
The Sibling Perspective w/ Katherine Acton (Rebroadcast)
|
Jul 13, 2023 |
|
Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast)
|
Jul 06, 2023 |
|
The Parable of the Pain Scale | The Ways Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley (Rebroadcast)
|
Jun 29, 2023 |
|
The Story of Claire (Rebroadcast)
|
Jun 22, 2023 |
|
Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests (Rebroadcast)
|
Jun 15, 2023 |
|
It’s All My Fault (Rebroadcast)
|
Jun 08, 2023 |
|
Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast)
|
Jun 01, 2023 |
|
Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN (Rebroadcast)
|
May 25, 2023 |
|
127: Season 7 Finale + 3 Year Anniversary | How This Podcast Has Changed My Life w/ Juston Cheney
|
May 18, 2023 |
|
126: Therapies | When to Scale Back and How to Do So w/ Andrea Loveday-Brown and Larkin O’Leary
|
May 11, 2023 |
|
125: Tips and Tricks for Traveling with Disabled Kids w/ Alyssa Nutile
|
May 04, 2023 |
|
124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End
|
Apr 27, 2023 |
|
123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer (VOICEOVER)
|
Apr 20, 2023 |
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123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer
|
Apr 20, 2023 |
|
122: 5 (Surprising) Things Parents Want Special Ed. Professionals to Know w/ Tiffany Goodchild
|
Apr 13, 2023 |
|
121: When Strangers “Just Ask” + How to Handle That w/ Disabled Author James Catchpole
|
Apr 06, 2023 |
|
120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation
|
Mar 30, 2023 |
|
119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD
|
Mar 23, 2023 |
|
118: Medical Organization Hacks | Supplies + Info + Appointment Scheduling
|
Mar 16, 2023 |
|
117: Trauma-versaries + Other Triggers to Our Medical Trauma w/ Hailey Adkisson and Madhura Katre
|
Mar 09, 2023 |
|
116: Kinda Obsessed | Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors
|
Feb 28, 2023 |
|
115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going
|
Feb 23, 2023 |
|
114: Grieving Our Children’s Intellectual Disabilities + Facing Our Internalized Ableism w/ Marci Dunning
|
Feb 16, 2023 |
|
113: Blenderized Diets for Tubies | The Life-changing Health Benefits and How to Get Started w/ Cassie Krings and Hilarie Dreyer, RD
|
Feb 09, 2023 |
|
112: Abby’s Story | Skeletal Dysplasia, a Prenatal Diagnosis with Grim Hopes of Survival, + Ditching the Bubble Wrap
|
Feb 02, 2023 |
|
111: Season 7 Kickoff
|
Jan 26, 2023 |
|
110: When Your Child is Inpatient at the Hospital During Holidays w/ Amanda Griffith-Atkins
|
Dec 15, 2022 |
|
109: Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins
|
Dec 08, 2022 |
|
108: The Holidays + The Ways They Can be Tough for Disability Parents w/ Amanda Griffith-Atkins
|
Nov 17, 2022 |
|
107: Season 6 Finale episode w/ Brittany
|
Nov 10, 2022 |
|
106: Respecting and Honoring Our Nonspeaking Children w/ Brianna Christian
|
Nov 03, 2022 |
|
105: Brianna’s Story | Regression, Finding Purpose, and a Nurse-Turned-Medical-Mom
|
Oct 27, 2022 |
|
104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones
|
Oct 20, 2022 |
|
103: Instilling Body Image Resilience in Children with Disabilities w/ Dr. Lexie Kite
|
Oct 13, 2022 |
|
102: Becoming a Single Medical Mom w/ Tiffany Pasillas
|
Oct 06, 2022 |
|
101: Tiffany’s Story | T18/Edward Syndrome + Advocating for Her Daughter’s Right to Live
|
Sep 29, 2022 |
|
100: Raising Awareness | Disabled People (and Their Parents) Do Not Owe Society Anything
|
Sep 22, 2022 |
|
99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests
|
Sep 15, 2022 |
|
98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer
|
Sep 08, 2022 |
|
97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance
|
Sep 01, 2022 |
|
96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies
|
Aug 25, 2022 |
|
95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley
|
Aug 18, 2022 |
|
94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham
|
Aug 11, 2022 |
|
93: Chelsea’s Story | Airway Issues, a Dirty Baby, and Making Scary Medical Decisions
|
Aug 04, 2022 |
|
92: Season 6 Kickoff
|
Jul 28, 2022 |
|
Jess’ Story | A Twinless Twin and Something to Prove (Rebroadcast)
|
Jul 21, 2022 |
|
The NICU Experience | An Initiation into Medically-Complex Parenting (rebroadcast)
|
Jul 14, 2022 |
|
Effie’s Story | Siblings, Italy, and a Next-Level Laugh (rebroadcast)
|
Jul 07, 2022 |
|
What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD (Rebroadcast)
|
Jun 30, 2022 |
|
Confessions of a Medical Mama w/ Anna Brown (Rebroadcast)
