Rachel's world:

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She doesn't say it. The cottage cheese is falling off the spoon because she is turning her arm back and forth to admire the morning sun and shadows moving across it. She likes that game, one of her private games that we can recognize, but can't share. It makes her smile. She smiles her secret smile, the expression that makes you think she has just thought of a mischievous trick, but she won't tell anybody until she's played it.

We have a picture of her first real smile. I am holding her in the shower during the summer she turned one. I can see that picture in my mind at any time. That smile brought the sun through the dark clouds for us. We had worked hard to help her, but we didn't know if we had the strength of character to love and live with a child who never smiled. Some people do. God didn't require that of us. That day, she smiled and we cried.

Now she smiles a lot, most often if you tickle her or if she's jumping on her trampoline, riding her tricycle, or doing something else that involves "major sensory input," as her therapists say. She also smiles sometimes when she hears a funny noise that she likes, like the pig grunting "touchy" in Beauty and the Beast. But she doesn't smile much at things that make most kids smile, like playing peekaboo.

"Rachel, would you like some Crunch?"
"Cwunch, peese."

She can talk. She likes to use her language for a purpose. She was the star of "meaningful communication" when she was in the special education preschool class for kids with autism. When Rachel "talks," you know she is trying to tell you something, even if most of the time you don't know what. We wonder if there are other ways to help her converse that don't rely on precise control of small working parts, like a tongue and lips. We offer her those other channels, but Rachel seems to prefer barking it out with the spoken word. If she says something often enough and takes the uncomprehending listener by the hand to the place or object, we feel like we understand what she's trying to tell us. But there are still plenty of times when she repeats herself with enthusiasm and a strong desire to let us know and we just don't get it. Eventually, she sighs and moves on.

Some parents of children with disabilities grieve continually for the loss of the normal child who might have been. I don't feel quite that way. Rachel is the child she is, and I don't think much about who she might have been. But when she sighs and gives up because I don't understand, then I grieve.

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