Betty Vertin, who lives in Hastings, Nebraska, has three sons with Duchenne muscular dystrophy, the first diagnosed in 2010 at age 4 and the other boys within the following year. She shares how honesty, flexibility, and small compromises around orthotics can help families support their children while building self-advocacy skills.
Transcript
So I would say what it’s come to, wearing their ankle and food orthotics from the get go, from the time they are, like, 4 years old … it’s never been a favorite thing. And to be honest, we’re still not at a great place where we’re compliant with our AFOs.
They don’t like wearing them. If they wear them when they sleep, it messes up with their sleep. So we’ve compromised. We’ve talked it over with, you know, doctors as well. I will say one thing as a mom and caregiver, both when you’re in the room and the doctors say, saying, “How often do you wear your AFOs?”
I would really like if my children said, “Every night,” but they’re very honest. And they say, well, “We never have, folks.” That’s difficult and it’s hard to swallow. Being honest with your medical providers is very, very important. So I’m thankful that they have that skill.
But we’ve learned to compromise: “OK, you don’t have to sleep in them. Can you wear them for an hour when you’re playing video games? Can you do this? Can you do that?” So I think compromise is a big piece of it.
I’m speaking for myself. I want my children to advocate for themselves, make important decisions for themselves. And it starts with little things like the AFOs.
And if it’s not something they’re going to be able to do or be compliant with, I think I’d rather them be honest with it and open with it so that we can go to plan B or C, and I know AFO is seen very minor, but I think you can take the same philosophy to other things. If it was not taking meds, not going to appointments, find a way that benefits your child or your patient.
