Years of Hard Work Are Behind My Sons’ Good Start at School

School and Duchenne muscular dystrophy (DMD) don’t always go hand in hand. But of course, they can — and when they do, it’s beautiful. But even then, I doubt it’s come about without an extraordinary amount of work from the parents, the school district, or both.

This school year, which started in August for us in Nebraska, has begun more smoothly and successfully than any other year since our oldest son, now a junior in high school, began kindergarten. Recently, all three of our boys with DMD had their annual individualized education plan (IEP) meetings, and they were fantastic! I’m crediting our years of hard work for at least some of that achievement. The boys have done a lot of work, too.

My husband, Jason, and I have been visible advocates for each of our sons every school year. It’s felt repetitive and, at times, like we were beating our heads against the wall. But we did all the things that were recommended to us by other parents and agencies, like Parent Project Muscular Dystrophy.

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When Max, Rowen, and Charlie were little, in early elementary grades, we visited their classrooms. We explained that a young child would understand what was going on with the boys’ “special muscles” and why ours sometimes used a stroller or a scooter.

We talked about ways the kids could aid the boys by keeping the floor free from clutter and helping them carry things like library books. We let them ask questions; inevitably, a child would ask if the disease was contagious.

When the boys were old enough to realize it wasn’t cool for Mom and Dad to be at school, we did our best to encourage them to advocate for themselves. We started communicating with teachers even more via email and text, and IEP meetings became longer and more intense as we tried to cover all our bases. When medical changes occurred, like when Rowen broke his leg and stopped walking, we were sure to inform and plan with the schools.

We treated the teachers with drinks and snacks and tried our best to be grateful for them. This past year, I made up one-page information sheets about the boys to share with their teachers. I must have said a million times over the years that my children were blessings and not burdens, and I only ever wanted them to feel like a blessing.

It takes much work, and doing it three times a year can feel like it’s all I do. Sometimes it felt like I was working harder to ensure their needs were being met at school than advocating for a cure or managing the medical side of their lives.

I left IEP meetings crying more than once. Especially when the boys were younger, I wasn’t prepared to talk for an hour about everything they couldn’t do. Or maybe I just was calloused over enough and was still sensitive. Either way, it was heartbreaking. Fortunately, our IEP meetings have become more positive, with teachers talking about our sons’ strengths, too.

When my oldest son, Max, struggled with anxiety, we had extra meetings that were full of emotion. I was exhausted afterward, and my eyes were irritated and red for days from excessive tears. Then, when Max transitioned to a new school and struggled with anxiety, I’d get texts and phone calls from him begging me to pick him up.

So we’ve had hard years and complicated situations, and we’ve worked with some challenging personalities. But I’m celebrating that we’re off to our best start yet. It feels like all our years of hard work are paying off. I realize that many of you work just as hard, if not harder. And some schools are more challenging. Your reward may never be a great school year, but it’ll be your child’s success!

When the boys excel, it’s even better than the school following the IEP. No, they may not excel with straight A’s, perfect attendance, or high test scores. But they have typical middle and high school experiences. They’re involved with extracurriculars. We’re starting to believe they might go to college and have careers.

Please find this encouraging. Keep at it.

Be the advocate, send too many emails, be present, and keep working at it. Because when you have a good year like the one we’re currently experiencing, even if it lasts only a semester, it’s good to have another reason to celebrate. It’ll fuel us for the years yet to come.

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.