Accommodations and friends made my school days ordinary

Someone recently suggested that I write about my school days and what it was like growing up with spinal muscular atrophy (SMA). My initial reaction was to scrunch up my face and shrug, because my experience in school felt very normal to me, nothing especially remarkable or strange about it.

But maybe that ordinary feeling is exactly what makes the story worth telling.

I went to a small Christian school through sixth grade and then transferred to public school for middle and high school. I was in regular classes (advanced classes, actually), participated in typical clubs and activities, and had able-bodied friends. In fact, except for the one year my brother (who also has SMA) and I were in the same building, I was the only person in a wheelchair in the whole school.

I didn’t have an individualized education program (IEP) until high school, when I needed assistance once a day in the restroom. I remember that the school custodian and the special education teacher’s assistant discreetly met me in the girls restroom every day right before lunch, locked the door for privacy, and helped me take care of business.

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Special accommodations included providing a desk that I could park at in each of my classrooms. Those desks followed me around to different corners of different rooms, semester after semester, and I can still remember the screeching of aluminum legs as they were dragged across the tile floors.

My IEP specified that I could simply mark the bubbles on Scantron answer sheets with an X, instead of filling the bubble in completely. That’s because it was difficult for me to bear down with my pencil to make it dark enough for the machine to detect. I assume some wonderful teacher’s assistant went back through and finished the task for me before scanning the sheet.

I’m not sure if the IEP actually determined that I should be released from each class two minutes early, but all my teachers allowed it. And it was a good thing, too, because the most dangerous challenge I faced on campus was navigating jam-packed hallways of rushing, spatially unaware teenagers lugging 30-pound book bags on their backs like pack mules, book bags right at face-level with me.

Otherwise, I did not receive any official special treatment. My friends, bless them all, did a lot of the caregiving assistance for me throughout the day. They carried my lunch tray, switched out my books in my locker, opened doors, and did anything else that required muscles I couldn’t activate. I didn’t realize then how significant that exchange was: I was learning to advocate for myself and clearly express my needs, while they were learning to be aware, sensitive, and compassionate human beings, which they remain to this day.

Looking back, I can see that my school days felt normal not because my disability was hidden or ignored, but because accommodations, quiet acts of help, and genuine friendship made room for me to participate more fully. I hope that other students with SMA can have a kind of ordinary school experience similar to mine, one not defined by inability and exclusion, but by belonging and growing as a student first.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.