The following is an excerpt from our webinar with Lauren Fritz about adolescence and Duchenne. Lauren Fritz is the mother of two sons with Duchenne. She is a fulltime private practice therapist and also cares for her sons. To listen to the full podcast, click here.
When You Stop Walking…
I asked both of my sons about the most important things we need to be sure we talk about during this livestream. The first thing my 16-year-old said is “when you stop walking,” and I agree – that’s a huge one.
My sample sizes is small – I can only talk about my own family’s experience – but we’ve had two of those go rounds so far. My first son stopped walking at 12. My second son stopped walking at 15. They have the same exact deletions, but very different kids, very different experiences. It’s taught me that even though I’m a mom of teenagers with Duchenne, they are different people.
For my first son, I was new at this. I was very interested in trying to help him walk as long as possible and I probably pushed him too long. He was trying to keep walking probably more for my sake and he was actually very relieved when he was finally able to be in a chair full time. He just felt safer.
My second son would not use a scooter or anything to help him when he was getting ready to lose the ability to walk. He was falling all the time and was really stubborn and didn’t want anyone to help him – completely different from his brother. I was begging him to use the power chair and he would not until he was absolutely not able to walk anymore.
So yeah, my second son mourns not being able to walk much more than my first. He still talks about waiting for an exoskeleton so that he can get up and walk away. He threatens that when he’s mad at me. My first son does not talk about an exoskeleton.
So, I come back again and again to: “Sure, they have Duchenne, but they’re different people. We are all human beings, and we all experience this disease in our own way.”
It’s important to recognize not only when someone is physically ready to transition to a chair, but when someone is psychologically ready, too.
You know, I remember going to clinic and the people at the clinic would offer scooters and wheelchairs and my kids either did or didn’t listen to them. Some of this transitioning just depends on the personality of your kid.
If I were to do that over with my first son, I would have allowed him to use the chair more gradually, because he was anxious. When I look back in retrospect, I had some ill-conceived notion that I could somehow keep him walking longer if I made him walk longer, and that was not true.
There’s also a component there with school. If they’re in a school, the schools will weigh in, because they’ll be thinking about safety. I remember my younger son, they wanted him to use a scooter to cross the hallway, so he wouldn’t fall. He would ditch the scooter and he wouldn’t listen to them. So, yeah, again, it depends on your case.
There’s no harm in letting somebody use a chair more gradually, if it helps them feel comfortable, if that’s the kind of person they are, and it helps them. It really depends on what their personality is.
Fear, Grief & Relief
The other thing to recognize is that there’s often a sense of fear and relief around when somebody is getting ready to stop walking. It’s really a very scary time.
I think sometimes somebody doesn’t want to lose their sense of independence and so they try to walk, but they’re wobbly and they fall, and they can be knocked over easily. There’s fear in those things when you’re wobbly and you can be knocked over and you can break bones. All of those things have happened in my family with both of my kids and that’s really tough.
There’s also grief in losing that sense of who you are when you want to be a person who’s ambulatory. So there is grief in not having your body work the way you want it to work anymore – and having that be a permanent thing. There’s no way around that not being grief.
There is also really relief in starting to use a chair that then gives you stability.
So there are all those aspects to it – fear, grief and relief.
Their World Gets Narrower
What I have seen and witnessed as these kids are growing older is the person usually feels like their world kind of gets narrower.
Their friends or family members that are the same age, they move in different directions. Maybe friends have girlfriends, or get driver’s licenses. Maybe friends have the ability to go apply easily for any job they want. Maybe someone who was once a good buddy has now become a star on a sports team.
My sons both have talked about how they’re aware that people see them differently in a chair – especially in high school. I think they feel like the adults accept the chair more readily. I think they feel like teenagers are a little bit more put off with a chair.
I think there’s grief in what starts to feel like a greater struggle of still continuing through your high school years, still trying to carry on your academic load but maybe feeling a bit more isolated, too. Feeling like people are experiencing more physical independence while you’re experiencing less. So those are some of their realities.
When the Heartache Hits
That all sounds very sad and honestly, it is very sad. And when we really start to look at the situation, I think, “Well, what do you do about that?” I’m a big believer in saying, “What’s the reality? Let’s start with the reality. Let’s not sugarcoat it. Let’s understand it, and then let’s build from there.”
I remember that first year he was in a wheelchair, my son was part of a group of buddies, and they had a sleepover at a friend’s house. They didn’t invite him because he couldn’t get in the house. I remember the sorrow we all felt. Unfortunately, these things happen, and it would be wonderful if extended family and friends were just informed and on the same page and always willing to adjust. But I don’t know any Duchenne family who has had that experience where everybody in their environment adjusts.
I think oftentimes that we need to help our teenagers with Duchenne create different kinds of networks than the ones that they started with. Oftentimes, they lose those childhood friends and the childhood networks that they once had. We may need to find more appropriate kinds of activities for them, like things that they can do with youth groups, maybe.
For example, at church, our family has done workshops, where we have able-bodied people experience what it’s like to try to transfer into a chair, and to try to go through some of the daily activities as my boys do to gain awareness, to try to help them understand. But I know it bothers my younger son when little kids stare at his wheelchair because they don’t see a wheelchair every day. So as a teenager, that’s something that he’s sensitive to.
I think we need to know ahead of time that some people just aren’t going to adjust for us. We should be prepared with our bag of tools to see what else we can do when the heartache hits… because there’s been loss, because there’s been sadness.
It’s so important to really contemplate: How do you still create an interesting life when parts of that life don’t function anymore, when they are no longer what work?