There is one other girl in our small town with Rett Syndrome. I've been hearing about her - she's 10 or 11 and our OT works with her. We went to a birthday party today and apparently this other girl is the cousin of the birthday girl's mom. My first clue it was her was the hands - I'd been told they were stuck in the fetal position and I saw hers were.
I didn't even talk to her parents because I didn't know what to say. What I wanted to do was ask them what she was like when she was Riley's age. It's hard to relate, I guess. Riley is very different from this girl and who knows what she'll be like in 7-8 years.
It did make me feel a little better though. Lately I've been thinking about what it's going to be like after Riley isn't a cute little 2-3 year old anymore. But this other girl looked so sweet sitting in her mother's lap, and it didn't look strange to me at all to see her mom carry her out of the building. I have two other kids who are always on the go and never want to sit on mom's lap for too long so I guess one positive is I'll always have a little snuggler with Riley.