The excerpt below is from our webinar “Supporting the Duchenne Family” with guest 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.
Parenting the Whole Child with Duchenne
Dr. Colvin: So dystrophin is the protein that’s really most impacted in Duchenne. What we really have come to understand in the last decade or so is that dystrophin is not just expressed in muscle. It’s also expressed in the brain and it’s not even expressed evenly throughout the brain.
There are certain regions in the brain that are more impacted than others by the reduced dystrophin level. Those are regions that typically have a higher expression of dystrophin and are really important in skills related to learning, memory, emotional regulation and integrating information.
What we’ve increasingly begun to understand is that for some individuals who have certain genetic mutations, some of those regions in the brain may move on a different developmental trajectory.
That means the kids with Duchenne may have differences in terms of the way information is being processed, emotional regulation and also – to some extent – social interactions, all of which are common vulnerabilities for those with Duchenne.
So when we think developmentally about what a child with Duchenne needs, we need to recognize that it’s not just the physical piece, but needs may also include psychological, cognitive and learning pieces as well.
Like a lot of kids, kids with Duchenne often like to have things in a particular way, but the volume is kind of turned up a little bit more for them. Change is much harder for them to navigate.
So with parenting, I think sometimes you want to accommodate your child so that you don’t risk having a tantrum or meltdown or sort of losing it because “that’s not the way that this is usually done.”
But by always accommodating, you also reduce your child’s ability to learn to be flexible and adjust and roll with things. So pleasing your child or meeting your child’s preference for sameness and rigidity can sometimes decrease their ability to learn how to be flexible and to adjust to change.
You’re also increasing the pressure on yourself to always be the one who’s there, to always be the one who’s doing it the same way.
More to Consider