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 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.
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 gonna 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 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 to:
