I found this three days after my daughter's diagnosis and I literally couldn't sleep until I read it. It's the first thing that felt like it was written FOR me, not AT me. The chapter on genetics helped me stop blaming myself, and the doctor question list got us through our first specialist visit without freezing up. I've already sent it to both grandmothers.

It's fine. I appreciate that it's in plain language, and the symptom table was genuinely useful. But I wished it went deeper into treatment specifics—it felt like every section could have used one more paragraph. Still, for a first 'what the heck is happening' read, it does the job. Not a bad place to start, but not the last book you'll need.