Redefining Independence for Duchenne

The following is an excerpt from our webinar with Lauren Fritz about Interdependence and Duchenne. Lauren Fritz is the mother of two sons with DMD. She is a fulltime private practice therapist and also cares for her sons. To listen to the full podcast, click here.

Redefining Independence for Duchenne

I am a therapist and have been for 27 years. And working with adolescents has always been part of what I do. I don’t at all claim to be an expert with adolescents, but it’s definitely been part of what I’ve always done. I also happen to have two boys who are adolescents with Duchenne right now – Jake and Ryan – who are ages 19 and 16.

Textbook Adolescence

Let’s just talk about textbook adolescence first, and we’ll put Duchenne over here for a second.

So, the main task of being an adolescent is to become individualized enough that you’re willing to leave your parents – to become confident and independent enough that you’re willing to leave home and start a life of your own.

Many teens do this by exploring their environment, broadening their horizons and gaining confidence, developing some attitudes where they think about moving away from their parents in terms of their thinking, and developing confidence in that choice.

They also explore different situations that involve friends, different situations that maybe involve activities, travel, and less involved parents. Those are things that are really common for many adolescents.

That – as we all know – looks different with Duchenne.

Adolescence + Duchenne

When you have Duchenne, there’s a physical variability that you have to deal with. It’s not something that many teens would choose. That variability is the fact that you will likely need help from your parents physically or from somebody else.

But there’s a lot of individual variability within the Duchenne diagnosis itself that comes into play.  No two individuals with Duchenne are exactly the same. There can be a vast difference in physical and cognitive abilities even between individuals with the same mutation. So even how much help will be needed is unknown to an extent before you get there.

Regardless of how much help may be needed, the need for physical help likely cannot be avoided and there are limitations that come with that need – especially in the kinds of activities you may be able to participate in with peers.

First, some people with Duchenne have huge cognitive challenges and I want to really honor that. For those who don’t have many cognitive challenges, that is definitely something to work with as much as possible. I know that anxiety and OCD and autism are very real issues with Duchenne, too.

Secondly, as a teenager with Duchenne, peer interactions will likely be limited. You’re not going to be on the travel soccer team, for example. If you want to go to college, there will be extensive questions about what that’s going to look like. Unfortunately, a lot of those answers will likely depend on physical health. So, while my older son goes to virtual school here at home, another child that has Duchenne might go to a university and live there.

Thirdly, because they need our physical assistance in so many ways, these adolescents are sort of forced to share space and share things with parents that a teenager without extensive physical needs doesn’t have to. For example, I think about my sons often having to be in the same airspace as my music or my husband’s music.

Finally, there’s another important difference to note between the teenager with Duchenne and the one without. The adolescent without Duchenne often lives in a bubble of not understanding mortality yet and truly around teen years is often when that really sings. For example, you see teenagers doing a lot of things that are kind of goofy or Daredevil-ish at this time because they really don’t understand that we’re all mortal.

Around this time adolescents often experience somebody in their lives dying – usually a grandparent or sometimes a parent – but somebody dies and they just then begin to understand that life really does not last forever.

People with Duchenne don’t necessarily have that luxury. When you’re growing up with Duchenne, you’re losing physical ability – continuously – and you’re feeling unstable within your own body. You’re losing the ability to walk. You’re losing the ability to feed yourself, to toilet yourself, to dress yourself. There’s a very inherent sense of something not being okay that you live with all the time. And so that sense of being invincible is not there. It’s just not there.

Redefining Independence for Duchenne

At some point, there’s got to be an acknowledgement that independence and adult life are going to look different for adolescents with Duchenne than their peers. At some point, families will have to come to terms with that.

I think one of the first steps in that is to examine how we define independence. Since society is society, certain beliefs have been instilled in kids as they go through school. A common belief is that you go through school to go to college, to get a good job, to be successful, to be independent, etc.

But is this path the only path to success and independence? Do we need to debunk what society is saying the successful benchmarks are? This is likely a vital conversation that we need to initiate with our children. Good openers for this conversation include:

  • What does success mean to you?
  • Does success look like developing a hobby that you really love?
  • Does success look like finishing a project you really like?
  • Maybe success looks like going to college?
  • Does success look like volunteering somewhere you’d like to volunteer?
  • Does success look like traveling?
  • Does success look like meeting someone you want to meet? Someone you know?

We may also need to explore with our children if they think that society’s definition of independence is the only acceptable definition. Good openers for those conversations include:

  • Does independence only mean physically in terms of living in a different space for you?
  • Does it mean independence in terms of having some emotional independence?
  • Does it mean just having some clear boundaries?
  • Maybe for the adolescent and adult with Duchenne, independence is going to be managing how you deal with caregivers.
  • Maybe independence is scheduling your own appointments.
  • Maybe it is saying “close the door on your way out” or “Give me privacy”? (like my son does, once I’ve helped to get him ready.)
  • Maybe independence is going to be saying “I do”, or “I don’t” want to go to college?

Sometimes, in my house, “independence” is just kind of going off the grid of what everybody else is doing. You know, being willing to not feel the pressure, being willing to not feel like you are supposed to keep up with what everybody else is doing – whether that is pressure to go to prom or go on spring break or listing your top three colleges you are getting into or – whatever it was – just allowing yourself to go off the grid and create a future that makes sense to you. And if that means going to community college or renting an accessible house to share with your family for spring break or not going anywhere at all for spring break because you’re dealing with your medical recovery from a surgery… that is fine.

Truly, independence can be defined in a lot of ways. It’s important to recognize that you are not on the same schedule with people who don’t have Duchenne and sometimes not even on the same schedule with people who do have Duchenne. I think there’s a different level of needing support and needing encouragement, but there are still parts of you that are very viable and capable.

I really encourage you to accept the challenge of redefining what independence is going to look like for you and your family. I encourage you to give yourself that freedom.