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.
Minimizing School Meltdowns
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 with teacher selection, modifying their schedule, providing a one to one aide, notifying parents ahead of time of changes and advocacy.
Authoritarian teachers are just not good matches for the boys – you know, teachers who say, “I run a tight ship. And this is like this. And that is like that.” A classroom like this is not an environment where a kid with Duchenne will thrive.
Along those lines, a teacher who believes in punishing and punishing harder needs to be avoided. Punishing is actually the very opposite of what you should do. In fact, using punishments is harmful advice for managing these boys. It just makes the situation worse.
You need a teacher who will work with you, the parent. Ideally, a teacher who will believe you to begin with and do the things you ask them to do for your child. Then the school, you and your child can all avoid a lot of heartache.
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 now, actually, are 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 so I think again, if there’s one thing that schools could accept, it’s that the school environment is so overwhelming for these kids that it actually sabotages their efforts at learning most of the time…
One to One Aide
Many schools offer one to one aides when there’s physical function decline. It’s also important to note that if the kids are struggling to manage their emotions in the classroom setting a one and one at aid will help.
There are times we get so fixated on the physical progression of the disease that we overlook some of the even more paralyzing aspects, like emotional instability, social exclusion and environmental overwhelm. Having a calm helpful adult available to them at all times can really be a gamer changer for the child, the teacher and the other students in the classroom as well.
Parents Notified Ahead of Time
The other thing along those lines is having a proactive attitude about preventing overwhelm. So let’s say there’s a substitute teacher. You should be called if there is a sub and you should be making the decision whether you are going to send your child to school today. Because 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 gonna be a fire drill, you should know about that. A school assembly? You 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.
So if they’re not gonna call you, then we really have to have rescue strategies at school to help prevent cluster meltdowns from the sub days and consequently several days of absences to recuperate.
Finally, we may very well get to a point where we try our things that usually work and they’re not working – maybe we didn’t sleep as well or whatever – at that point we’re at a decision:
“Am I going to keep pushing him in this place, knowing that then we might be dealing with cluster behavior for three or four days?
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 gonna 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? Well, probably just one day.
You know, 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.