I still face typical teenage behavior, even if my sons use a wheelchair

Having DMD doesn't exempt my kids from adolescent tests of authority

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by Betty Vertin |

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My seven kids are my kids. That’s it. They all have strengths as well as weaknesses, challenges, and issues they must overcome. They also all have moments when they argue, talk back, get in trouble at school, and are genuine pains in the rear.

I cannot tell you how often someone sits behind us at church and is surprised to find that two of my three sons with Duchenne muscular dystrophy (DMD), sitting side by side in their power wheelchairs, are poking each other in the ribs and slapping each other’s hands away. People often react as if it’s just the cutest thing to see my teenager in a wheelchair acting like a teenager.

Too often, people see the wheelchair and make assumptions. As a mom who’s often confronted by people who find normal teenage behavior amusing, I think they see my sons as innocent little angels just because they use wheelchairs.

My boys are special. I know what they endure daily. Life with Duchenne is hard; they go through struggles that their healthy counterparts don’t. There are blood draws, painful procedures, and weakened bones from years of harsh medicine. They’re fragile, and their bones break easily.

Disease progression and deteriorating muscle strength make things they once did hard or even impossible to do as they age. They become increasingly dependent as their peers gain independence, and relationships with childhood friends dwindle.

Those are hard truths to navigate as a child and teenager. As a Catholic, I believe that the suffering they endure while on Earth prepares them for a life in heaven. But it doesn’t make them perfect in the meantime.

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Max, my oldest son with DMD, is 17 and has a potty mouth. And my 14-year-old son, Rowen, is rapidly developing a repertoire of cuss words, which he increasingly enjoys testing when he doesn’t think I’m listening.

So while planning this column, I asked my three sons with DMD what they do that people think they don’t because of their wheelchairs. Max first said that kids at school are always surprised when he cusses. He also mentioned telling dirty jokes, but I opted not to share one of those with you!

That’s not all, either. This semester, I got an email from the attendance office at Max’s high school, saying he’d have to serve a detention for skipping a class. I’ll admit it: That one surprised even me. After all, I drove him to school. I knew he’d never leave school and drive away in his power chair; his anxiety would’ve gotten the best of him. I was dumbfounded until he got home that day, when I could ask what he skipped and why.

It turns out he skipped T3. That’s a shortened class period everyone has four days a week to help them stay caught up on schoolwork. Students can request a teacher who might help them, and teachers can request students they want to help. An absence from T3 is considered unexcused.

In this instance, Max was asked to work on anatomy, which he was failing. But he hated the class and went to another one he liked more — in other words, he skipped class. Part of me was appalled because I’m his mom, but part of me thought it was awesome because it was such a normal thing for a kid to do. I want my boys to have those typical experiences, too!

The power wheelchairs used by my sons with DMD are simply mechanisms that allow them to move freely about the world without being hindered by their weak muscles or disease progression. The chairs aren’t free passes that let them navigate the teenage years free from typical adolescent behavior. The chairs certainly don’t stop the sass when they’re fed up with my parenting ways, and they don’t stop the attitude my sons express when they’ve had enough of each other.

My sons are different from their healthier peers in ways too numerous to list, but they’re not that different from other teenagers in most every way.

Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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