Norm Simpson shares his journey as a father and caregiver to his son, Donovan, who lives with Friedreich’s ataxia (FA). He reflects on balancing love and respect, navigating tough decisions together, and the lessons learned from supporting Donovan’s independence while honoring his role as both parent and caregiver.
Transcript
So I’m Norm Simpson. From Yonkers, New York. I’m 62 years old, and I have a son, Donovan, who was diagnosed at age 6 with FA. We saw some differences with Donovan. And OK, so he was not going to be a football player. He’s not going to be a basketball player. But he was smart.
We played video games. We were having a great time. He was learning. And then, you know, things got a little bit more dicey. And so we ended up seeing the neurologist. And the neurologist then told us that we have Friedreich’s ataxia, and don’t expect 18 years.
But that being said, we then said, “OK, fine, then let’s live life as it is.” And so I started taking care of Donovan, both as a dad and as a caregiver.
In the beginning, he’s ambulatory, running around doing crazy stuff, and that’s all cool. But one of the things that we — we ended up having to deal with is his emotional response. And his emotional response is what got us in to see the neurologist to begin with, because the psychiatrist actually referred him.
And we were going through some difficult times. We were pushing heavily for education, and we had career plans. We had everything all streamlined out.
I mean, I had a whole game plan of what was going to happen and making him very successful. And all of a sudden that’s not happening. So now we’re like stuck, like, what are we going to do now? How do we adjust? And you know, that begins our journey because adjustment was what we had to do constantly until this day and going forward.
So in balancing the roles between being a father and a caregiver is not trivial. And it’s actually three sections, because it’s being a father of a child and then being a father of an adult.
So being a father of a child before they’re 18, you are legally responsible for them. I mean, this is your child in the law. And the state of New York requires me to take and make sure everything is perfect. So, OK, so that I get.
But when he turned 18, he was a legal entity now, and I was no longer responsible. He could make his own decisions. He could move out. He could go somewhere. I can’t stop him.
I’m his father, you know. I respect his wishes and try to work with him. But then the job of caregiving really kicks in because now you have an adult living with you. Legally, I’m not responsible for him. But, you know, morally, ethically, as a dad, yes, of course I am. You know, I’m going to take care of him. And I guess the biggest aspect that I can just share for me was respect.
We had to have respect on both sides, and some days that got tough, but that’s — that’s the goal. We always loved each other, but the respect sometimes got pretty tough. And when he wants to make a bad decision as a caregiver, it’s like, oh shoot, what am I going to do now? As a father? Yeah, of course I’m always going to have something to do.
But maintaining that respect has been what I do with him.
I’ve always respected his decisions, right or wrong. And I said, “Just remember that with every decision comes consequences. My job is not to make your decision have consequences. I’m going to be the one there to help you with the consequences when they come.”
Like he did the foot surgery. As he was a teenager, so he’s still kind of my responsibility. But it was kind of like, “This is not life threatening. Now, I understand you want to get better articulation so you can continue doing transfers and doing stuff. It’s still a surgery. It’s dangerous. I would prefer you not get it done, but, you know, just because of the risk management.
“But if you want to do it, we’ll support you on that.”
And it kind of took him back a little bit. But I think each of these decisions along the way has made him more independent.
He runs his own banking account, so I transfer the money when he gets to it into his banking account that the government helps him with. He manages it with all — he’s got, a spreadsheet with all his subscriptions.
I don’t even have that. I just, I have no idea what I paid for my subscriptions, but he’s got all that under control and he budgets and he figures out what’s going on and he cancels things.
He adds things and he moves things around. And occasionally he needs to ask for help. And it’s right there for him. And we talk about it. That’s my advice, is let these guys explore what they can and what they want to do. It’s their life. It’s not my life, it’s their life.
