Familial Dysautonomia Caregiver Shocks the Inclusion Debate

My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter.

I know she’s raising her first-born child with familial dysautonomia (FD).

Problems related to this disorder first appear during infancy. Early signs and symptoms include:

  • poor muscle tone,
  • feeding difficulties,
  • poor growth,
  • lack of tears,
  • frequent lung infections, and
  • difficulty maintaining body temperature.

What does all this mean for my friend?

As a momma with a one-year-old child with familial dysautonomia, she has a bit more on her hands than most first-time mommas. And her screaming and crying on the phone didn’t need to be hammered out for the details. She’d been carrying a heavy weight as lead caregiver and stay-at-home mom since her son was born, and her distress is just something that happens when the reality of life gets to be too much.

“No one gets it!” she told me, through sobs.

No one knows how hard this is. How tiring it is for me to prove to the rest of the world—my family, my friends, and even to the asshole strangers who stare in the grocery stores, that my son is no different than any other child. He has a disorder—that’s all! My son can do and will do as other kids—just in his own way. Why is that so hard to understand?

My dear friend’s rant mirrors the voice of another momma, Susan Stillman of DC. She is also a parent of a child living with FD. Both women have an interesting perspective about parent advocacy and the idea of inclusion. When Susan’s child was younger, she was “very focused on inclusion and mainstreaming.” She just wanted him to fit in and enjoy what life had to offer. But there’s more to be understood about the dynamics of raising a disabled child and inclusion; Susan’s experience helps shed some light on the subject in her blog.

Read more here.

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