How Trying Something New Helped Us Prepare for School

A neuropsychological evaluation greatly affected how we plan to educate our 13-year-old son this school year. As Rowen begins the eighth grade, I am proud of the services he will receive.

A neuropsychologist hasn’t always been a part of the care team for our three sons with Duchenne muscular dystrophy (DMD). When our boys were diagnosed here in Nebraska, we found a care team at a certified Duchenne care center hours away. We loved the team, but traveling for appointments took a toll. Finally, after a decade, thanks to a push from the COVID-19 pandemic shutdown, we transferred to a care center much closer to home, less than half a day of travel away. That alone made the change very welcome.

Additionally, the new medical team encourages all their patients to have a neuropsychological evaluation because of how the brain is affected by DMD. The assessment is encouraged because it can help parents and patients better prepare for school and other areas. For example, the assessment results helped me better understand what modifications and supports will guide my son’s success at school.

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School has never been easy for Rowen. He also has high-functioning autism spectrum disorder, and to a fault, I accepted that as both an answer and an excuse when things weren’t going well. Rowen, more than my other sons, gets fatigued at school. Classes at the end of the day were difficult because he was tired. Work designed to be done at home was nearly impossible.

Beyond that, math was hard for Rowen. We always had modifications in place; he didn’t have to do the entire assignment, he could have math fact sheets available to help him complete tasks more quickly, and in elementary school, he was often pulled out in a small group or for one-on-one work.

Once he got to middle school, it felt like he just quit trying. He didn’t like multistep problems and often would guess or write a zero for the answer. I thought it was autism. My theory was that he wasn’t motivated by good grades, and because he didn’t like math, his grade didn’t matter to him.

As I type this, I realize it sounds off. But, honestly, in the grand scheme of having three sons living with Duchenne, math didn’t make it to the top of my priority list.

The beauty of the neuropsychological evaluation was that we discovered that Rowen has a math learning disorder — dyscalculia, to be exact. Dyscalculia can manifest in many ways, such as losing track when counting, having trouble memorizing and recalling addition and multiplication facts, and struggling to remember math procedures and rules. People with this disorder tend to practice and learn math but quickly forget it, and inconsistent math memory causes frustration, avoidance, and anxiety.

Frustration. Avoidance. Trouble with math facts, procedures, and rules. Those are all things I could have said if you had explicitly asked about math and Rowen. He would have never been diagnosed if we hadn’t completed the evaluation. I’m so thankful.

We have changed our approach completely. Now, Rowen is in class with his peers three days a week, but the other two days, he meets via Zoom with a math expert and is working on relearning math in a new way and filling in the gaps that have developed over the years.

We are just getting started and have some hard work ahead of us, but I love that we know what we are dealing with. Now, we can set goals. I hope to help Rowen catch up with his peers. He will be in high school next year, and it would be nice if he were closer to his peers in math skills. I also want to set a goal to help us identify how Rowen learns math best so that he can take college entrance exams and begin college courses with the ability to know what modifications to request.

All three of my sons with DMD had an evaluation, and their results taught us new things about how each boy learns that we incorporated into their school plans this year. It was probably most beneficial for Rowen, but all of my sons benefited from the process. I would recommend this type of evaluation to all of my DMD parent friends.

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.