9 Things Parents of Kids With Neuromuscular Diseases Wish Teachers Understood

“Neuromuscular disease” is an umbrella term for several muscle-debilitating diseases that cause progressive weakness and degeneration of skeletal muscles used during voluntary movement. You may have heard of a few of these conditions — amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD) or Charcot-Marie-Tooth disease, for example — but neuromuscular diseases remain unknown and misunderstood to the average person. It is unclear how many people are affected by neuromuscular diseases, but they do not discriminate and often affect a person’s ability to walk, talk, eat and even breathe.

As we start a new school year, The Mighty teamed up with the Muscular Dystrophy Association to raise awareness about neuromuscular diseases and the challenges students and their families face when teachers and school staff do not understand their condition. We asked parents in our communities what they wish their children’s teachers understood about neuromuscular diseases this school year.

Here’s what they had to say:

1. “Neuromuscular disease can affect how you concentrate because you are so tired. It can affect your handwriting to the point where you write in a messy way and can’t write for a long time at all.”

2. “I am not mean, aggressive, or rude, but I will advocate for my children, and sometimes, firmly. If my son is being bullied because he cannot run, I will fight for him. I am not your enemy, but I have to have thick armor in this world to protect my children. I know the job as a teacher is hard, but my job is hard as well. Please work with me and meet my son where his is on his journey.”

3. “My daughter wants nothing more than to blend in. See her, not just her wheelchair.”

4. “My son is wonderfully stubborn, smart and lovable. Some days are harder than others. Some days he’s super tired but can’t explain it because he’s nonverbal. He has a neuromuscular disease, but he is not the disease. What works for one student may not work for him.”

5. “It might take longer for students with muscular dystrophy (MD) or other neuromuscular diseases to get to class than others, so please bear with them on this.

6. “It’s not contagious. People [with neuromuscular diseases] are just like everyone else. They just want to be accepted and treated ‘normally.’ They may need some help physically, but they’re still real people with feelings.

7. “Have patience, compassion and seek knowledge for this disease.”

8. “We are not making excuses when our kids are too tired or anxious to attend or do their homework. You do not know our children like we do. They have anxieties we could not even fathom due to their bodies not cooperating with them.”

9. “I appreciate the concern greatly for his well being but don’t overthink his condition. It may sound harsh but a lot of people hear “disability” and think the person can’t do anything. My son is a wonderful, strong 10-year-old and he is very vocal. He would be the first to say if he can or can’t do something. These individuals including my son have been raised to be independent, and the minute you question them and withhold them from being able to make their own decisions, they feel not so independent and it also at times embarrasses them.”