‘Unreasonable mother’ shapes a world that embraces disabled children

When my son was born, I picked the name Alexander because the baby names book said it meant “Leader of Men,” and I was sure he was destined for greatness. Here’s how I pictured it: He would be very smart, win awards, go to a prestigious university and maybe even be famous.

At 5 months old, he still cried constantly, couldn’t eat or sleep and wasn’t really developing. And a heart condition was detected. His pediatrician suggested we have a geneticist look at him. It might be Williams syndrome, he said.

I didn’t know enough to be frightened, until I went to the hospital library where I worked and looked up the definition. Of the 25 things that could accompany Williams syndrome, seeing the words “mental retardation” shattered me the most.

Alex is Alex. He is an accomplished musician who aspires to be a DJ. He is in his high school musical, has had starring roles in Whole Children’s theater productions (everyone who wants a starring role gets one) and studies voice through a program at the University of Massachusetts.

He recently gave a talk to a group of delegates from Azerbaijan who came to the United States to learn ways to improve their educational services for people with disabilities. He made such an impression on them that when I traveled to Azerbaijan with a group of professionals to support their work, a delegate said, “Alex is known all over Azerbaijan.”

So in a way, he did become famous.

CNN