Fun summer activities that are still doable with Duchenne
How we've kept ourselves happily occupied over the years
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I often read social media posts from moms asking for safe and fun ideas for their children to enjoy during summer break. When my boys were younger, I worried about that as well.
I wanted my three sons with Duchenne muscular dystrophy (DMD) — Max, 18, Rowen, 15, and Charlie, 13 — to have the best summer vacations, much as their older, healthy siblings and cousins did. When the boys were small, however, I was afraid about damaging their muscles any faster than Duchenne was already doing. On the other hand, I didn’t want them to live in a bubble and miss out.
It was a delicate balance, but we figured it out. We developed the approach that if the boys wanted to try something, we’d figure out how to make it work.
The following are a few ideas that were part of our summer fun, both when the boys were younger and now that they’re teenagers. I’ve added a few things that have worked no matter how old they were. These activities have proven entertaining and have given us countless summer memories.
The early years
From the time the boys were old enough for organized activities outside the home, we tried many things, including karate and a cooking club, as well as these keepers:
Baseball: All three of our sons with DMD played baseball, starting the summer before kindergarten. It was a coach-pitch league, so players couldn’t strike out or get called out on the base paths, so their DMD wasn’t an issue. We always explained their disease to the coach; if they got tired, they got to rest. And the best part for my guys and the other kiddos was the snack and juice box after every game.
Bike riding: Max, Rowen, and Charlie all had bicycles. Max and Charlie both learned to ride without training wheels. Rowen always needed the training wheels, but it didn’t stop him from riding through the neighborhood with the rest of the kids.
Lego Club: Our local library offered Lego Club, a group that met a couple of times a month to build Legos together. The library provided everything, and it was something to do that got the guys out of the house for a couple of hours. They enjoyed it.
The tween and teen years
Movie dates: We went to lots of movies. I often suggest that family members and friends buy gift certificates as gifts for the boys or go with the boys to the movies. My mother-in-law is great about going to the movies, and Max has a friend who will drive our van so that he can have a break from us.
Walks: I should call them rides or strolls because you don’t have to literally walk to go on what I call a walk; wheels work great. We walk together every day when the weather is nice. Rowen often goes on several walks a day, putting several hundred miles on his powerchair every year.
Video games: I’m listing this source of entertainment even though it’s obvious for all of you with a tween or teen boy. Our boys have a gaming system and a TV that I don’t expect them to share. Lots of video games are a silver lining to dealing with DMD.
Fun for all ages
Water fun: Water is great for Max, Rowen, and Charlie. We used to buy passes to water parks yearly until Rowen entered his first powerchair. Then we purchased an above-ground pool, built a deck around it right off the house, and put in a lift. We swim a lot. We also like to have water fights, run or drive through the sprinklers, and sunbathe, especially Rowen and me.
Theater and music: I signed the boys up for summer theater and music lessons when they were little. It was new for all of us, but I thought the boys could do it. Little did I know that they’d love it and continue the lessons throughout high school — especially Max, who will major in theater in college.
Many more activities have also helped fill our summer days with laughter and memories. We let them go on rides at the county fair when they could; we love to attend professional baseball games, eat at restaurants featured on the show “Diners, Drive-ins, and Dives,” frequent food trucks and concession stands, hunt for the best hot wings, and go to a sports bar to watch big football games, to name a few.
If I could go back and tell myself one thing about what activities to try, it’d be to put no limits on the possibilities. Duchenne parents are resourceful people, and if it’s something to make our kids happy, we’ll find a way.
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.
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Comments
Patrick Moeschen
I love all of the summer activities that you have listed! As a grown up living with MD, I will add that many cities around the country also have great programs for all kinds of adaptive things such as scuba diving, sailing, fishing and boating. Keep making great memories!!