Lila Bird Allen is the mother of Jamie who is 5 and has ataxia. Since so much time and energy are spent going to appointments Lila focuses on doing things they can enjoy together.
Jamie’s first diagnosis was at age 3 but they thought it would be temporary. After a while, they realized he was not improving, and we were sent to a neurologist. The doctor did extensive testing of over 75 possible causes and we received the diagnosis of Progressive Cerebellar Ataxia.
We like to garden and read together. We love swimming because it’s something Jamie can participate in easily. A lot more of our life involves planning before we do anything. Jamie wears out easily so we can’t do anything that takes a while and he’s lost his ability to walk without assistance, so we have to make sure where we go is accessible.
We try really hard to juggle his needs with not neglecting our older son who is very independent. We can’t really take a lot of trips and much of our time revolves around therapy, hospitals, and doctors. I’ve learned a lot about being a parent of a kid with disabilities. I’m a special ed teacher but it really changes your perspective when you’re the parent. I had never fully appreciated how incredibly difficult it was to manage therapies and transportation.
Explaining to people that there isn’t a cure is frustrating because they are so distressed by that. It’s hard to keep myself from dwelling on that. What I have learned works well is to give your person as much independence as you possibly can. And try to respect how hard this is for them – don’t give up!
Thank you, Lila Bird Allen for sharing your perspective as a caregiver. You have shown us that supporting independence as well as maximizing the time you spend doing activities that can be done together can bring happiness.