The Seat You Find Yourself In: Being New to Special Needs Parenting

by Nikki Stusick

Several months ago I rode the Amtrak from Chicago to Michigan with just my son, Theo. I packed his light stroller and we took the Brown Line L Train to Union Station. We were so last minute that the conductor directed us to a different car where she must have known there would be a first row seat with lots of room for our stroller.

About fifteen minutes into the ride, once I caught my breath, I noticed our seat had a handicap symbol above it. I looked at the vacant front row seat across the aisle; it had no such symbol. I guess we could have moved all of our stuff across the aisle, but I knew we were the first stop, with no new passengers getting on.

There we were on the “handicap” side. I couldn’t help but think the universe was trying to give me a sign. Even in the option of two exact seats, I’d find myself in the one with the handicap sign. Being the neurotic Midwesterner I am, I thought, “Okay, if the conductor comes by, sees me in this seat, I’ll say my son has special needs.” As the words played in my head, I could feel tears. It wasn’t the first time I had thought it, but in the moment it felt like the first time I was accepting it enough to say it aloud.

I’m convinced there’s a time when you don’t even think about it, but I’m also convinced I have not arrived at that time. Months later, I still don’t know how to juggle the label. It’s hard to reconcile, this feeling of being intimidated by the label, but simultaneously feeling unsettled that I feel intimidated. I hate to feel such a bias. It’s obvious that being differently-abled is something that is felt continually, especially publicly.

I want Theo growing up feeling empowered by what makes him unique, with the imprint from his parents (namely his off-the-rails mom) that he is incredible and not reduced to a label. Advocating for all of this in the short number of months since he was born — the list is unimaginably longer and wider than I could have imagined.

I see a desperate need to unlearn biases, to help the world see “different” differently, and to not overthink the seat I am in. I have so much hope; there are so many people already doing this work. I connected with another special needs mom (see, I am using it!) who said this community — this special needs community — has her “favorite people on Earth.” I love that. I’m holding on to it, leaning into it to gain steam. I am starting with my own heart and my inspiration is the small little face with the brightest and biggest right dimple that I get to hold in my arms every day.

Author: Nikki Stusick • Date: 4/10/2018

About the Author

Nikki Stusick is the proud mom to Theo, a unique and brave one-year-old battling a rare genetic disease called TBCK which causes epilepsy, CVI, hypothyroidism, and severe hypotonia. She chronicles her reflections at @Theos_Village on Instagram and is inspired by the story-sharing of Complex Child and the many brilliant parents and caregivers behind it all.

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