For a lot of disability parents, the behavioral side of our child’s diagnosis often gets judged the fastest and is understood the least. It’s also another part that can make us feel like we’re failing, because it’s so hard to “control.”

In this episode, Alyssa talks with Annie and Katie about behavioral disability and nervous system dysregulation in rare disease parenting. We cover what it looks like when behaviors don’t fade with age, how it changes when kids get older and stronger, and what it’s like to live in constant hypervigilance especially when there are siblings in the mix.

We also dig into isolation, exclusion (even in disability spaces), and why access to services can depend on having the “right” labels beyond a rare disease diagnosis. If you’ve ever felt like this part of your child’s disability is the hardest to explain and the heaviest to carry, this episode is for you.

And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.

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Listen to Ep 148: Katie’s Story.

Listen to Ep 197: Difficulty with Disability ParentFriendships.

Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.

Listen to Ep 151: Fostering Friendships with OtherDisability Parents.

Follow Annie on Instagram @dranniekuo!

Follow Katie on Instagram @averyrareadventure!

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