How I realized I was doing too much for my sons with DMD

I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve been doing things for my three sons with Duchenne muscular dystrophy (DMD) that they can do themselves.

My oldest son, Max, 18, is a high school senior. As he prepares for college, there’s a lot of paperwork to do; his financial aid information and college and scholarship applications are all due soon. His school helps with the process, so he started some of the applications in class.

On the way home a couple weeks ago, Max was utterly frustrated that he couldn’t complete a form at school like other students appeared to be doing. He was sitting behind me in our van, so I couldn’t see his face, but after he vented his frustrations to me, I sat there quietly, contemplating what I could tell him. But there was nothing I could say except the truth.

I had to admit it was my fault.

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I have always done all the paperwork for Max. He was diagnosed with DMD when he was 4 years old, so of course, I was the one completing his medical forms and insurance information. But I never stopped doing it.

Honestly, I never thought twice about it. I’ve been doing it for so long and with such frequency that it’s second nature. It never occurred to me that I should have been teaching my sons how to do it themselves as they got older.

I was surprised at myself. I have often patted myself on the back for raising my sons to be advocates. But after deeper reflection, I began to see a pattern. I started helping them an appropriate amount when they were young, but I should have adapted as they grew up.

I always had the boys attend their individualized education program, or IEP, meetings at school, but how often did they lead the conversation? Other adults and I usually talked for them.

I always hoped all three of my sons with DMD — Max, Rowen, 15, and Charlie, 13 — would someday become adults, and that is coming to fruition. But even though I knew they’d have to advocate for themselves to maintain some level of independence, I forgot to teach them the information they’d need to know.

I was so busy doing everything I could to get them to adulthood that I don’t think I prepared any of us for what would happen once we got there. But now that Max is 18 and preparing for college, I realize my sons, my husband, and I have more work to do.

On the flip side, I did it differently with my oldest daughter, Lexi, 22, and my son Chance, 16, who does not have Duchenne. In high school, they were responsible for applications and communication with teachers. I didn’t do it for them. I knew they would leave for college and eventually have their own lives to manage. I should have done the same for all my children.

We can’t get Max ready overnight, but we’ve started making strides. I sat with Max and we worked through some applications together and discussed things he needed to know. I’m helping him compose some emails he needs to send about scholarships.

By the time school starts next fall, I want to have gone over the names and doses of his medications, the names of his doctors and specialists, and his clinic and pharmacy information. It’s a lot to learn, but we have a solid foundation and can get to where we need to be.

And we can start now with Max’s younger brothers. There are advantages to having three sons with DMD. We can work on the things we didn’t get right with Max and hopefully do better with the next two.

Note: Muscular Dystrophy 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 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.