The excerpt below is from The Duchenne Life episode Independence, Interdependence and Co-dependency. Thank you to our guest Lauren Fritz, mother of two adolescents with Duchenne and also private practice therapist. Click here to listen to the podcast.
I think so many of our young men feel like somehow they’re not doing life right, or they’re not achieving what they’re supposed to achieve.
But I think our definitions of what adulthood looks like are changing. You know, so much has changed since the pandemic. People can go to college virtually. People can work virtually from home. So much has changed.
For young men who want to live independently with caregivers or go to college with caregivers, by all means, do that. I just don’t want anyone who still chooses to remain home or chooses to remain with parents to feel “less than.” That’s what I don’t want.
So I’d like to open up space to discuss a different model for our young adults and men with Duchenne. The model of being together that I think works really well is something called interdependence. That’s this idea of being mutually reliant on one another in a way.
I think we really need to open our eyes to think about this because I think so many times that we as a society will look at somebody with Duchenne as the person who needs the care, as people who need to receive. We forget to look at what they give.
And they give an awful lot.
In my house, a couple years ago we made a decision to move my practice home and to become my older son’s primary caregiver for a variety of reasons. It did good things for my spirit and for who I was as a human being and it also did good things for my son, Jake.
Jake and I look at the things that he brings me. When I sit with him in the mornings and we eat breakfast, that’s one of the most common, contented times of my day. When I think about my boys, I have intellectual conversations with them that I don’t have with my husband. Their senses of humor are sharp and wicked. They are my IT people in the family. There are just things that they bring that no one else does.
I’ve learned the whole way through that I need to stay physically close to my kids. When they were younger, if they fell over I needed to be near to pick them up. I need to stay close now, too. If my son needs help eating or turning or whatever, I need to be the physical extension of his body in many ways. So I’m not going to fight that and I’m not going to pretend that somehow I don’t need to be close by when I’m his caregiver.
The Family Unit
I think we need a new definition of what a family system looks like when there’s severe disability involved – at least physical disability.
I know when my sons were first diagnosed, we were given these terrible statistics of what things would look like: parents divorced so often and we really needed to put enough time into date night. And you know the bejesus was scared out of us about all the terrible things that could happen.
Honestly, I think we tried to heed that advice for a while, but slowly we kind of morphed into what was needed. Our family is much more of a cohesive unit, so when something comes along – like Valentine’s Day just happened. Valentine’s Day is not a romantic holiday between my husband and I. It’s a family holiday that we celebrate between all of us and our pets. It’s a family affair.
We do things collectively as a family, much more beyond any of my other non Duchenne friends. We just do things collectively and it’s not bad. I like it.
So I think I first started to think about this idea when my kids were younger and I was trying to think of reasons to not stand out too much, but to stay close enough for the needs that I knew they had.
So I would do things like volunteer at Field Day. You know when there is a good chance that one of my kids might tire out, but I could sort of look like the other volunteers. Or my husband would volunteer at scouts, you know? So we we sort of look like volunteers, but we were just in the vicinity of our kids because we knew that they would need extra help. And we would blend.
I think we’ve been taught that somehow that’s not OK or that that’s wrong or that you’re again supposed to be autonomous. But when that can’t be autonomous and you recognize that you can’t be autonomous, why not buck the model?
You know, this coming weekend, we have some friends coming over. The parents and their college age son and us and my teenage son and my college age son, we’re getting together to play games. That’s not typical in our society. You know, typically college age kids don’t want to hang out with their parents, but we don’t care. We’re doing it because it’s fun. We’re doing it because my kids need that help and we’re doing it because we like each other.
I saw my husband do this in an interesting way, when we were at the hospital for clinic the other day. We were talking to our neurologist, who we know really well, just because we’ve seen her for 10 years or whatever. And he said to her, “Hey, Doc, how’s your family?”
And I thought that was so interesting because he was not just referring to her as our neurologist. He sees her as somebody beyond a neurologist. He cares about her beyond just what she’s going to do for our boy.
That’s a great example of this idea that we are all interdependent, we’re always building community around us and we’re interdependent within our community.