It's called "Spelling Love with an X" by Clare Dunsford, and if you haven't read it you should because I'm only on page 28 and it's already made me cry once and made me think of things I want to write about six times.
The boys' bus driver asked me what book she should read, if she wanted to know more about Fragile X. I gave her "X Stories: The Personal Side of Fragile X Syndrome." I read it shortly after the boys' were diagnosed, and it horrified me. I don't think I was ready for it. It's a whole lot of realism.
That was 6 years ago though, I think I'll have to try reading it again.
What's your favorite special-needs themed book?