As My Sons Head Back to School, I’m Focusing on the Positives

It’s August, and here in Nebraska, that marks the start of a new school year. As preparations were underway at our house, a freshly sharpened No. 2 pencil rolled across the kitchen table. My oldest son, Max, who lives with Duchenne muscular dystrophy (DMD), noticed it and remarked that a new pencil was satisfying. I had to agree. It represents a fresh start.

That seconds-long conversation got me thinking about my feelings toward the beginning of the school year.

I’ve panicked a handful of times during summer at the thought of my kids returning to school. It’s partly because I tend to get overwhelmed by the preparation involved in getting my three sons with DMD ready for school. In addition to buying new supplies and clothes, I must prepare for IEP meetings, school tours, endless advocating, and more.

But it’s also because I sometimes cling to what I’ve experienced with the boys, rather than embrace what the future holds. It can be hard to think about the future or plan for the boys’ dreams because we don’t know what will happen. We don’t know if they’ll live long enough to reach their goals, if their bodies will be strong enough, or if they will have enough help. It’s hard to know how it’ll all work.

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I feel safer staying right where we are than I do moving forward. Fear and anxiety are along for the journey, but I don’t want them to be in the driver’s seat. Instead, I hope to shift my focus to better embrace the school year.

Finding the positives

Each of my three boys is facing unique challenges this year that will give me plenty of practice focusing on the positives. Of course, that doesn’t mean I will ignore the obstacles; to do so would make me a terrible advocate. But I plan to focus on gratitude when seeking solutions to each challenge.

Max is starting his junior year of high school. Unfortunately, he has seen disease progression in the past six months. But he’s still ambulatory within our home, so that is my first positive! However, he can no longer get up from a seated position, his arms are weaker, he no longer raises them above elbow level, and things feel heavier to him.

I could spend more than a few days mourning these changes. Instead, I’m going to be thankful that Max attended Muscular Dystrophy Association camp in June, because he talked with other guys his age about school and came home with ideas to use a new saddle bag-style backpack, a reacher, and a new water bottle holder. Those items will allow him similar levels of independence as he had a year ago. I’m also celebrating that he will take the ACT exam and that we may go on a college visit before the school year ends.

My son Rowen is 13 and in seventh grade. He goes to a private Catholic middle and high school. This year, the school will be operating through a substantial remodel. Rowen is on the autism spectrum and uses a power chair; both pose a challenge in a construction zone.

Rather than focusing on that, I’m going to practice gratitude for a school team working hard to meet his physical needs. On the days that feel like too much, I’ll remember that the changes to the school building will benefit Rowen more than any other student, as an elevator and several accessible bathrooms are being added.

My youngest son, Charlie, will start middle school this year. He has chosen a school none of our other children have attended. That is a considerable change. One good thing about having three sons with DMD has been that, by the time we got to Charlie, his teachers and other team members had an excellent working understanding of Duchenne. This year, our family and Duchenne will be new to the school.

There’s a lot going on with Charlie, but I’m focusing on the school’s ability to meet his academic needs in a way they previously weren’t met. And I’m thankful for the connections I’ve made on social media with other parents of kids with disabilities, as well as academic experts from all over the country, because they’ve given me the resources I need to advocate for Charlie in his new environment.

The start of a new year can be hectic, and I often feel emotional and stressed. Yet I’m ready for a fresh start, like a new and sharpened pencil. And to fully embrace and hold on to that good feeling, I plan to focus on the positives and practice gratitude amid any challenges we may face.

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.