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 to listen to the full podcast episode.
Duchenne’s Impact on Families
I joke all the time with people I work with that I will never give up my kids and families with Duchenne and Becker. Although these kids are incredibly challenging, I’ve never met a parent population in my life that is so committed and so adherent to the things you ask them to do.
So although these kids are challenging, they have parents who tend to be committed and follow through with the things that are asked of them – regardless if that adds another hour onto their already 6 hour time frame of care that day.
But that is going to impact the family unit..
Manifesting Maternal Carrier
If you are a manifesting maternal carrier and you have a lot of experiences with anxiety, your pattern is probably very similar to your son’s pattern.
When I hook moms up to biofeedback equipment with my boys, I see a very similar pattern – a kind of feeding pattern. Sometimes just recognizing that about yourself and using some of the strategies that you’ve learned to help the boys can be very helpful to you, too.
Sometimes restructuring things in your family that are known trigger times – like bedtime is a common one where my manifesting moms are getting. and they tend to go poorly. Bedtime is a hard transition point for the boys. When you have a vulnerable sort of arousal system like they do when they’re acting in a certain way, no matter how much you’re keeping it together, your body is still reacting.It just makes it really hard for them to shut down and wind down because humans are very socially contagious, connected creatures. So they’re going to feed off your physiological arousal passes and we see that in our computer data.
Sometimes just restructuring those things and having dad do it or having a different process for that can be really helpful. I mean, if you’re a single parent it is what it is. But knowing that that is part of it and it’s not your son’s fault. It’s not your fault. It just is a really hard thing for them to do and for you to do that. That’s just real.
It just makes it really hard for them to shut down and wind down because humans are very socially contagious, connected creatures. So they’re going to feed off your physiological arousal passes and we see that in our computer data.
Significant Others
There’s a reason why the majority of divorces occur in the first four years after having children for the first time. Having children is incredibly stressful and it changes the nature of your partner relationship naturally. Kids take a lot of attention and you automatically don’t have as much attention for yourselves.
For this population – where you have kids who need more overtime and they decline more overtime – that never goes away. Normally your kids get to a place and you’re like, “oh, we can reconnect.” But for these boys that need persists. You can quickly find yourself ten years later, like “we’ve been living different lives, just trying to survive. And we don’t really have this partnership.”
Then that adds stress. Sometimes families dissolve and now that’s even more stressful because caring for these boys with two adults is hard enough, let alone doing that as a single parent.
Expectations prior to giving birth are real. Nobody is going to be like, “Oh my gosh, I hope I have kids with chronic medical conditions that are horrific and gonna cost all this time and money and pain. This sounds super fun.”
No. You have all these hopes and dreams for your kid. You give birth, you’re doing great, and then you start to notice these things over time. And there’s a grieving process. Not everybody grieves the same. Parents grieve differently and that can cause stress in your relationship.
Because you don’t know that until you’re in it. It’s not like you’re sifting there through prospective partners and you ask one, “Would you do if your mom died?” You’re not gonna have that conversation and they’re not gonna know. So if they tell you what they would do, they might actually not do that thing because they have never been in it.
And so we just there’s parts that we just don’t know about another person until we’re in it. And those parts can just sometimes be incompatible.
Parenting
Likewise, the things that these boys sometimes need are not compatible with who parents are. Not every parent is incredibly patient. Some parents have ADHD, some parents have their own mental struggles. Some parents have very high stress jobs.
There’s not always a good fit between parent and child and that’s not your fault. That doesn’t make you a bad parent because you have less tolerance than another parent for tolerating some of these things. It just makes you human.
Also, there is a real impact on sibling development and sibling interactions. Those two things significantly impact each other with the kids and their siblings – and vice versa.
Financial
There’s a real financial impact on families with this.
If you have a two-parent household where one of you has left their career or left their job to stay home to take care of your kid, that’s real. You’re sacrificing. That changes the dynamics for you and your family and for you and your partner when you’re not an earner anymore.
There’s a lot of things that go along with that. It can be a whole lot. And that is going to impact the entire family unit, too…