In the six years since I published a book about my son Jamie, Life As We Know It, a great deal has changed in Jamie's life-starting with his realization that there is a book about him. When I completed the book Jamie was only four, and had not yet entered the public K-12 system. But I did not stop serving as Jamie's recorder and public representative when I finished that book: I still represent him all the time, to school officials, camp counselors, babysitters and friends, to academic audiences, and to Down Syndrome Associations. I take it as one of my tasks to watch for important things he's never done before, as a way of charting and understanding the irreplaceable and irreducible little person he is, especially as he gets less and less little, and more and more capable of representing himself.

Jamie is now in his sixth year of school, having entered kindergarten in 1997-1998. In the intervening years he has not continued to perform at grade level (he is repeating...

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