Holiday Gift Ideas for Loved Ones With DMD

I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and patients can experience both muscle weakness and problems with muscle control in performing tasks and activities, so I have to find ways to match their interests with their abilities.

We’ve planned a ski trip to Winter Park, Colorado, over Christmas for all six of our children — a first for our family — including adaptive skiing for our three sons who have DMD. Because of this, we won’t do as much gift-giving this year, but they will have presents to open on Christmas morning.

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As part of the adaptive ski lessons, each boy will be assigned his own guide to take him down the mountain. They are signed up for two half-days of skiing. We’ve never tried adaptive sports with the boys before, so we don’t really know what to expect. But we are excited to try it.

The boys have their own gift ideas

Max, my oldest son with Duchenne, is 16 and a sophomore in high school. He spends his free time playing video games, watching Marvel movies, and building Legos. His Christmas wish list includes Lego sets, books, and action figures.

I love that Max can still build with Legos. His 12-year-old brother Rowen doesn’t have the hand strength anymore to play with the Lego pieces. Max got his first Lego set when he was 5 for participating in an MRI-imaging study, and he has enjoyed playing with them ever since. He is also able to sit at a table or desk for an hour or more at a time, but will take breaks as needed. We hang his Lego models from his bedroom ceiling.

I think books are a great gift idea for children with Duchenne, and Max and his brothers enjoy reading encyclopedia-style ones about Marvel characters. These books can be heavy, and I sometimes have to carry them to a table or other space for them, but once they are in place, the boys can turn the pages and enjoy them. Online books are also a great option because they aren’t as heavy.

Rowen is on the autism spectrum and has particular interests. Before he was diagnosed with high-functioning autism spectrum disorder, we exposed him to all the same toys, programming, and experiences as our other children, but his interests were always limited and specific. When he was a toddler, he collected Smurf figures. Now he is into wrestling and American Ninja Warrior.

Years ago, it bothered me that he didn’t ask for as many gifts, and often ended up getting fewer things than his siblings. One year, the only thing he asked for was American Ninja Warrior bedsheets, but on Christmas morning, he was the happiest of all the children. He didn’t even pay much attention to what his siblings opened. Now, I enjoy buying for him because he loves the one or two unique things I find.

Rowen also enjoys sitting at the table and stacking cups, which he still has the arm strength to do. He likes to time himself, so I found a cup-stacking game with better quality cups that I think he will enjoy.

I think it’s a good idea for any parent who has a child with Duchenne on the autism spectrum to make the effort to learn what his specific interests are, and find a gift that fits them.

My youngest son, Charlie, 10, is a joyful guy who is easy to please. Charlie isn’t very limited by Duchenne yet, but he had a hard time thinking of anything he wanted for Christmas other than wireless earbuds. All of his siblings have a set of their own, so I’ll get him a pair, too. With six kids in the house all listening to their own things, it can get kind of loud, so wireless headphones keep me from having to hear everything they’re hearing. I think I need for them to have headphones as much as they do.

Gift ideas we can all enjoy

Gaming gifts are popular at my house. I particularly love the Playstation game system, because the kids can connect to other users and talk with them through headsets. This has been a good way for my boys to connect with school friends without having to figure out how to get their wheelchairs into their friend’s houses or other inaccessible areas. And they are also able to connect with others who have Duchenne and play games with them.

Card games and board games are also popular here because they let us all do an activity together as a family. If one of the boys with DMD has a hard time reaching for cards or moving game pieces, we will play as teams. Game nights are great fun.

I’m not giving gift certificates this year, but I have given them in the past, particularly for the movie theater. My three sons with DMD are all looking forward to the new Spider-Man movie coming out next week. It’s something they enjoy, and I like going with them. The gift of time together with them can be the best present!

I wish everyone a a happy holiday season, full of laughter and love.

I hope my ideas are helpful. If you have more ideas, please share in the comments below.

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