Susan's Blog

Tuesday, February 14, 2017

Go Ahead, Laugh in My Face

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. OLYMPUS DIGITAL CAMERA

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.


Wednesday, February 8, 2017

A Perfect Storm is Roiling Disabled Students

Here is my latest article in WBUR’s Cognoscenti Column, on the perfect storm of political nightmare roiling students with disabilities. Add to this icy mix Jeff Sessions who describes the ways in which IDEA and disabled students are burdens.

Wednesday, February 1, 2017

How Green Is My Natty

I’ve been here before. A fiery fissure breaking through my heart, Richter scale 6-8, the pain of saying goodbye to a son. This feeling is familiar territory with motherhood. But with autism there is an additional darkness in the chasm. My oldest, Nat, is 27 and autistic, and he is leaving today for a group home.

I spent the morning, and the day before at those home accessory stores, lost in a fog of pastel household goods and women, glassy-eyed like me, stroking carpets that hung like a row of furry tongues and other items they did not need. I was shopping for Nat’s new room: towels, bedside table, curtains. The only guidance I had from him was the word, “green,” in answer to my question of what color he wants in his room. And I was lucky to get this tiny chip of information, real information, from Nat in his otherwise barely intelligible symphony of sounds. I say symphony because his self-talk is so musical, rising and falling like a nursery rhyme, yet as complex as Beethoven’s Ninth.

In the store, I found myself looking at other colors, though. How would orange be? He likes his orange Gap shirt. Or yellow? He wears yellow tee shirts all sunny summer long. But does that mean that this room should have those colors? He said “green.” But still, there I was, wondering about the orange pillow, the splashy yellow dust ruffle. Always wanting to meet him where he is and pull him into more. Pull him to me. A la Greenspan/Floortime. Build that bridge, tote that barge. As if I am somehow the example of where he should be. I am so not.

I wandered the aisles thinking of Floortime, having thoughts like, “will they know him? why does he want to go, because he thinks he’s supposed to go, or because he wants to?” But mostly I felt like apologizing. Yeah, I’m really sorry for not being absolutely certain of what to do for you, Nat. I’m so fucking sorry that my body did not equip you with the easier, neurotypical DNA, those mainstream building blocks, that ladder to independence. You will always need others to watch out for you, and it can’t be me forever, and so I need to find others, I need to get you used to others. But Goddammit, there are others out there who are stupid or evil. Or indifferent. Lazy. I can’t imagine how they can be that way. I see red when I imagine a person not taking care of you right. HOW DARE THEY? You are a gift to them. You are utterly you, and yes, I’ll say it, you are pure. I’m not saying you are superhuman or an angel or any other such bullshit. You are special in that unlike Us, you are purely you, no guile, no artifice. Well, I know that the sign-song self-talk is an attempt to hide what is going on in your mind. Oh that is so dear. No, no, not patronizing you. I’m matronizing you, that’s different. When you vocalize, I listen with my deepest, quietest self. I heard “hooo-me” this morning and I knew it was “home.” Stretched-out words. You want to keep your thoughts private while expressing your feelings at the same time. You are infinitely clever. Who else could build what you have, with the tools you’ve been given?

Aside from this seven-month stint since July, Nat has not lived at home since 2008. This is a good thing. It was a good thing. He learned to live with others who do not love him or know him the way we do. He learned how to make his needs known, even with limited verbal ability. He acquired skills like food shopping, laundry, and other daily living activities. He developed beautifully.

But he also came home with mysteriously fractured ribs.  And though he did articulate a tantalizing few words explaining how it happened, we could not trust this for sure. The state investigation heard other such explanations from his disabled co-workers at his former day program, but deemed them “unreliable reporters.” Can you imagine being thought of that way? It chokes me, it feels like a kicked ass kind of rage. And yet that is how I sometimes think of Nat. I explain to doctors, “Well, he often answers just ‘yes’ by rote, because he either doesn’t know how to answer your question about his health, or he doesn’t want to talk, so ‘yes’ will get you off his back.”

So even when guys like Nat do express themselves in an effort to engage with us (the neurotypical world), they don’t really get very far.

And so, my dear, I will buy you green. All the green I can find. And I will hope that you will unfurl like the best of leaves, and find equally healthy growth in your new place.