The excerpt below is from our 2023 webinar “Supporting the Duchenne Family” with guest speaker Dr. Molly Colvin. Dr. Colvin is Director of Massachusetts General Hospital’s Learning and Emotional Assessment Program (LEAP) and Assistant Professor of Psychology at Harvard Medical School. Click here to listen to the full episode.
Avoiding Common Parenting Traps
I’ve learned these three common parenting traps from the experiences of our families – including even the “unaffected siblings.”
- Avoiding the Topic of Duchenne
- Setting Separate Expectations & Rules
- Relaxing the Rules Too Often
Avoiding the Topic of Duchenne
In order to minimize the impact on a child or siblings, one of the traps that I think parents fall into is avoiding talking about Duchenne.
I’ve heard some teenagers talk about how it was really hard that they got to be sort of 12 or 13 or 14 before Duchenne was even discussed with them. They had questions, but they didn’t have the space to talk through that.
And I think that it’s important to start just like any of those other hard conversations you may have in mind. They are ones that you want to have on an ongoing basis and circle back to them over a child’s growth and development in a developmentally appropriate way. That is especially hard to do when you as a parent are also on your own learning curve about how you’re feeling and also being comfortable talking about it.
But it is important to have the conversation in some way while also making it clear that the sibling is not expected to step into the role of parenting or caregiving, right? So, you have to walk that line. It’s really tough.
Setting Separate Expectations & Rules
I think another common parenting trap whenever a child has a neurodevelopmental condition – when there is a child with a disability and other unaffected siblings – is that you wind up creating maybe separate expectations and separate rules for the kid with Duchenne. And the other kids are like, “Well, why do they get to do what I don’t get to do?”
It’s really important, I think, for the family have some language about that and say that part of parenting is about meeting the needs of the child. So, if you have a 10-year-old and a 5-year-old, you’re not going to expect the same thing from the 5-year-old. So, making that transparent and clear to the siblings I think can be really helpful.
Relaxing the Rules Too Often
I think other really common parenting traps can be relaxing the rules in the structure around the affected child. I think another that sometimes comes with that is overprotecting and limiting or pulling back from experiences.
You still have a child who’s growing and developing and needs to function in the world. So, it’s really important to still parent around that and have structure and expectations about what life is going to look like and living to the fullest and finding meaning and making sure that everything is the best that it can be.
If you have a fall or fracture or hospitalization or even just a difficult clinic day, you want to take a breath and take care of your child and comfort them and relax some expectations – and that’s OK.
But not every day is the day where you go out for ice cream, right? The next day, you still might have to get up and go to school and so that’s important. Or if your child with Duchenne doesn’t feel like they belong in their community and with their peers, having the same expectations helps to normalize their belonging.
So, it’s important to be able to navigate both around those things. And it can be hard.