|
Jun 23, 2022 |
|
Medical Equipment| The Ultimate Hate/Love Relationship + How to Vacation With It All w/ Falesha Johnson (Rebroadcast)
|
Jun 16, 2022 |
|
It’s All My Fault (Rebroadcast)
|
Jun 09, 2022 |
|
It’s OK to be Angry w/ Orley Bills, LCSW (Rebroadcast)
|
Jun 02, 2022 |
|
When Your Mommy-Gut Is Alarming and The Doctors Won’t Listen w/ Tameka Diaz (Rebroadcast)
|
May 26, 2022 |
|
91: Season 5 Finale w/ Special Guest Brittany Steitz
|
May 19, 2022 |
|
90: Living with Sleep Deprivation w/ Jill Arneson
|
May 12, 2022 |
|
89: Gaslit by Others and Ourselves
|
May 05, 2022 |
|
88: Numbing Out When Things Are Tough w/ Anna Smyth, MS, RYT
|
Apr 28, 2022 |
|
87: Depression, Anxiety, + PTSD in Medically-Complex Parenting w/ Karley Henderson
|
Apr 21, 2022 |
|
86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily
|
Apr 14, 2022 |
|
85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT
|
Apr 07, 2022 |
|
84: Grieving Our Child’s Medical Complexity w/ Carrie M. Holt
|
Mar 31, 2022 |
|
83: An Evolution of Faith w/ Kimberly Arnold, Part 2
|
Mar 24, 2022 |
|
83: An Evolution of Faith w/ Kim Arnold, Part 1
|
Mar 17, 2022 |
|
82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test
|
Mar 10, 2022 |
|
81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT
|
Mar 03, 2022 |
|
80: Celebrating Our Children + Our Growth w/ Lexie Emory, Roya Malaekeh, Analy Navarro, Heather Cox, and Rayel Lockhart
|
Feb 24, 2022 |
|
79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair
|
Feb 17, 2022 |
|
78: Wendy’s Story
|
Feb 10, 2022 |
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77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.”
|
Feb 03, 2022 |
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76: Medical Mom Soul-Searching w/ Moira Cleary, CPC
|
Jan 27, 2022 |
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75: My Journey as an Adoptive and Foster Medical-Mama w/ Sarah Yates
|
Jan 20, 2022 |
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74: Sarah’s Story
|
Jan 13, 2022 |
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73: Season 5 Kickoff
|
Jan 06, 2022 |
|
Announcement and Recommended Episode #7
|
Dec 30, 2021 |
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Announcement and Recommended Episode #6
|
Dec 23, 2021 |
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Announcement and Recommended Episode #5
|
Dec 16, 2021 |
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Announcement and Recommended Episode #4
|
Dec 09, 2021 |
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Announcement and Recommended Episode #3
|
Dec 02, 2021 |
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Announcement and Recommended Episode #2
|
Nov 25, 2021 |
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Announcement and Recommended Episode #1
|
Nov 18, 2021 |
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72: Season 4 Finale
|
Nov 11, 2021 |
|
71: Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN
|
Nov 04, 2021 |
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70: Accessibility and Ableism w/ Vanessa McLeod
|
Oct 28, 2021 |
|
69: Vanessa’s Story
|
Oct 21, 2021 |
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68: Dipping My Toes into Educational Advocacy
|
Oct 14, 2021 |
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67: What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD
|
Oct 07, 2021 |
|
66: Machine Dependency w/ Falesha Johnson
|
Sep 30, 2021 |
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65: The Story of Cali
|
Sep 23, 2021 |
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64: Improvement-triggered Grief
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Sep 16, 2021 |
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63: Medical Bills and Expenses w/ Gina Pola-Money
|
Sep 09, 2021 |
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62: Hospitalizations w/ Erica Ryan
|
Sep 02, 2021 |
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61: The Story of Westley
|
Aug 26, 2021 |
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60: Blindness
|
Aug 19, 2021 |
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59: Educational Advocacy + IEPs w/ Catherine Whitcher, M.Ed
|
Aug 12, 2021 |
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58: Medical Advocacy w/ Tameka Diaz
|
Aug 05, 2021 |
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57: The Story of Evely
|
Jul 29, 2021 |
|
56: Season 4 Kickoff
|
Jul 22, 2021 |
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55: Season 3 Finale
