A year ago, I read a book by Michael Berube called Life as we Know It. Berube is a professor of English, and his son Jamie has Down syndrome. His book contains philosophical and practical reflections about Down syndrome in general and about Jamie in particular. In one chapter, Berube discusses the sociology of Down syndrome. He explains how our "scientific" understanding of Down syndrome has changed over the past century. For example, parents who had a child with Ds 100 years ago were told their child would have an IQ between 20 and 40, or be "profoundly mentally retarded." (An average IQ is 100, by the way.) They were told their children would never speak or read, never solve problems, possibly never even learn to walk. By mid-century, parents of children with Ds were told to expect an IQ between 40 and 60. Now, with Penny, we are told to expect an IQ between 60 and 80. Who knows what doctors will be telling parents of children with Down syndrome in another thirty years?
President Bush speaks about the "soft bigotry of low expectations" when it comes to children from low-income families. How much does the same bigotry impact Penny's growth? This simple progression of IQ expectations has helped me to give up any attempt to predict Penny's limits going forward. When Penny was born, many of the expectations that I didn't even know I had, rose to the surface and were shattered by the words "mental retardation." And I thought—will this child talk? Read? Die young? Over the next few months, I reset my expectations. I came to peace with the idea, or, as I then thought, the scientific reality, that though Penny's intelligence would be limited, her spirit could soar. I grew accustomed to the thought that Penny wouldn't be "book smart," but that her personality and her "EQ" or Emotional Intelligence Quotient, would be off the charts. And that seemed fine, even somewhat exciting and good, to me.
Now, as Penny keeps pace with many of her "developmental milestones"—learning her letters and colors and shapes and numbers and answering questions and singing along in the car—I have had to adjust my expectations again. And this time, I say, who knows? Who knows if my child will join a book club or love poetry? Who knows if she'll sing in a choir or dance in a recital or speak in public? Who knows if she'll drive a car or get married or have children of her own? Who knows if she'll have a best friend or a boyfriend or sibling rivalry?
I don't know what she'll be able to do, but I do now hope for these types of things. I don't think my expectations are now unlimited. I think I understand that this extra chromosome of Penny's will slow her down in particular ways. But I'm also no longer willing to trust the experts who tell me exactly how she'll be slowed down, or to what degree. I'm willing to wait and see, and I expect that over and over again, I will be surprised, and delighted, by my daughter.