One common symptom of Rett Syndrome is repetitive hand movements. Rett girls flap their hands constantly (it sure seems like they'd have some pretty buff hand muscles, no?) often at or near their mouths. Becca fits this symptom exactly. Coupled with her very poor motor skills, her hand movements makes it really hard for her to do anything useful with her hands. When she was younger we taught Becca some basic signs, including "eat" and "drink", and she's still able to sign both of these words, but that's about all she can do successfully. Becca also could pick up food with her hands, and even at one point started using pincer grasp to pick up food and small items, but she gradually lost that skill.
I wish we had some better videos to illustrate Becca's gradual loss of motor control, but at the time we were a little sensitive and only took very flattering pictures and videos of Becca, so I'll just have to re-cap with words.
This is Becca at about 12 months old. You can see here that she was good at holding on to things, and could use both hands. She had enough control at this point to bring food up to her mouth, and to hold on to something as long as she wanted. She would hold and shake toys, and really liked to hold things in her mouth. We were actually bad parents apparently since we let her drink her sippy cup lying on her back, but she could hold the cup by herself that way and we didn't really want to take that skill away from her, so :-P.
About this time (around 12 months) we started feeding Becca cream of wheat (mixed with ice cream) to get some heavier, caloried food into her (and mostly because it had more fiber than other foods we could find for her). She really liked it a lot. She would sign "eat" between bites, and end up getting cream of wheat on her hands (and the couch, and her clothes... cream of wheat is a horrible food to try to clean off of things, if you were wondering). She liked the way it felt and she would rub her hands together whenever she had cream of wheat on them.
After a little while it became sort of a reflex for her, and she'd flap her hands against each other whenever she was eating, even if her hands were clean. That was one of our big worries, since it sure seemed like something was wrong. But for a while it was just when she was eating, which technically could have just been a tick or something.
That same clasping movement started happening more and more often. Like you can see in the next video, it was relatively subtle at first, but she would close her hands repeatedly, and then bring them to her mouth.
She liked to bring everything to her mouth. We bought her an electric toothbrush because the therapist said sometimes if kids don't get enough oral stimulation they'll put everything in their mouth, which didn't help much, but at least we were cleaning her teeth better :-). The hand movements got worse -- very gradually -- and she started dropping things. If she wanted something, she'd reach out and grab it, pull it to her mouth, and then drop it after a second or two. She also stopped holding her own sippy cup.
By twenty months Becca couldn't really hold things anymore. Her fine motor skills were pretty much lost, but her gross motor skills had improved a little bit -- this was her peak, probably, as far as more broad gestures. She had a few weeks where she was even clapping! I'm glad we got to see that, even if only for a little while. She seemed happy to be able to express herself like that.
By two years her hands moved constantly and she couldn't really do anything productive with them other than mash big buttons on electronic toys. You can see ere where she tries to eat her birthday cupcake. She really wanted the it, but couldn't figure out how to get it to her mouth.
That's about where she's stayed since then. Her hands open and close constantly, and she usually tries to have one of them in her mouth. Every once in a while she gets them red and sore from sucking on them too much, but she's been better about that lately. She does still sign eat and drink, so I'm really glad we taught her those early on.
It's been hard to watch Becca lose skills like this, especially as we see other kids her age (and now her little sister, too) learning so easily. I don't think people appreciate what a huge miracle it is for kids to learn new skills so quickly and so often. Becca's little sister is a constant miracle to us as she just decides to pull herself up to standing one day or to start feeding herself or to walk from one piece of furniture to another.
Next time you're worried because your kid won't say "mama" or doesn't seem interested in walking or whatever, take another look -- I guarantee there's amazing things to notice that they're learning all the time. And if nothing else, be grateful that they hold onto the skills they learned six months before. You don't know what a big deal that really is.