Thursday, July 4, 2013
This book is by George Estreich. It tells about the first dozen years or so of his journey with Laura. He makes a very good argument for just thinking of her as Laura, as opposed to a child with Down Syndrome, or a Down Syndrome child, or a child with Down's Syndrome, or anything other than Laura. It would be worth reading if it only told about their lives, but it also has some good food for thought. He hopes that it will come that we have no more need or desire to mention how she is different in her number of chromosomes than in her hair color. I couldn't put the book down ( I assume I'm able to say that if I ate supper between the time when it came in the mail and when I finished it). There is interesting information about Dr. Down, the Special Education process, and what the extra chromosome does (effect how proteins are manufactured in the body). There was a short passage on the meeting after the School Psychologist tested her. Here's a quote: "I knew nothing about Down syndrome except that it was bad, and that it meant Laura was different from me. I no longer believe the first - Down syndrome is simply Laura's way of being human. As for the second: Laura is different, but the differences are superficial. This may seem an odd assertion, since the extra chromosome pervades her, and its effects texture our days. And yet these altered forms, eye and face and word, have come to contain and absorb what I know of love. Or love learned to alter itself, to accommodate the forms. She is no less my daughter, no less a person, for having an extra chromosome."