Challenges of School with Duchenne
I wish they understood what it’s like to be me… From Laughing Through the Tears Blog
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.
- 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
Coping with Disease Progression
With a progressive muscle wasting disease like Duchenne Muscular Dystrophy, students with Duchenne have a huge amount of change and grief to cope with, so much that it’s even challenging for our adults with Duchenne to process.
That first year using a wheelchair can be particularly challenging. From grief, to anger, to a new level of isolation and exclusion, that adjustment period introduces multiple layers of challenges in addition to “typical school stress.”
Unfortunately, in addition to the emotional dysregulation brought on by the lack of dystrophin, many of these students with Duchenne do not have adequate coping skills to handle the change and grief that goes along with having Duchenne. Students’ misplaced emotions over their terminal disease or exclusion from the other students can often complicate school situations.
Rarely do these individuals with Duchenne have someone to talk to who really understands. Even if they did, the stigma of caring for male mental health still runs deep in our culture. The students with Duchenne – who are mostly male – may simply refuse help.
It’s near impossible to manage emotions when you don’t have the skills. Unfortunately, pushing these feelings down and ignoring them certainly doesn’t work. In fact, that strategy can even breed suicidal ideation.
To top it all off, when the brain is in this heightened state of emotion, learning is hard. Really, really hard.
More Than a Muscle Disease
While the hallmark of Duchenne Muscular Dystrophy is the weakness in the muscles of the body due to lack of dystrophin, the brain and emotions are not left unscathed. The lack of dystrophin therein is frequently evident in their mental health and learning differences.
In fact, our loved ones with Duchenne have a much higher incidence of mental health diagnoses (and associated behaviors) than the general population. Duchenne-induced autism, Duchenne-induced ADHD, Duchenne-induced OCD are just a few of the common co-morbidities.
Learning differences certainly complicate matters at school. Dyslexia, dysgraphia, and dyscalculia frequently appear in our Duchenne population, along with all the other fine motor challenges of weakening muscles.
Many individuals, families and educators find this emotional and learning part of Duchenne harder to manage than the physical part.
The physiological stressors of Duchenne and subsequent need for coping skills don’t magically disappear in a school setting. In fact, they often increase. The student with Duchenne frequently faces many invisible stressors in a typical school setting.
Due to the physiological stress children with Duchenne experience, there are several situations that exacerbate meltdowns. The school setting is just one of those.
The student with Duchenne often faces many physiological, social, emotional and physical challenges in a school setting. From sensory overload, to handwriting fatigue, to trying to understand social cues, school settings and academic demands are a lot to manage, and often it’s just too much.
From inaccessible playgrounds to bullying to friends without Duchenne-friendly homes and near constant need for supervision, most children with Duchenne face multiple layers of peer stressors and challenges.
Occasionally, students with Duchenne become bullies themselves, either from misplaced anger about his (or her) disease, or to stop the bullying from others before it can begin.
When students Duchenne actually do have good friends at school, those friends may become their primary source of physical support. Daily anxiety and fear – sometimes multiple times a day – can become a constant companion for the student with Duchenne who wonders which friend will be able to help next.
No matter how they are looked at, these are not simple classmate relationships.
The Cumulative Effect: Behaviors at School
Given the way the lack of dystrophin affects the body and the brain, it’s typical that our kids with Duchenne do not meet society’s expectations. Exhibiting “good behavior” and “following directions” can be particularly elusive for them.
Despite the fact that many of these behaviors are rooted in the disease itself, students with Duchenne are still frequently blamed when they turn in incomplete assignments, don’t focus in class, or academically fall behind their peers.
This repeated barrage of stress from school contributes to creating days of cluster meltdowns for the individual with Duchenne. Once that sympathetic system is engaged to this extent it affects the quality of life both at home and at school.
Relationships with Teachers and Staff
While the policies and atmosphere at schools are changing generation by generation, students with Duchenne still face many barriers when trying to advocate for themselves.
A typical school response to Duchenne behaviors is punishment or being reprimanded for their behaviors… for behaviors that are rooted in their disability and far beyond their control.
Punishments for Duchenne-induced behaviors rarely fix anything. In fact, it’s just another layer of stress on top of so many, with little to no coping skills. Punishments often just make everything worse, creating for the student the personal reality of an unsafe a school atmosphere ripe for very real school trauma.
Instead of punishments and repercussions, what our kids really need is for someone to ask, “What is this behavior telling us about the child?”
Understanding, Compassion and Help
When evidence of unsafety and trauma manifests itself in meltdowns and explosions occur, all that our children with Duchenne can hope for is an adult to understand what’s going on, to show them compassion, and to help guide them back to a manageable level of stress.
More to Consider