Making modifications to curb the exhaustion of high school

Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease progression to how their bodies handle the changes, plus how each deals with the stress and heartache of progressive deterioration of their muscles and abilities.

Sometimes, however, I think of them as one and make plans as if they’re the same. I realized this week that I was doing that to Rowen. He started high school in mid-August, and I prepared for it as I did for his older brother Max, who’s a senior.

Max started high school as a full-time student. He went every day, all day, and didn’t need a break. He had the energy to try out for a play and attend football games in his first semester.

Rowen, however, is exhausted. He comes home from school and asks us to get him out of his power wheelchair and put him on the couch. He stays there until bedtime, declining to go to the table for dinner. He eats on the couch.

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My boy who loved the outdoors, who’d go on two walks of several miles every spring and summer day, hasn’t been on a walk on a weekday since the school year started. He’s yet to have the energy to attend home football games for the team his brother Chance, 16, is on. When Chance had an away game two weeks ago, Rowen had to go because we didn’t have anyone to stay with him.

He cried. He was as exhausted as I’d ever seen him.

He’d been dealing with congestion, and I told myself he was tired because his body was fighting a cold. But we’re finishing our fifth week of school, and everything has stayed the same. As much as I hoped he’d acclimate to his new schedule, he hasn’t. We had a restful weekend, but when it was time to put him in bed on Sunday night, he cried again — not because he was exhausted, but in anticipation of it.

Necessary changes

My heart broke a little that Sunday night. I knew I’d pushed Rowen too hard for too many weeks. As we got him to bed, I promised him we’d modify his school schedule.

The following day, I did as I’d promised and sent a text to his case manager, explaining that Rowen was too exhausted to go anywhere or do anything. I suggested he drop his last-period class, as it’s a course he can take another year. That would let him go home early.

I credit the case manager because she ran with it to ensure the change happened as soon as possible. We have an individualized education program meeting today, during the time of the class he’ll be dropping. We’ll have a short session to make the modification, with the ability to modify more until we find the right balance. Afterward, Rowen will come home early with me.

Admittedly, I’ve been disappointed in myself. Rowen had needed modifications to his schedule in elementary school and the beginning of middle school, but once he started using his power wheelchair full time, he didn’t need a reduced schedule. He conserved energy by using the chair and not trying to walk. That let him stay at school all day and enjoy his time at home.

I should’ve realized the transition to high school was enough that he’d need added support, especially since his new school is much bigger, with longer class periods.

Life with DMD is always full steam ahead, however. I’ve learned there’s no use wasting time on the “I should haves.” Instead, we make decisions and changes and move forward.

Here’s hoping the weeks ahead are full of days when Rowen has the energy to enjoy life outside high school walls.

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.