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…
There needs to be a proactive attitude to prevent overwhelm.
So let’s say there’s a substitute teacher. Parents should be called if there is going to be a substitute and parents should be making the decision whether or not to send child to school.
What we know about subs is that the routines will be off, how they manage those classrooms will be off, all of these things. And our kids with Duchenne tend to not tolerate that as well as other kids will. Likewise, if there’s going to be a fire drill, parents should know about that. A school assembly? Parents should know about that, too.
Oftentimes parents aren’t notified largely due to rigidity on the school’s end like, “Well, that’s inconvenient for us.” But these are the very things that are overwhelming to these boys that could be planned around and engaged in differently. It’s really a game changer.
If parents are not going to be notified, then there really has to be rescue strategies at school to help prevent cluster meltdowns from the sub days. Otherwise, the child may have several days of absences in order to recuperate.
