I remember my mother’s tears, and I remember seeing my baby brother and thinking that he was perfect, although more yellow than I thought he would be. Then the mantra, “Sam has Down syndrome, which means that he has an extra chromosome. It just means that he takes longer to learn things.” After all, how do you explain trisomy 21 to a three-year-old?
Somewhere between his birth and elementary school, Sam’s diagnosis became a part of my own identity. My job was to protect him and to teach him what I knew about the world. When my first grade teacher asked me for facts about myself, my answer was that I had a brother with Down syndrome. And when she wrote “Down’s syndrome” on the board, I told her that “Down Syndrome” was the preferred spelling.
I occupy a unique position – I have a brother with Down syndrome, and I study mouse models of Down syndrome. I know what it means to have a family member with an intellectual disability, and I know how to read the scientific papers describing the biological causes. Where scientists can approach disorders as molecular puzzles, I am personally invested in the findings. I’m hoping to use this blog to explain scientific papers with relevance to neurodevelopmental disorders using common language. Also look for more articles about adaptive cooking tools and using picture recipes to teach cooking skills!