Life with Williams Syndrome: Interview

We had a conversation with a woman whose son attends our high school about the complications and impact William’s syndrome has on her son’s life. Here’s what she responded with:

“What is everyday life like for Garrison?

A: He is very anxious about noises (especially dogs and children screaming and crying) in his environment which is very distracting to him and keeps him from staying on task and doing a lot of things. He has difficulty with fine motor tasks and certain concepts (especially math and time) and needs assistance with personal care. He sees himself as having many friends, but no one ever calls or wants to hang out with him, so he is quite lonely at times. Garrison spends the majority of his day listening to music or watching videos which makes him happy; however he does this by himself because he likes to rewind things over and over again (a stimming behavior). He has a need to greet and get to know anyone who will talk to him, and has no judgements or prejudices (which means he can easily be taken advantage of and has no fear of strangers).

Is there anything William’s Syndrome prevents him from doing?

A: Garrison is not prevented from doing anything because he has WS. It's his lack of abilities, sensory issues, and anxieties which prevent him from doing certain things.

What was it like finding out he had William’s Syndrome?

A: Devastating and hopeful and the same time. We didn't know what was wrong with him, and when we finally found an answer, at least we knew where to go from there. It's difficult knowing your child will have so many challenges ahead of them.

How old was Garrison when he was diagnosed?

A: Around 2 years old.

What kind of testing, if any, did Garrison have to go through before being diagnosed?

A: We did a Child Check with the county which recommended we see a speech therapist, who recommended a certain pediatrician, who suggested he get a FISH test or micro-array analysis which came out positive for WS.

Are there any organizations that you are involved in as a family that could help others cope with having a child with Williams Syndrome?

A: The Williams Syndrome Association has a website, Facebook, list serve, conventions, and regional events for families with WS. There is also a Williams Syndrome Clinic at Nationwide Children's Hospital.”