|
Jul 08, 2021 |
|
54: Disabled Adult Perspective w/Erica Stearns
|
Jul 01, 2021 |
|
53: Diagnosis Jealousy w/ Kara Ryska
|
Jun 24, 2021 |
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52: The Story of Levi
|
Jun 17, 2021 |
|
51: Isolation vs. Connection
|
Jun 10, 2021 |
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50: The Sibling Perspective w/ Katherine Acton
|
Jun 03, 2021 |
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49: The Story of Anna
|
May 27, 2021 |
|
48: Lifting the Curtain
|
May 20, 2021 |
|
47: Siblings w/ Katie Taylor, CCLS
|
May 13, 2021 |
|
46: Confessions of a Special-Needs Mama w/ Anna Brown
|
May 06, 2021 |
|
45: The Story of Emery
|
Apr 29, 2021 |
|
44: Inclusion in the Hearing Loss World
|
Apr 22, 2021 |
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43: Emotional Safety in Marriage w/ Dr. Matt Townsend
|
Apr 15, 2021 |
|
42: Friendship + Inclusion w/ Effie Parks
|
Apr 08, 2021 |
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41: The Story of Ford
|
Apr 01, 2021 |
|
40: Wendy + the Sibling Experience
|
Mar 25, 2021 |
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39: Inclusive Children’s Books w/ Macy Gilson, Megan DeJarnett, and Jessica Parham
|
Mar 18, 2021 |
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38: Social Media + SN Community w/ Jess Wolff
|
Mar 11, 2021 |
|
37: The Story of Lily
|
Mar 04, 2021 |
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36: Rare Disease Day 2021, The Parent-Perspective
|
Feb 28, 2021 |
|
35: Season 3 Kickoff
|
Feb 18, 2021 |
|
34: Season 2 Finale
|
Feb 04, 2021 |
|
33: It’s OK to be Angry, w/ Orley Bills, LCSW
|
Jan 28, 2021 |
|
32: Self-Care w/ Jessica Patay
|
Jan 21, 2021 |
|
31: The Story of Ryan
|
Jan 14, 2021 |
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30: You Are Exactly What Your Child Needs
|
Jan 07, 2021 |
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29: Resilient Mindset w/ Claudia Taboada
|
Dec 31, 2020 |
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28: Living with Grief w/ Anna Stanfield
|
Dec 24, 2020 |
|
27: The Story of Gilbert
|
Dec 17, 2020 |
|
26: The NICU Experience | An Initiation into Medically-Complex Parenting
|
Dec 10, 2020 |
|
25: EMDR Trauma Therapy w/ Rosey Schaefermeyer, LCSW
|
Dec 03, 2020 |
|
24: Disability Advocacy w/ Jenny McLelland
|
Nov 26, 2020 |
|
23: The Story of James
|
Nov 19, 2020 |
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22: It’s All My Fault
|
Nov 12, 2020 |
|
21: Giving Back w/ Tara Docekal
|
Nov 05, 2020 |
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20: Anticipatory Grief w/ Katie
|
Oct 29, 2020 |
|
19: The Story of Claire
|
Oct 22, 2020 |
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18: Season 2 Kickoff
|
Oct 15, 2020 |
|
17: Season 1 Finale
|
Sep 24, 2020 |
|
16: Strategies to Support Selective Eaters w/ Kimberly Hirte, SLP
|
Sep 17, 2020 |
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15: Communicating w/ a Nonverbal Child
|
Sep 10, 2020 |
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14: The Story of Miller
|
Sep 03, 2020 |
|
13: Feeding Tube Adventures
|
Aug 27, 2020 |
|
12: 3 Fun Ways to Facilitate Language Development w/ Hearing Specialist Angie
|
Aug 20, 2020 |
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11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
|
Aug 13, 2020 |
|
10: The Story of Sloan
|
Aug 06, 2020 |
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9: 3 Tips for Taking Charge of Your Therapy and Medical Team
|
Jul 30, 2020 |
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8: Advocating Using the FIG Method w/ Dr. Saperstein
|
Jul 23, 2020 |
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7: Educating Others About Your Child’s Differences w/ Emily Young
|
Jul 16, 2020 |
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6: The Story of Nora
|
Jul 09, 2020 |
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5: A List of Diagnoses
|
Jul 02, 2020 |
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4: You Are Not Your Child’s Therapist w/ Developmental Specialist Lisa Rawley
|
Jun 25, 2020 |
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3: Quality of Life w/ Alyssa Reidhead
|
Jun 18, 2020 |
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2: The Story of William
|
Jun 11, 2020 |
|
1: Season 1 Kick-Off
|
Jun 04, 2020 |
|
Preface: Kimball’s Origin Story and a Little More About TRL
|
May 29, 2020 |
|
Trailer: Sneak Peek into The Rare Life
|
May 07, 2020 |