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.
The Cumulative Effect
Hopefully you can see now that school settings are incredibly overwhelming from a sensory standpoint for these kids. Actually, some of the kids I treat simply do not tolerate the school setting.
For example, they may have a stressful day at school and it might impact them for days because their body just doesn’t shut down as well or as quickly as other kids. And so, that clustering or that combination of things piling on top of them without any shut down or release that you would expect to see from non-Duchenne kids, it really impacts them.
To counter this cumulative effect of school stressors, we often adjust their school schedule – we might truncate their days to half days and also keep them home on Wednesdays. Then – and only then – can some of these kids finally tolerate being at school.
