The excerpt below is from our webinar “Challenging Behaviors of Children with DMD”. Thank you to our guest speaker psychologist Dr. Natalie Truba of Nationwide Children’s Hospital. Click here for the full podcast episode.
The Stress of Socializing
It’s vital to recognize that the individual with Duchenne will likely be impacted by an enormous amount of stress due to socialization with peers.
There are tremendous difficulties in making friends or experiencing challenges associated with having different mobility expectations – or demands – at school. Sometimes kids with Duchenne are not able to fully participate in activities that would help them find common ground with their peers. If they’re not able to participate at the same rate or in the same way, that really limits their opportunities to connect.
And not only that, but these kids are stressed and impacted from a functional standpoint, too. So if they’re fatiguing, fatiguing faster, or tripping a lot more, or if they’re not as coordinated and they’re getting picked on in class because they’re perceived as not being athletic – all of that negatively impacts them and causes stress for them at school.
“Othered”
Caring for an individual with Duchenne takes a lot of time and it takes skill. A parent with a child with Duchenne can’t just say, “Oh yeah, you go to John’s for the weekend. His mom doesn’t know anything about Duchene. She doesn’t know how to move you or anything. She’ll take care of you for the weekend.”
That’s not going to happen because you guys are gonna be like, “OK, here are my medical cards. Here is more medical stuff…” The other parents are gonna be like, “OK, no, I don’t want to get sued. I’m not gonna take on that responsibility.”
Or their house isn’t ADA friendly because… why would it be?
These things very much “other” them. The things that they need as part of their care and their medical procedures – the tools they use – “others” them from their peers. It makes it very obvious for them and it makes it very obvious for the rest of the kids, that kids with Duchenne are different.
Society is not structured in a way that “differentness” is handled very well and so they are “othered” because they are different. And that is just really unfair to them.
More To Consider…