16 August 2001
I focus here almost exclusively on Damian’s progress, on his sweetness, on his connectedness. I sometimes wonder if I’m giving you an accurate portrait as we move along this path toward full recovery. He’s a great kid, don’t get me wrong. Everything I say about him is absolutely true. But if you read my writing, you could easily think, "But he sounds adorable, not autistic at all. Just a little more language and he’ll be fine." And that’s not exactly the truth.

I’ve been reading Let Me Hear Your Voice, by Catherine Maurice. It’s the book everyone recommends when they’re trying to persuade you ABA (Applied Behavior Analysis) is not a bad thing, that it is in fact the only way to help a child go all the way to full functioning and why aren’t you doing it yet, you’re a bad mom if you don’t! So I thought it was about time I sat down and read the book. Can’t defend yourself if you don’t know what the opposition is saying. The book has been a surprise and a revelation, and I’ve got quite a lot to say about it, though I should wait to finish reading it before I do. It also stirred up a lot of thoughts about Damian.

Reading Maurice’s description of her daughter Anne-Marie as she began the journey toward diagnosis and treatment triggered memories of Damian this past January and February. When I wrote about him back then, I talked about all the ways he wasn’t autistic, all the ways he was so very related and connected to me and to Dan. And it was all true. Sort of. But there were other truths too and I don’t know if I’ve ever spelled them out.

I remember the month Damian started seeing Laura for speech therapy. I would sit in the leather chair by the window and watch as she reached out to Damian, trying to engage him in play. He liked her toys well enough, but he practically ignored her. He kept his head down and never looked at her. Never smiled. Sometimes he’d give a single word response to her questions and invitations. "Doggie," he might whisper, if she was showing him a bunch of toys and telling him about each one, or maybe -- just maybe -- "more." But then he’d get up and wander over to another toy in the midst of their game, as if she wasn’t there. Not quite present. Not truly engaged with her.

I watched with dismay. My sweet boy wasn’t acting so sweet. He was almost cold, definitely withdrawn. And no, I don’t think he was scared. I think he was resistant. It was hard, what she wanted. He didn’t know if he could do it. Life was suddenly too hard. For me too. I thought I knew him, but what I knew was how to make life easier for both of us, how to protect him from the world, not how to bring him out into that big scary open space.

A Regional Center social worker came by the house in late February to evaluate him. Damian wailed when she walked in the door and didn’t quiet until I got on the floor and with him. I distracted him with some toys and rocked him gently, cuddling him close. He took comfort in my lap, though he still cried every time he remembered that this strange woman was still here. I felt like saying to her, "This is not as bad as it looks! He’s a great kid!" But I sure as hell couldn’t prove it then. He had stranger anxiety to the nth degree. He would not allow anyone in the house. He even cried when Jami came to babysit even though she’d been coming for over a year and he knew he always had fun with her.

And oh my god, his separation anxiety. It tore me apart, made me crazy. I couldn’t go to the bathroom in a restaurant if it meant leaving Damian with Dan. If I left, he had no assurance I’d come back. His world didn’t make enough sense for him to know that.

I took him to see the Regional Center psychologist in early March. Damian was perfectly sanguine in that sterile room. It wasn’t a home visit, his safe space wasn’t being invaded. He wandered around the room while we talked, examining objects and moving on. He found a Ricola on the guy’s desk and unwrapped it. Cute. But he also lay down on the floor staring up at the light. He curled and uncurled his fingers. He sidled up to me and banged his head against my shoulder. He hardly glanced at the psychologist and did only half of the games/tests the man had set out for him. I couldn’t deny what I was seeing, though I desperately wanted to.

What I was seeing was autism. Mild, perhaps, but real. He could smile, laugh, even show his love for us, but he wasn’t comfortable in his skin and he couldn’t connect with everyone or particularly well with anyone.

We brought Damian to see Dr. Red in March. The receptionist took a Polaroid of the three of us. I can still see the shot if I close my eyes. Dan and I are smiling at the camera. Damian is looking away with a dour expression. Ouch. We went down the hall to a playroom. Damian wandered from box to box investigating the toys. We prompted him to put dolls here or there. He did so grudgingly, obedient but hardly joyful. Just barely interactive. Dr. Red describes in her evaluation how she tried to obstruct his play, to get him pissed. No go. He just avoided the issue by switching to another toy. He kept turning away from Dr. Red and from us, twisting his body around. He didn’t want to deal with us. It was too hard. At the end of the session, when play time was over and we were simply talking, Damian started running in a tight circle near the door. Stimming out of boredom and maybe as stress relief.

I remember so many hours at the beginning, watching him stretched out on the floor running a train back and forth along a small section of track. Dan or I would put another train on the track coming right at his train -- crash! Damian hated that. We’d take an animal and ask if it could ride on the train. Damian wasn’t crazy about that either. We’d break the track, close a gate, create an obstacle. He got angry. He cried. He didn’t want his repetitive, mechanical play interrupted. He didn’t want to think or react or engage. And I hated that.

Reading Maurice’s book brings back a flood of memories. Why didn’t I write about it at the time? I think I did, to some extent, though more in the Day by Damian log, not exploring the reality in full-on journal entries. I think it was too painful to face the full truth of it. It’s easier now that he’s made so much progress. If I’d spelled out what I was seeing back then, I would also have had to face the dreary possibility that he would never get better, or not by much. I think my way of refusing to admit that possibility was to say, over and over, "Look how much he’s got going for him already! Of course he’ll do fine, of course he’ll go the distance!" And it was true, all of it. But it was also true that he had a very long way to go.

