The excerpt below comes from our livestream “Challenges of Emotional Intimacy for Adolescents & Adults with DMD” with guest psychologist Dr. Natalie Truba. Click here for the full podcast.
Learning Life Skills
I think one place we go wrong in DMD is when we don’t know how to parent.
There are a lot of really obvious co-occurring and comorbidities within the population, so our kids tend to be very rigid or very overwhelmed. In response, we often do all these things to minimize the experiences when they really need to learn those skills.
The expectation can’t be that you never experience things that cause distress. Then you’re not learning anything about living life. We do need different expectations and a feasible plan. The new expectations need to include:
- that we aren’t going to avoid doing this thing.
- that we do all these other little things so that we can do this bigger thing.
- that we can get it through it.
- that we can be successful.
Some of you might be thinking, “Wait a second, but in all your other talks, you talk about trigger management and staying ahead of stuff and not letting these things happen.” I do and this might seem counterintuitive, but it’s not.
I also talk about habit development around the times where you can’t plan and stay ahead. These environments are just part of life. I think a great example here is medical visits.
How do you incorporate your child into medical visits? Are you the only one talking? They look to you and then you’re answering because they are looking to you and you’re like, “Gotta get through this. Let’s go.”
Well, that happens. You’ll go to the doctor once or two times a year – maybe they’re neuromuscular visits. Now all of a sudden it’s been 10 years and nobody talks to the kid or to the young man. They’re just looking at the parent and the kid’s looking at the parent. And here we go.
Now we’ve just really never developed a skill set of talking with medical professionals or strangers without our parents there. If that’s playing out in the medical visit, that’s playing out in all sorts of places. And so it’s little things that build up over time.
Teaching Life Skills
So, how do you teach these life skills so your kid with Duchenne can tolerate and participate in uncomfortable environments? How do you do this when you have other things demanding your time and attention. I have other kids. I have to make dinner. I have to go to work.…
Sometimes it’s like, “You know what? I can’t do this with you right now” and that might continue. Then we’re just not developing the skill because we don’t have the time because it takes so much effort to help develop that skill.
It is hard. I don’t think it’s a parenting deficit. I think that these are hard things to teach, and that’s where therapy and other things come into mind like:
- How do I do this?
- I don’t know how to easily parent my kid.
- My kid is doing things that my other kids didn’t.
- I was never taught how to do this when I was watching people parent as a kid.
- I get all this advice – none of which helps because they are not their parent.
- They’re telling me advice that doesn’t apply to kids with DMD.
And so it really comes down to finding somebody like me – in the neuromuscular clinic, or another psychologist – that can help you know your kid and help you figure out how do we help them develop the skill based on who they are? Because remember, everybody’s an individual, regardless if you have DMD or not. You have unique ways that you think and you feel and that you see the world in helping teach the skills.
And the context of that is really important. Because I can tell you all day like what works for me, but that’s not necessarily gonna work for you. So having something or someone who can help you modify the situation and accommodate will be incredibly important.
For example, if your kid needs a personalized plan to teach them how to talk to people, it may be very helpful for someone to help you design a plan so your kid will learn these skills. For example, someone to help you brainstorm 1) what gets in the way of them talking? 2) What makes them comfortable? 3) What are the steps they need to start to feel comfortable?
So, even though all this may seem counterintuitive, it all really does fit together. It’s important that we mitigate and try to stay ahead of the things that we know that we can predict. That’s where we can learn and teach how to actually do this. That’s the goal of staying ahead of things, because if we don’t get through it and they’re never successful, they’re not going to learn the skill.