Williams Syndrome: Looking Behind the Smile

March 11, 2014

I work with a young man who has Williams syndrome (WS). To say that he is one of the most important and influential people in my life would be an understatement to say the least. While Williams Syndrome may be the first thing that some people notice about him, there are times when I have to remind myself that my friend has a disability.

Over the past four years I have had the privilege of getting to know him and other teens and young adults with WS at the Academy they attend and at a summer camp for teens and young adults with WS where I work as a counselor each summer. Through the years, I have watched them grow and learn, and they are no longer just people with Williams syndrome. Now I am honored to say that I know them all as friends, and Ben, in particular as one of my best friends and part of my family.

Each and every day is a new adventure for us. Whether we are meeting for coffee, traveling, or simply talking on the phone; not one moment passes when Ben doesn’t help and support me as I do him. One time when we were at a store, he greeted the cashier with his bright smile and usual, “Hi, how are you?” As we finished checking out, Ben carried on a conversation with the cashier first telling her that he has a disability called Williams syndrome, and then asking if she liked the Beach Boys (his all-time favorite band). After the cashier answered Ben she looked at me and said, “You’ve got someone pretty special with you today.” She was right. I did. And I have learned that “pretty special” is a trait that is common to everyone I know with Williams syndrome.

Most individuals with WS are “the glass is half full” types of folks. Ben, in particular, is the most optimistic, hopeful, and candidly honest person I know. He is very observant, and has a unique way of expressing what he sees. One Saturday when I went to meet Ben for lunch, I came directly from a Pilates class and naturally didn’t have make-up on. One of the first things he said to me was, “Hi Eleni, you look different.” All I could do was smile and laugh, as I immediately knew what he was talking about. I then explained to Ben that I don’t always wear make up, and he responded with his bright smile, “It’s ok, you still look beautiful.” Had that exchange been with anyone else, I’m sure I would have been embarrassed or upset at their “rudeness” at calling attention to my lack of make up, but from Ben, the comment was clearly just an observation, and his follow-up was as sincere as any compliment I have ever received.

In addition to having wonderfully optimistic attitudes and outlooks, many individuals with WS (Ben among them) are talented and gifted performers; fearless when they take the stage. The difference between performers with WS and most performers is that those with WS perform not for themselves, or so that others can see how good they are, but to make others happy and delight in seeing that effect among those in the audience. Ben [puts it this way], “I love performing, it’s my thing, I love performing for people, and I love their reactions.” Ben lights up when he steps on stage and immediately captures the hearts of everyone in the audience.

I have seen Ben perform songs such as “Razzle Dazzle” and have the audience laughing and smiling as he sang and danced with the utmost joy. I have also seen him perform songs like, “Send in the Clowns” and bring the audience to tears. However, that doesn’t come “naturally.” Ben practiced for months to learn to sing without a smile on his face and to express “sadness,” and required constant reassurance that the tears that he saw on the faces of his audience were tears that showed the quality of his interpretation, rather than sadness. And even with that, at the end of the song, Ben bowed his head and counted to five and then immediately threw his arms up and burst into the biggest smile you’ve ever seen– seemingly bursting at the seams having been required to hold that natural joy or performance within him for so long.

When I was asked to write about Williams syndrome and how working with someone with it has changed my life, my first thought was that I cannot remember what my life was like before I met Ben, and all the other amazing young people with WS who have come into my life over the past four years. They have taught me to be hopeful, to keep trying no matter how difficult something might be, and to take risks. Most importantly, I have learned from them that I should never be afraid of asking for help, and above all, to always keep smiling.

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