a ramp is made up of school supplies, at the top of the ramp is a child in a wheelchair in front of a school desk and holding a pencil

Extra Assistance at School

I was talking to a mom who has a teen with SMA. They were asking me for advice on what kind of accommodations they should be asking for in school.  My first suggestion was a second set of textbooks to keep at home. This was a huge help for me when I was in high school. I was still walking and trying to carry heavy textbooks was exhausting.

Times have changed

I’m sure the younger readers of this article are laughing. The mom told me that students these days no longer use textbooks. Everything is on a smart device like an iPad. Times have changed in the almost 30 years since I was in high school.

I graduated high school in 1995. The Americans with Disabilities Act was passed in 1990. Schools were trying to play catch up so that they were compliant with this new law. 32 years later I’m sure schools are much better than when I was walking the halls of my high school. That said, there is still some advice that can be given by this middle aged guy.

Make a list of the accommodations you need

Making lists of what accommodations you or your child will need will help you navigate this process.

Teens, start advocating for yourself now

Advocating for yourself is a lifelong skill. So if you are a young adult teen start now. If you are a parent reading this, sit with your child and help them be prepared. Teach them how to advocate. Go with them to a meeting at the school. Encourage them to take the lead, but be there to pick up the slack.

Reduce the physical challenges

Something that I used in school was building my schedule so that it would provide me with extra down time during the day so that I could physically keep up. I worked with my guidance counselor and we would rework my daily schedule so that I didn’t have to walk far in between classes. Also we scheduled my lunch and study hall so that it could give my body some down time during the day that best suited me. When you are physically exhausted it’s harder to concentrate and succeed.

I was still able to write by myself back then. However I had issues with my hands cramping during the day. My teachers would prepare a set of notes for each class for me. This was a huge help.

Ask for extra time for exams

I also received extra time for exams. I didn’t always need it. But knowing that it was available if I needed it helped give me the confidence that I wouldn’t have to rush if I experienced issues with my hands.

Take advantage of technology

Something that is available to students now is modern technology. Attending school virtually should be an easy option since the pandemic. On days where it’s not possible to physically attend school for the day shouldn’t mean that you need to fall behind. Fight to have that option ready and available if you need it.

Unfortunately living with SMA can cause roadblocks in our daily lives. However with some creativity and thinking out of the box you can overcome those physical barriers so that you can succeed. Don’t let this disease get in your way. Most importantly, never give up!

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