In this episode of Wheel With It, we talk about what it’s really like raising a child with a rare diagnosis, navigating special education, fighting insurance battles, and learning how to thrive instead of just survive.
We cover:
• What TBR1 is and how rare genetic disorders are diagnosed
• Early intervention and childhood apraxia of speech
• Navigating IEPs and special education services
• Medicaid waivers & state disability programs
• Insurance challenges families face
• The emotional isolation of parenting a child with disabilities
• Michelle’s THRIVE framework for parents
If you’re parenting a child with developmental delays, autism traits, intellectual disability, or navigating the IEP process — this conversation is for you.
💬 Comment below: What has advocacy looked like in your journey?
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#TBR1 #RareGeneticDisorder #SpecialEducation #IEP #MedicaidWaiver #DisabilityAdvocacy #ParentingWithDisabilities
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⏱️ YOUTUBE CHAPTERS
00:00 – Introduction
01:10 – What Is TBR1? (Rare Genetic Disorder Explained)
03:30 – How Rare Is TBR1?
05:00 – Early Signs & Speech Delays
07:20 – The Isolation Parents Don’t Talk About
09:40 – Fighting for Early Intervention
11:45 – Childhood Apraxia of Speech
13:20 – The THRIVE Framework
13:40 – T: Building the Right Team
15:00 – H: Help Systems (IEPs & Insurance)
16:45 – R: Relationships & Family Support
17:30 – I: Taking Care of Yourself
18:20 – V: Celebrating Small Wins
19:10 – E: Expect a Miracle
21:00 – Medicaid Waivers Explained
24:30 – Respite Care & State Resources
26:00 – Final Thoughts
Connect with Michelle:
specialeducationconcierge.com
michelleschoairy.com
Connect with Devon/the show:
https://linktr.ee/wheelwithitpod