I tell people Aaron is not just my son, he’s my universe! He is 40 years old. He was one of the first to be diagnosed. He has had many therapies that have ultimately helped him. He is funny and bright in so many ways.
What is your favorite thing about him?
Although he does not read or write, his learning has never plateaued. Something new flies out of his mouth every day!
If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?
Although it is sometimes very rough to raise a child with Fragile X, and behaviorally it is often quite a challenge, stick with appropriate education and coping skills. The end results can be huge.
What is your advice for newly diagnosed families?
It seems overwhelming, but it’s not. Be an advocate for your child. Make sure he or she receives all the therapies and love available. Change is very difficult as well. Keep a set schedule at home if possible. (ex: family sits down, together, for dinner every night).
What do you want your community to know about Fragile X?
Our community has many services for the disabled. As a result, seeing (or hearing) someone who is not like everyone else is the norm. People smile and engage!
What advice do you have for parents/caregivers who are considering participating in research studies?
This is so important. Years ago, when Aaron was diagnosed, the only thing anyone could tell is that it was not degenerative. Although that was a relief, it gave us no information about behaviors, etc. Information was gleaned from Aaron’s generation.
About Faces of Fragile X
We asked parents, caregivers, and others to answer a few questions about their loved ones with Fragile X. These are the Faces of Fragile X, and This is Fragile X. If you would like to learn more about Fragile X, start here.