I Was a Victim of Comfort

It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life, either. In my younger years, I didn’t have problems with fitting in. I was social and felt like every other kid. As time went on, however, my circumstances changed, and I fell into an overly introverted trap.

From kindergarten to third grade, I was at Highland Elementary School. As I look back on my life, those were the only years that actually felt normal. I was friends with most of the kids in my classes, and I participated in regular activities such as recess, lunch, after-school chess club, and even gym class. Not that I could actually do anything physical, but the teachers found ways to include me. I’m not sure how it came into existence, but I even had access to my own bathroom, which had the necessary accommodations. I was right at home.

My spinal fusion surgery occurred at the end of third grade, and while it has worked wonders for my long-term health, there were immediate complications that precipitated me switching schools. I had to relearn how to swallow and had issues related to breathing. As it turned out, this move was unnecessary, but the powers that be convinced my family to do it. We weren’t in favor of it, but what’s done is done.

Ensworth Elementary School — where I spent grades four and five — was more accommodating to students with special needs. On the surface, this seems like a positive change, but in hindsight, it launched me down a path of reclusion that I still have yet to fully correct to this day.

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The school’s “necessary accommodations” came in the form of the life skills room, which is a place where students with special needs receive unique teaching and support. It’s a fantastic program, but I didn’t fit in. I was involved in life skills for nine years in three schools, and throughout all that time, I was literally the only person who was strictly physically disabled. I’d say probably 90 percent of the life skills students had autism or cerebral palsy.

It’s the square peg, round hole syndrome. Since I represent a demographic of one person, the school lumped me into a place designed for others. The irony of it all is that I grew to take great comfort in the life skills room. I’m an introvert, so having isolation from my peers was welcomed. This trend progressed, and by the time high school arrived, I was a total recluse.

I don’t want to give the impression that my experience with life skills was all bad. In fact, I made friends with many staff members over the years. I was actually treated like part of the staff. However, because of this program, my once-thriving social life with my peers dried up. I think it’s worth pointing out that, sadly, people undoubtedly pinned me with a certain stigma attached to the life skills programs.

If I could go back, I wouldn’t avoid life skills altogether, because I couldn’t. But I would search for more middle ground. I would have at least eaten lunch somewhere else and tried to be more social overall. If you have SMA, don’t settle for less than you deserve. If you’re a parent of an SMA child, advocate for them, and fight for total inclusion.

Were you in an education program like the one I described? What was your experience? Share in the SMA forums!

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.