And now? We have so many tales to tell of small and not so small triumphs, so many wonderful signposts: "Progress was made on this spot." Last week’s Dance & Jingle was a delightful highlight. A few days ago, he flopped over in my lap and said "I am flying." He was imagining himself as a plane or a bird, telling me what was in his head. I hold tight to moments like this, signs of a bright future, and they’re flooding in. My arms are overflowing and my heart is lighter week by week.

But. If I ask him what he did today at school, he’ll look away, mute, unable to answer. If I then ask, "Did you go on the swing?" he’ll say yes, but I never know if he’s remembering or just giving me the easy answer. And yes, I’m so very glad he can summon the word, but I still wish for more. He has functional language now, and I thank all the powers that be for that. He can ask us for juice or yogurt or to open the door for him. He can say when he’s all done or wants more, he can say no to music in the car (but he always says "no" and not "no music"), he can tell me what he wants me to do. ("Lie down on the bed!" he commands. "Why?" I ask. He looks at me blankly. I rephrase: "What will you do when I lie down?" "Lie on top of mommy.") But he can’t process words or thoughts or emotions enough to voice a stuffed animal or to say "I’m sad because you didn’t want to play with me."

He started using his true voice in April, but he still whispers sometimes, mostly when he’s talking to himself. And his out-loud voice is often a soft murmur, sometimes an impatient squeak, not always the full throated confident tone we want to hear. His echolalia comes and goes, as does his scripting from books. Neither have fallen away entirely.

He also mixes up pronouns on a regular basis, though we’re teaching him to switch them back around. If he says, "Wipe your tears," we take the tissue and mock-wipe our own faces. He corrects himself quickly. Most children do this when they’re learning to talk, but they self-correct by hearing the adults and older children around them. An autistic child needs more guidance. With everything. That’s the hard part right now. It’s not that he can’t learn. He clearly can and pretty damned fast. But he has so much to learn and he needs so much hand-holding to get from here to there.

Play still doesn’t come naturally. He loves playing with us now, he wants to play all the time. "Mommy come!" he demands, or "Daddy come!" He craves the interaction and that’s a wonderful thing. But he won’t usually initiate the game, he likes to watch what we do and copy it or wait for our cue, to follow our lead. If you say there’s a fire on the rocking chair, he’ll push his fire truck over there and maybe even lean a ladder against the chair for the fire fighter to climb up, but then he’s stuck. He waits. You say, "Oh, now the fire trucks are dirty!" He pushes his truck over to the car wash. He’s nothing if not a cooperative playmate, but he’s still far too passive. The same thing that makes it hard for him to say "I made a puppet at school today, it was a giraffe named Candy," makes it hard for him to think of what to do next when we play.

He still shows some of what they call stereotypical mannerisms, too. He goes through phases of opening and closing his hands, watching with the intent fascination of a teenager in the throes of an acid trip. He still toe walks, a sign that he's not feeling enough sensory input, though he seldom spins or runs in circles now, only when he’s bored out of his skull. But he does still open and clench his hands spasmodically when he’s scared or overwhelmed. And I’ve seen -- and stopped him from -- hitting his forehead with the palm of his hand. I take his hands and massage them or play a hand clapping game, turning it into something else if I can. Sometimes he shrugs his shoulders repeatedly. It looks like someone who’s had a hard day at the computer so I always start rubbing his shoulders, trying to ease his muscles. He likes that.

As I write, I’m realizing that every time I name an autistic mannerism or deficit, I immediately launch into a description of the intervention, the teaching method we use. I can’t help it. I can’t just baldly list a series of tics. It sounds too bleak. My brain still shies away from the evidence of a disorder, it seems. I want to see my child as he is in his heart and soul, not in the external symptoms of the syndrome.

I need to do both. Dan and I need to be objective enough to guide his treatment but not lose sight of the wonder and joy of the child we’re working to bring to full socialization. It’s a constant balancing act, looking back at how far we’ve come, simultaneously looking forward to where we want to end up. Trying, too, to live in the present and appreciate our son without judgement but with clear sight and a way in to helping him achieve his full potential. I think every parent strives for that, but not every parent uses phrases like "self-regulation," "visual learning," "motor planning" and "integrating symbolic play" when they talk about their kids. It’s an odd road we’re on, to be sure.

This Tuesday Damian and I waited for the elevator after his occupational therapy session. As we got on, we were discussing the fact that the elevator was going down. The elevator was full to bursting. About six women surrounded us. One of them smiled down at him. "Where’s the elevator going?" she asked him, entering into the spirit of it. He smiled up at her. "Down," he replied, "The elevator is going down." Everyone thought he was oh so cute. They had no idea he had any issues at all.

It was a lovely moment, a moment to hold close, but it was also not the whole truth. If the woman had asked him something else, something he hadn’t just been rehearsing, he probably would have frozen and maybe looked away in dismay. Shutting down, closing in.

Or maybe not. Yesterday after OT, we were in the same elevator. A stocky man with a broad, kind face smiled at Damian: "What’s your name?" Damian looked at him but said nothing. I said, "Is your name Joe or Damian?" That freed his tongue. "Damian," he said, and was content. He’d spoken to a stranger. Smiled and spoken. He can pass for normal, but it’s more than passing. He’s well on his way.

Celebrating the road markers. Trying to be honest about the deficits that remain. It’s a constant emotional seesaw.

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copyright 2001 Tamar