The excerpt below is from our webinar Challenging Behaviors of Children with DMD. Thank you to our guest psychologist Dr. Natalie Truba of Nationwide Children’s Hospital. Click here to listen to the full podcast episode.
One of the main goals of school is to help support kids in learning what they need to learn and how they need to learn it. And the things that these kids with Duchenne need in order to succeed are going to look quite different from the other kids.
…the things these kids with Duchenne need to succeed in life are going to look quite different from what the other kids need…
So, if that means they get the most out of school from being there 4 hours a day there, then they need to learn how to capitalize on that time. They need to learn how to self-manage and how to get other things done at home because they’re going to have to be functional adults one day.
As adults, they will need to be able to discern whether a work or volunteer setting will be compatible with their needs. They need to know how many in person hours they can manage a day. They need to know how to divide up their responsibilities between home and in person hours. The bottom line is that they need to know how to function without feeling overwhelmed…
The school setting can be incredibly overwhelming from a sensory standpoint for these kids. They’re just asked to do things that are really unrealistic at times. When you know how these boys’ brains are processing information and not really regulating well, and then we put them in a very overwhelming setting and they’re not learning at the same rate as other kids, it’s obvious that these kids are just overwhelmed by so many things.
The school system is a very, very overwhelming environment for these boys. How their days are structured and what is prioritized are really important for their success.
Kids with Duchenne fatigue cognitively just like they do physically. So their academically demanding classes shouldn’t be in the afternoon, when we know they will have a harder time. Likewise, we shouldn’t put electives as the 1st, 2nd or 3rd period when they are at a prime time for learning. You know, while art class is important, parents can engage and duplicate those lessons at home, if needed.
Once their schedules are organized properly, then we can build those breaks into the day. So maybe they take a break during an elective in the early afternoon. Maybe they’re doing their art project outside of the room so they can just focus on drawing and they’re not getting bombarded by sensory stimulus, right? We need to think creatively to meet the needs of these kiddos.
Even with these adjustments, there are kids who are not tolerating the school setting. We might truncate their days to half days and then they don’t go to school on Wednesdays. Only then they can tolerate being there for three hours on 4 days of the week.
If you realize as a parent – my kid is just not going to tolerate 8 hours of school a day – then have a lot of conversations with the school to help them understand that it’s really important to modify their schedules appropriately, and even truncate the days when necessary.
I do think that remote learning has been a godsend for a lot of the boys. When COVID started, I fielded a lot of concerns from parents about, “Oh, is this going to be horrible? What are we going to do?” And then parents were like, “Nevermind. This is great. We’re doing so much better. My kid is willing to learn. This is awesome.”
A lot of the kids with Duchenne are actually now – post COVID – having a hard time transitioning back to in person school because they have been thriving at home. The majority of kids are like, “But I’m learning better and I’m doing my classes and I don’t feel crazy at home.”
And if there’s one thing that I wish schools could see, it’s that the school environment is so overwhelming for these kids that it actually sabotages their efforts at learning most of the time…
