Below is an excerpt from our livestream “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 podcast.
I think struggling with finding the support you need is really common and it’s really hard. It certainly compounds the grief period. It also adds some risk around developing anxiety and depression, because you need the social support and you’re not getting it.
You know, years ago, the fabric of the immediate and extended family was able to support you through hard times. Those were the people that are more likely to be moving in and out of your house regardless of whether it’s clean or not. Those are the people who know your house well enough that they could step in for short periods if needed.
Then in the 20th century, a lot of American families started moving away from their immediate families. Their parents didn’t live down the street anymore. Maybe they didn’t even live in the same state.
…you need to know that support really is there…
I think part of the struggle to establish our support system is that we don’t always do a great job in our culture about being explicit and asking for help. I think all of those things are hard to do if you’re not practicing them regularly. I do think that most of the time other people – your good friends and your community – are willing to connect with you like that.
With the absence of that local extended family, it’s actually really important to mobilize what you need. And it may be that you say to your best friend, “It really would mean a lot to me if you’d come over every couple weeks and just sit with me from 9:00 to 10:00 and we can watch a bad TV show or talk about something.” Or you could even have a book club with friends where you’re sort of talking about the book.
There need to be touch points for you in your community so you don’t lose your community and so you can practice saying, “I need this” for the small things. Then it’s ultimately easier to say something bigger like, “Could you please pick up my other child today because we have an appointment downtown?”
A lot of people find support through community organizations, including church and faith-based organizations. I think a lot of people find that it’s easier because it’s more normalized within those settings to say, “I need this right now” and for somebody to step in and to hold that space.
Online groups for parents of kids with Duchenne can really make a difference, too. It sort of feels like there’s somebody in your corner, even if you’re not talking to them all the time.
I think it’s important to have your tribe of people who are in those supporting roles, so that you feel like there’s a buffer, especially when the emergencies happen. However you define it and however you access it, you need to know that support really is there.
