Sometime during the last year or so I discovered that Nat had started making this new face, where he drew his lips together almost like a kiss, and scowling a little, he’d tilt his head downward. When it first happened I was alarmed because — why did he feel he had to stop smiling or whatever he’d been doing? Had someone in his life been chiding him for laughing too much, being silly? This is where my mind goes, automatically looking for that hidden evil person in his life, who might be mistreating him and no one knowing about it. I have every right to go there, especially after this last summer when he came home with mysteriously fractured ribs. X-rays showed that this was not even the first time he’d had broken ribs.
I will never let go of that.
This gesture worried me, especially when he also would draw his arms straight down against his body. This made me think he was stiffening his body for no apparent reason. It looked so odd that we began to worry that he had catatonia. We took him to his neurologist, to a new psychopharm, and started him on new meds. I plunged into the world of autism catatonia, trying to learn at lightning speed about this terrible condition.
By now we know that he doesn’t have autism catatonia. We know that some of this pulling-inward was likely due to the pain of the first fractured rib. He’d also be very still, which makes sense if you consider he was likely in great pain.
This is all very confusing, I’m sure. Sometimes his stillness and stiff demeanor may have been about rib pain. But sometimes this gesture of pulling himself into seriousness is just that, he is trying to let you know that he is paying attention, he is riveted, focused.
Once his ribs healed, and I knew about this latter, newer possibility, I began noticing it in all sorts of situations. At his ISP, he’d lean forward, lips together, listening as hard as the worm in Dr. Seuss’s The Big Brag.
Another thing I discovered since he’d come home was that his hands, his palms, were as rough and knotty as bark. I offered to rub hand cream into his hands, because of course he would never know to ask for it. Autism freezes his will, or something like that. But I don’t want to think about that now.
So I would rub Eucerin into his hands every night. I usually forgot until he was in bed. I’d say, “Nat you want some hand cream?” and he’d say, “Yes.” So I’d pump out a dollop and just rub it into his hands, in the dark. I’d do what manicurists do: pull each finger, rub the fat part of his palm.
Over the months that he was home, of course, his hands started to soften. And I noticed how eagerly he would agree to the hand massage when I remembered. I also noticed that he’d go very still and draw his lips together, as if trying to experience it with every sense he had.
I, too, would soften inside because he was allowing me to touch him, he was actually getting pleasure from my touch. That had not happened for a long, long time. As a baby he had reached for me, as a toddler he had wanted me to pick him up “I pick you up,” he’d say. But really so much of his “affection” as a grown up was just kind of letting people kiss him or hug him. He does not like hugs for the most part. Ned and I joke about getting “chinned” by him; he lets you hug him but shoves his chin sharply into your shoulder while you’re doing it.
But the hand cream is pure enjoyment; he’s not being polite, he’s melting. Last time I did it was just a few days ago. He was in the bathroom, getting ready for bed, and giggling to himself. I remembered the hand cream, and came upstairs to put it on him. As I started pressing it into his hands, he suddenly drew his mouth into his serious face, and impulsively I kissed him. While I was kissing him, he burst out laughing, totally into my face. It made me laugh, too. I kept my lips on his scratchy face and we just laughed onto each other’s cheeks.
How long does an autism mom wait for such moments? Completely unprompted, non-rote, natural evidence of affection. Because yes we do need it. Our hearts get roughened by the years of all the necessary effort, the putting-my-child-first, the letting-him-be-who-he-is. Autism parenting has grown such muscular mothering that we forget how much we crave a simple sign. And there it was, his startling, sudden joy in my presence, what we were experiencing together. A balm for my soul.