“Normal” isn’t exactly a word that describes anyone with SMA. We do things differently than most people, have different challenges, and live unabashedly abnormal lives. (Just look at my diarrhea and disability column from last week.) Nevertheless, there is no reason why those of us with SMA and other disabilities shouldn’t have the same opportunities as everyone else.
In particular, I believe everyone with SMA should have the chance to go to school and experience equal education opportunities. I’ve come across parents who are apprehensive about sending their kids with SMA to either public or private school. Between health risks, social interaction concerns, and barriers to proper accommodations, some worry that traditional schooling would be too much to handle for themselves and their children.
Let me go ahead and say that these are all valid concerns. A parent’s No. 1 priority is to protect and nurture their children, and when you throw SMA into the equation, that task becomes all the more difficult. If you’re reading this and are anxious and skeptical about sending your kids to school, when they have numerous medical concerns and accommodation needs, know that this is understandable. But if you’ll bear with me for a few moments, I think you’ll find the idea a little less nerve-wracking.
School helps develop social skills
When I first entered the public school system, my preschool wanted to put me in the “special education” classroom. Later, a teacher wouldn’t have me as a student because of my disability. Those obstacles were there from the start, and my parents refused to put up with any of it. My mom fought to enroll me in a regular classroom with necessary accommodations, and we fought many similar battles as my education continued.
Were these fights worth the effort? Absolutely. Had I not been placed in a normal classroom setting, I wouldn’t have developed the social skills that I have today. I grew up as the only student in a wheelchair in my class, and it didn’t bother me. I had no problem relating to other kids and getting involved in extracurriculars, and even when I did have to miss school when I was sick or hospitalized, my teachers were always willing to work with me. I missed months of elementary school due to severe illnesses and a broken femur, but I still managed to complete each grade level. My guess is the school faculty was too afraid of incurring my mom’s wrath if they decided to hold me back.
Going to school helped me develop a strong work ethic
I wanted to write from a pretty early age. Beyond that, I always knew I would have to work harder than most people to achieve my goals. As evidenced by the special education class debacle, it was clear that there were people who wanted to treat me differently and give me special treatment because they didn’t think I could handle a normal education.
I rejected that notion with the utmost zeal, and I was willing to work harder to prove myself. Once I knew I wanted to write, I went all in. I read J.R.R. Tolkien and C.S. Lewis in middle school, took writing and film classes in high school, and entered every playwriting and fiction contest I could. Furthermore, the structure of school helped me hone my skills and explore unique opportunities.
Granted, I was still far from being a perfect student. My English and drama teachers loved me, but there were other subjects I couldn’t care less about. My college transcript looks like a roller coaster. My interest level in a course was a good indicator of how much effort I’d put into it. Roger Ebert said the same thing in his memoir “Life Itself,” so maybe it’s a writer thing.
School taught me to advocate for myself
In addition to classroom accommodations, my parents and I also had to fight school administrators over things like field trip and testing accommodations, and the elevator in my middle school that broke down regularly (that’s another column). Through these scenarios, I learned to be proactive and speak up for myself.
Today, I work full-time and have an active social life. I also write comics and host a pop-culture podcast. I attribute much of my current life to my education and the people I met throughout my years in school. Did SMA make things more difficult for me? Absolutely. And I’m grateful for that. If it hadn’t been for those challenges, I wouldn’t be as passionate and hardworking as I am today. I get that the thought of sending your child with SMA to school is daunting, but just know that it worked for me, and it has worked for many others in this community.
You can do it, and so can your child.
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.