I keep going to an image of Nat from yesterday when he was home visiting, of him sitting on the couch across from me, watching. Waiting. He was waiting to be told what would happen next. If we told him nothing, then nothing would happen. He would just continue to sit, watching, waiting.
I see this image of Nat, perched, unoccupied, and a softly creeping sadness wraps its way slowly around my heart and throat. I try to move away from it, to detach my body from its long sticky reach but it is there nonetheless. I have been running from this picture for two days now, maybe longer. In the middle of organizing my third autism parenting book, my creativity chokes and withers in the face of Nat and his expectant eyes, as wide and blue as the sky around us. I am haunted by that open, trusting look he gives me. Don’t write that, I hear. Write me instead. Tell me what is, what I am doing. What is next.
Horribly, I ignore him sometimes. I can’t do it. I just can’t always do it. Just as when he was a little boy and I was told to interrupt his self-stim talking and “give him a model of something real to say,” how horrible and judgmental and huge a task. How utterly unachievable. I felt/feel that I must live for both of us. Just like when he was a baby growing inside me. Eat for two, breathe for two (as the Natalie Merchant song goes). It is an incomprehensible task.
I’ve been raised (growing up with Nat, that is) to believe that he needs. Constantly. That it is up to me to give him something. A frame within which to live. Structure. “They” need structure. So where does structuring his day end and turning him into my puppet begin?
I think that what is making me sad about this staring, waiting Nat is that this passiveness is the disability. This is the thing I can’t fix. Because, thank God, he can breathe on his own, eat on his own, walk, communicate (somewhat), and even work. There has been enough intervention and education and especially love and work to help get Nat to be able to do so much. But it feels like there is no amount of anything that can get Nat to stop waiting for others — all of us who have trained him to listen to us and learn from us — and just go ahead. That mechanism comes from within and I don’t know how to fix it or how to stand back and let it — be?