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.
Unfortunately, we may very well get to a point where we try our things that usually work and they’re not working – maybe the child didn’t sleep as well or whatever. At that point we’re at a decision:
Are we going to keep pushing him and risk triggering days of clustered meltdowns?
Are we calling today a wash so we can restart tomorrow?
Are we calling today a wash and sending him home with the hope and the goal that – with a good chunk of time away from that school setting – he’s going to get a decent enough shutdown so we can restart tomorrow?”
When the schools keep pushing, that’s when you see those cluster sort of days. So we’re trying to decide – do we want to wash one day of school or do we want to wash 3 days?
