In his 4th grade picture, Robert's face is still full, his cheeks are round and childish. In his 5th grade picture, his jaw line is longer, his face has thinned out a little bit. He still looks like a child, but his face is taking on the contours of adolescence. I confess he looks very handsome. I also confess that I don't know how to move forward from here.
Parenting a disabled kid, particularly a kid as profoundly impaired as Robert, seems to have everything and nothing to do with parenting a typically developing kid. I confess there are times when I'm not sure I quite grasp what it is that everyone else is talking about when they say, "parenting." Am I a parent, or a nurse? Am I a caretaker? Do I understand what Robert needs?
For most of Robert's life, my role has been restricted to trying to help him endure some sort of medical protocol that I would rather he not have. But I put on my cheery or my empathetic or my comforting face, knowing all the while that I am being asked to lie. Because it is going to hurt or it's not going to be pleasant or I have to believe someone else myself that this procedure really is going to make a difference. So I am often the Angel of False Comfort, shrinking mentally behind what a 'parent' is apparently supposed to do: comfort her child under any and all circumstances and say it will be alright.
This creates a sort of distance: here I am in my body, just fine; but there he is in his body, not so fine, the body that I made myself for him. He is me and not me.
On the other side of this, I am unbearably close and intertwined with him on an emotional level. I know what he thinks, I interpret him to the rest of the world, I write him, as it were, upon the psyches of other people. Other people gradually take my lead and start to write his person for themselves.
This is how he becomes independent, as much as he can be independent: I take the lead. And he does quite well at school without me--I even try to stay away as much as possible. I'm proud of him for that.
But adolescence is the time when he should start to take the lead. And I'm not sure how he's going to do that. The kid's a piece of postmodern poetry: most readers aren't willing to leap the gaps, accept the white space as meaningful, wander thoughtfully amid the disjunctures.
I am convinced that 'handsome' is a language, though, in and of itself. It's served him well this entire time because people continue to be drawn to him. Robert has been doing better in movies lately, and we've even made it through a few recently that have had interludes of 'sad' music. For most of his life, Robert has cried hysterically (out of control hysterical) at slow tempo music. I've been sitting with him through these awful kids' movies that are endurable only because I can see the pleasure on my kids' faces--but sitting with him, whispering in his ear that music is a language, and it's saying to us that these people really like each other or that they're worried but everything is going to be OK.
Language, lies, language--a series of signs, a forest of representations, the endless attempts to close the gap between res and verba. There are people who believe only in things and feel language to be a lie. There are people who believe only language exists and exists to articulate a world that is an illusion. Then there are people like me, sitting in a small boat in the middle of a lake, wanting to row toward two shores simultaneously. If I could find the means to expose the reality of what I see--the basal ganglia is like that rowboat, ferrying the mind back and forth between what it can touch and what it can articulate.