While there is minimal research about the spectrum of behaviors for women with DMD, the little research we do have suggests that – just like the males – the carriers’ nervous systems are also affected, making them prone to anxiety and agitation.
Multiple dysregulated nervous systems can quickly escalate conflicts at home. Home life can then get even more complicated if more than one son has Duchenne or if any daughters in the household are carriers.
Carrier testing is especially important for your daughter if she is biologically capable of reproduction. Unfortunately, some girls do find themselves unexpectedly pregnant at a very early age. You and your daughter both need to know her carrier status before this becomes an issue.
While many girls don’t plan pregnancies at a young age, pregnancies do occur. There are decisions to be made and financial responsibilities to meet that are often beyond the capacity of an adolescent or young mother. In fact, many grown women struggle to meet the needs of a child with Duchenne, let alone a girl, teen or young woman. Parenting a child with Duchenne goes far beyond diapers, medicine and physical therapy:
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.
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.
Even apart from the physiology of Duchenne, the mental health for carriers tends to be affected as well. Elements of guilt and blame frequently shadow the carrier. These, in turn, are often reinforced by floundering marriage dynamics.
As if all that wasn’t enough, carrier grandmothers often carry guilt and blame as well, complicating extended family dynamics even more and sometimes even shrinking the support network for the carrier herself.
