The Gregarious Brain (Williams Syndrome)

Nicki Hornbaker, born with Williams syndrome, prepares a cartwheel for her mother.

If a person suffers the small genetic accident that creates Williams syndrome, he’ll live with not only some fairly conventional cognitive deficits, like trouble with space and numbers, but also a strange set of traits that researchers call the Williams social phenotype or, less formally, the “Williams personality”: a love of company and conversation combined, often awkwardly, with a poor understanding of social dynamics and a lack of social inhibition. The combination creates some memorable encounters. Oliver Sacks, the neurologist and author, once watched as a particularly charming 8-year-old Williams girl, who was visiting Sacks at his hotel, took a garrulous detour into a wedding ceremony. “I’m afraid she disrupted the flow of this wedding,” Sacks told me. “She also mistook the bride’s mother for the bride. That was an awkward moment. But it very much pleased the mother.”

Another Williams encounter: The mother of twin Williams boys in their late teens opened her door to find on her stoop a leather-clad biker, motorcycle parked at the curb, asking for her sons. The boys had made the biker’s acquaintance via C.B. radio and invited him to come by, but they forgot to tell Mom. The biker visited for a spell. Fascinated with how the twins talked about their condition, the biker asked them to speak at his motorcycle club’s next meeting. They did. They told the group of the genetic accident underlying Williams, the heart and vascular problems that eventually kill many who have it, their intense enjoyment of talk, music and story, their frustration in trying to make friends, the slights and cruelties they suffered growing up, their difficulty understanding the world.

This was written by a mother who had a child with Down’s Syndrome. But, it is applicable to the parents of any child born with a disability:

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

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