A hallmark of Rett Syndrome is the repetitive hand movements and loss of purposeful hand use. I've posted many times about Caroline's loss of hand skills (to see previous posts, please click on the "Hands" link below this post). Caroline uses an arm brace on her right arm to keep her hands away from her mouth and promote intentional hand use by disrupting involuntary movements.
Caroline's purposeful hand use has improved a bit over the last year. These days, Caroline can hold a small light object in her left hand for up to 2 seconds. She can also reach out and touch our faces. She attempts to give us hugs by "patting" our backs when we hold her. She can "swat" at some of her musical cause/effect toys. I'm grateful for these improvements, but I can't deny the devastating impact of the loss of this skill. Caroline can't explore the world on her own. She can't point to objects or images to communicate with us. She has to rely on us for help with basic skills like eating, dressing, toileting, and even playing with her dolls. But we do our best to "be Caroline's hands" for her.
Caroline's involuntary hand movements are constant while she's awake
Caroline playing with one of her favorite toys