The excerpt below is from our webinar Challenging Behaviors of Children with DMD. Thank you to psychologist Dr. Natalie Truba of Nationwide Children’s Hospital for being our guest speaker. Click here to listen to the podcast episode.
Demands of the School Setting
The school setting can be incredibly overwhelming for kids with Duchenne. They’re just asked to do things that are really unrealistic at times.
Given how their brains process information and how they are unable to regulate themselves well, and given that they are then put in a very overwhelming school setting and are still expected to learn… it just seems like a ridiculous place to be operating from for a bunch of adults. Then on top of that, we’re confused why they’re not learning at the same rate as other kids… it doesn’t make sense, but alas, here we are.
The main challenges these kids with Duchenne will face at school are the neurocognitive impacts, physical demands, social stress and the cluster meltdowns. The best ways we can help is with teacher selection, modifying their schedule, providing a one to one aide, notifying parents ahead of time of changes and advocacy.
There’s a lot of physical demands associated with completing school work that become very hard for kids with Duchenne. Sometimes, teachers just don’t think about that.
For example, when it comes to writing, the kids need to know how to write, right? And if there’s an assignment that is specifically a writing assignment, then they need to show you that they know it. But – for example – do they need to learn cursive? Is it worth the battle of learning cursive? Do we really need to beat into them cursive?
Sometimes teachers are unwilling to modify writing demands for homework assignments. If it’s not a writing assignment, then they shouldn’t have to do their answers in written format – there are several other ways they can show that they know the material besides writing it. Really, the writing sometimes gets in the way of them doing their work.
Do they need to write? Yes. But can they do their work on the computer and instead of writing it by hand or writing it in cursive?
The same thing goes with other demands that inherently exhaust the student with Duchenne. They need accomodations and we just need to get creative.
The neurocognitive components of Duchenne impacts not only how they tolerate the environment, but also their executive functioning maturity and their ability to pay attention and do some of the cognitive things that are required of students.
It often seems like there’s a two year delay in acquiring these. So, if they’re facing the demands of 2nd grade, they might really be a couple years behind that from an emotional and functional standpoint. This also means that they are chronically behind their classmates.
Kids with Duchenne can learn the lessons, they just need it to be a little different. So that mismatch is occurring sometimes in those academic settings and it can paint a kid as looking like a different type of learner or an incapable learner… but they’re not.
Are kids with Duchenne capable of learning 2nd grade like their peers? Yes… but their ability to do that in a very overwhelming environment and at the same pace or in the same manner as peers is often a little delayed.
The impact of the stress associated with socialization and peers is super real and very important.
There are real difficulties with bullying or making friends or experiencing challenges associated with having different mobility demands put on you at school. Sometimes kids with Duchenne are not able to fully participate in activities that would help them find common ground with their peers or they’re not able to do so at the same rate or in the same way, which then limits their ability to connect.
And then, how their muscles are impacted from a functional standpoint also affects peer relationships… So if they’re fatiguing faster, tripping a lot more, or not as coordinated and getting picked on in class because they’re perceived as not being athletic, all of that negatively impacts them and causes stress for them at school…
These things very much “other” them. The things they need as part of their care and the tools they use, it “others” them from other kids. It makes it very clear to themselves and to other kids that they’re different. Unfortunately, society is not structured in a way that differentness is handled very well, and so then they are “othered” because they are different and that is just really unfair to them.
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.