I noticed the “Parenting” category of my site was particularly low on posts so I thought I’d do a week of tips for parents of kids with muscular dystrophy. Keep in mind that these are coming from the point of view of a me, someone who grew up with muscular dystrophy, not a parent. But I get a lot of emails from parents so hopefully this will help some of you parents visiting the site.
Tip #1 is this: Let’s all be normal about it
Kids want to fit in. Even as adults we all just want to consider ourselves part of the crowd. That’s not to say we aren’t proud of what makes us an individuals, but there’s that feeling of “sticking out” that we all (well most of us) want to avoid.
Personally I never felt like it was necessary to make a big deal out of the fact that I had muscular dystrophy. I didn’t tell any of my friends exactly what was going on with me until college. Although I’d had surgery on my heel chords and had a labored-looking walk, I didn’t specify to anyone that I had muscular dystrophy. Of course I wasn’t using a wheelchair or assistive device at the time so my disability wasn’t exactly as visible as it could have been.
In hindsight, one of the things that I appreciated about how my parents treated my disorder was that they privately mentioned things to the people that needed to know, and that was it. This includes teachers, principals, guidance counselors, priests, and anyone else in my immediate network of authority figures. When it came time to address a need — like being in an adaptive gym class, for example — the issue was discussed, the changes were made, and that was it.
But also, in reflection, I wish I had been more open about it than I was. I feared that things wouldn’t be normal if everyone knew. As I started sharing my diagnosis with people, however, I realized that keeping things normal was really up to me. If I didn’t make a big deal out of it, then nobody else did. This rings true even today as I use an electric wheelchair.
I think it possible accomplish both things — being open about having muscular dystrophy and also not making a big deal out of it.
So the thing I would tell parents here is that unless the situation warrants it, don’t make a big deal out of the fact that your kid has muscular dystrophy. Let your kid be better known for his/her talents and abilities than his/her disorder.