Wyatt Rownd is a teenager with Duchenne. When he was 12 years old, he candidly described his behavioral struggles, how he felt around adults and how that affected his own self-perception. His mother, Jessica Rownd, generously shares his words and their family’s journey in her blog, Laughing Through the Tears.
“I wish they understood what it’s like to be me…“
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 can use it to help his teachers and others understand. I asked him if I could share and he said yes, so here it is.
- 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 dread coming to school
- I wish I wasn’t a bad kid
Not Just a Muscle Disease
Duchenne Muscular Dystrophy is largely known for the weakness it creates in the muscles of the body. Unfortunately, the effects of the disease don’t stop there. The lack of dystrophin also affects the brain and emotions. These, in turn, affect behaviors and relationships.
It’s typical that our kids with Duchenne cannot meet society’s expectations, especially those rules about “good behavior” and “following directions.” And so, they are often reprimanded or punished for their behaviors… for behaviors that are rooted in their disability and far beyond their control.