For the first 16 years of my son Ben's life, I held out the hope (and for quite a while I actually had myself convinced) that Ben was one of the "exceptional" kids with WS &endash; One of the children who the researchers would request to see for their studies of "high functioning individuals with WS."
In reality Ben is a "classically average" individual with WS. He has nearly all of the 'classic' characteristics of WS &endash; typical facial features, small stature, severe cardiac issues, sensitive hearing, overly friendly personality, good verbal skills, horrendous spatial skills, good musical ability and (by school measures) an IQ in the low 60's. For many years, not unlike many parents of children with disabilities, I worked hard to convince myself that his IQ number would surely be higher if Ben was tested by the WS experts... and if he had better teachers... and if he had an aide who could work with him in a regular education environment... and if we could finally find the medication or magic formula that would help him to focus, and...I had a million of those reasons.
And then, in preparation for high school, I took Ben to be evaluated by the WS experts...and learned that the school psychologists were not far from the mark in their evaluations. And that's when I finally began to take the facts to heart. It was time (way past time actually) to recognize and get comfortable with the knowledge that Ben was, in fact, not going to be a participant in those studies for "high functioning individuals with WS." Not because he wasn't a great child, with a host of special qualities, but because even with those strengths, he was, "cognitively speaking" an average child with WS &endash; a child with moderate cognitive deficits.
Does it matter? Has this realization made a difference in my life? Is it worse? The answers to those questions are Yes, and No, respectively. It matters because I'm looking at Ben through different eyes, and it's made a difference in that I'm more comfortable with who he really is. But no, it's not worse. In fact, in many ways it's better. The pressure is finally off &endash; for both me and Ben. I continue to work hard to help him achieve his full potential, but I have much more realistic visions of what that potential really is. And in the meantime, I have a much better appreciation of his strengths &endash; knowing that in some ways they are even more special in light of his "very real" weaknesses.
I hope that each of you will be able to look at your child with WS just as you do your other children, grandchildren, or nieces and nephews &endash; as children who, regardless of measured cognitive abilities, or physical weaknesses, or Williams syndrome, have more to give than most of us will ever realize &endash; that its not necessary for them to be on the outside of the bell curve. They are wonderful just the way they are!
&emdash; Terry Monkaba