How Duchenne Helped My Son Learn Something New

The lights shone brightly, illuminating dancers dressed in red on the stage below. The rest of the theater was dark, save for an iPad glowing toward the back of the auditorium. I sat in the dark hall on a cold Saturday night in the small Nebraska town I call home.

The high school show choir was performing, but I was there as the proud mom of my oldest son, Max, 17. He was the one responsible for the glowing iPad, as he’s learning to run the lights and sound for the show choir’s performances.

As I’ve written previously, Max loves all things choir- and theater-related and has been very involved in these extracurricular activities at school. While he’s always preferred being a performer, he’s finding other ways to be involved as his Duchenne muscular dystrophy progresses.

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If Max’s life were a movie reel, the first 13-14 years would’ve been set to music, as he was always dancing. That passion is why I first signed him up for children’s theater. He’s a natural performer.

His freshman year of high school, Max wanted to audition for the show choir, so he started taking his power chair to school and using it during performances. Learning choreography in his chair and trying to modify the moves were very challenging, but he stuck it out for the entire week of auditions.

However, he did not make the show choir. I’m not sure I expected him to, but I felt crushed. Max wasn’t as upset. He admitted that he wasn’t sure he’d have been able to participate without becoming exhausted and pushing himself too far physically. In the end, he was relieved not to make it.

Since then, he’s stayed busy with chamber choir, a fall play, and a spring musical. But last year, after listening to his peers talk about show choir and seeing their relationships blossom and grow, he wanted to find another way to participate.

Trying something new

Max asked me to help him talk with the director. So I sent an email, and the director was eager to help. He also directs Max’s choir and the spring musical, and has always been willing to do whatever it takes for Max to participate. He’s even asked for certain things to be included in Max’s Individualized Education Program to support my son’s interest in the arts.

This past summer, Max, my husband, Jason, and I met with the director and discussed everything Max’s participation would entail. Competition days are very long. He’ll travel with the choir, and his dad or I will be at every competition to support him however we can, whether that means letting him take a nap in the van or helping him with food or medications.

At first, we thought he’d be a student manager, but over time, he became responsible for light and sound.

Being at the soundboard is new to Max, and he’s enjoying learning about another side of performance. He loves the production of it so far, and he even wants to explore it as a career option.

Betty Vertin’s son Max works the light and sound on his iPad at a recent show choir rehearsal. (Photo by Betty Vertin)

While Max is still working on being onstage, we know that using a power chair adds challenges, especially in theater. Not every part can be played by someone in a chair. However, the best part of Max taking the initiative to find a way to participate with his physical limitations is that he found something that will enable him to be a part of productions for years to come.

For that, I am a very thankful mother.

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.