When picking Wyatt up from school not long ago he got in my car and broke down. He said, “I wish they understood what it is like to be me.” I told him to write it down so I could use it to help his teachers and others understand. I asked him if I could share and he said yes, so here it is.
- I dread coming to school
- Tired all the time
- Hard to sit still
- Always being watched
- I feel like they are waiting for me to mess up
- Loud noises and voices make it hard to concentrate
- Multiple steps make it hard to follow so I stop listening
- Hard to keep up with my friends and it makes me sad
- I think about an active shooter threat and what I would do
- I wish I wasn’t a bad kid
This excerpt is from Laughing Through the Tears Blog by Jessica Rownd, DMD mom.
The school setting can be one of the most stressful environments for the child with Duchenne. Due to the lack of dystrophin in the brain, school stressors are multifaceted and sometimes even traumatic.
While the hallmark of Duchenne Muscular Dystrophy is progressive weakness of the muscles, it also affects the brain and emotions. Combine all three and it is understandable how school struggles are common in the Duchenne. For students with Duchenne, school demands come from many directions: physical demands, academic demands, neurocognitive demands, social demands, and many more.
Thankfully, we can help the student with Duchenne. We can reduce the stress of school and minimize their daily traumas through 1) understanding more about the Duchenne brain and 2) implementing changes to their schedule and environment.
