Robert continues to want to try to eat--this has become a personal goal for him. So this is a first. His whole life, other people have been deciding what's best for him, what his agenda will be, how he should perform, what should happen to him.
He keeps working diligently on what to us are unconscious, basic skills: opening the mouth wide enough to take the bowl of a small spoon, letting me press the bowl of the spoon down on his tongue, and letting the spoon slide out without biting down on it. He's doing much better, and he's working on suppressing his startle reflex.
I wish I could tell him that he was really going to eat a lot again, but the Kennedy Krieger people were pretty discouraging about his being able to do much more than accomplish tasting bites. We'll see, though. Robert is fairly determined. But he doesn't have good head control, can't swallow an ounce of something, and doesn't have a lot of complex tongue movement.
I want to see him take the spoon easily, and then progress from taking the spoon in my lap to sitting in his Tumbleforms chair to take it. Then we'll try taking a very small amount of applesauce.
I wish I could draw some connection to poetry here, but I really can't. It is lovely, though, to see him shift a little from spectator in his own life to actor and agent. I remember hearing Ellen Bryant Voigt speak at Bread Loaf in 2001 about children and language development and poetry. She argued the basic developmental line about language turning a child into a person--this was to make a larger point about poetry, which I forget, and the thrust of her discussion was about poetry.
I do remember thinking that she was wrong, though--as I think most developmentalists are quite wrong about the children that they study. Robert has always exhibited personhood, even without verbal skills. Eyes, gestures, signals, facial expressions all make language. To take the world and assert, as developmentalists do, that the only paths are the well-trodden ones, that 'normal' is a range of behaviors, progressions, and patterns, and to label as other, deviant, abnormal that which does not follow what you expect is certainly the antithesis of intellectual endeavor, the ultimate in deductive reasoning, the polar opposite of poetry and all of the capacity of language itself.
"There is no deformity but in monstrosity, wherein notwithstanding there is a kind of beauty, Nature so ingeniously contriving those irregular parts, as they become sometimes more remarkable than the principall Fabrick." Sir Thomas Browne