Living on campus is new territory for one son with DMD

My past two columns highlighted significant life events: my daughter’s wedding and my return to the workforce. I’m keeping that theme going today as well, noting my oldest son’s move into his college dorm!

Having children leave to experience lives of their own, outside the home you’ve provided for the first 18 years of their life, is always cause for celebration. But it takes on multiple times that meaning when the child is living with Duchenne muscular dystrophy (DMD).

I have three sons with DMD: Max, 18, Rowen, 15, and Charlie, 13. Max is the one who recently moved into his dorm, where he’ll attend a small liberal arts college in our hometown. For the first time, he’s now spent multiple nights away from his dad, Jason, and me.

We were excited when Max decided he wanted to go to college. When he was diagnosed, the doctor told us that he’d need help with all of his daily activities as a teenager — and worse, that he’d only live into his early 20s. I didn’t imagine that his future would include college.

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I’m so glad that I was wrong, that the diagnosing doctor was wrong, and that anxiety lost this battle. Max is living on a college campus. It was only about a year ago that I realized he might have a chance for that to happen.

For years, I’ve followed pages on social media dedicated to “taking Duchenne to college.” I’ve read all the tips and seen all the pictures of young men with Duchenne in their dorm rooms. But when it came time to prepare Max — and Mom and Dad! — for his life on campus, I didn’t feel confident that I knew what I was doing.

But somehow, with perseverance and love, we’re doing it. We’re not perfect; we’re figuring things out daily right now. But I’m confident that by the time our youngest with Duchenne, Charlie, gets to his higher education, I’ll be able to write a book on “taking Duchenne to college.”

Until then, here are some things we have figured out (sort of):

Meetings

We’ve had many meetings with college officials. Max is their first student with Duchenne, and he’s our first son with Duchenne to go to college. I was open and honest from day one, acknowledging that I’d never prepared a full-time wheelchair user to go to college and that I might not know everything we needed right away.

Max, my husband, and I have met with college officials multiple times over the past few months. We’ve met with the dining hall staff, the special education center on campus, resident advisers, and others.

And I was right; I didn’t know everything. The door to Max’s room needed to be easier to unlock, and we wanted it remedied immediately because we had to be flexible those first few weeks. The college heard us and had a new door lock installed within days.

Personal care assistants

I’d yet to learn how we’d find personal care assistants (PCAs) for Max. Other parents had told me about setting up the schedule once we had PCAs in mind and knew the kind of care Max would need. But finding the right people seemed like mission impossible.

However, we started by talking with students and staff on campus and using social media. I’m still trying to figure out how we managed it, but we hired four PCAs — all males, which was Max’s preference.

The challenge has been preparing the PCAs before the first day of classes. Because Max is a first-year student, we know only a few people on campus, so we had to wait for classes to start to advertise the job. Once we found the PCAs we wanted, there was a two-week process for their background checks to clear through the state-funded agencies that would pay them.

My husband has been on campus daily to get Max up in the morning and back to bed at night. By next week, however, the PCAs will take over caregiving. We plan to hire PCAs for fall 2025 before he leaves for summer break to eliminate us being on campus so much.

We’re just barely getting started, and I know we have more to learn, but we’re doing it! I hope to share the knowledge we gain in future columns to help others do it, too.

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.