three road signs
7 February 2004

Damian’s clinic-based occupational therapist told me this week that she thought he doesn’t need her anymore. A year ago, I would have been appalled. In fact, a year ago, I was appalled when his IEP very nearly said “no more clinic-based OT.”

Should I step back a bit here, explain what I’m talking about? Damian, like many kids in his situation, has been receiving two hours a week of occupational therapy. An hour of that is at school, where they mostly concentrate on fine motor issues: handwriting, cutting with scissors, manipulating tiny objects. Also drawing on butcher block paper tacked up on the wall so the kids can develop more strength in their upper bodies, which most of them need, Damian very much included. The other hour is in an OT gym equipped with swings and slides, a trampoline, a climbing structure, a tunnel and a huge ball pit. This is the place for gross motor activities and sensory integration therapy. It’s been crucial for our little guy. So last year when the school OT said she thought he was done, I had a cow. A quiet, measured cow but a cow nevertheless. Because he wasn’t done. His sensory system was clearly not fully cooked. He flailed his arms, ran in circles, hated shaving cream and finger paints, fidgeted constantly in his seat. He flinched when he was in a crowd, tuned people out, shut down. It was fairly easy to convince her he wasn’t ready to graduate. Rivka, our clinic-based OT, helped me summon reasons, and they were good ones. We kept all our hours intact.

But that was then. On Monday Rivka came out to get Damian in the waiting room and instead of trotting off with him, she sat down next to me. “What do you see him needing from me?” Usually if a therapist asks me a question like that, I can spout of a whole stream of answers. This time my mind was blank. He’s doing well. His stims mostly show up when he’s tired or bored, just like any kid. He wants to hold my hand the first time he climbs up a jungle gym, but then he’s okay after that. It’s a confidence issue now, not a sensory one. Hell, he got a haircut a few weeks ago and not only did he sit on his own (usually he’s in my lap, cowering) and not only did he not whimper once, but he even got so engrossed in watching Toy Story, he laughed at the movie. In the midst of this most taxing sensory experience, he laughed.

So this time instead of fighting the service cut I agreed. We can move on to swim lessons or tai kwon do, something to give him more strength and poise and center him in his body, but something mainstream. He’s graduated from the need for this intense one-on-one therapy and that feels like a small victory.

A few weeks ago, I started taking Damian to a gym class at a local park/recreation center. The kids are all four and five years old; they learn the basics of a different sport every week: basketball, soccer, hockey, t-ball. At the first session, I sat on the sidelines, tense. I hadn’t said anything to the teacher about Damian, about his autism. So I watched and wondered. Can he fit in here? Can he keep up? Should I have let the teacher know to keep a special eye on him?

He did fine. He didn’t get the hang of dribbling, of course. He chased the ball as it bounced in ever diminishing hops across the gym, but then so did all but one of the other boys. Dribbling is hard. But he listened carefully to the teacher and when it was his turn to shoot, he bent his knees just as she’d shown and gave a little jump and even very nearly almost got the ball into the hoop high above his head.

Every week now I watch in wonder. My little boy may not always pay perfect attention and he may not always know how to hold his body, but he does quite credibly for a first timer. He listens well enough to follow instructions and often manages to hit the ball pretty far, too. He’s in the middle of the pack of boys, not falling behind. And the teacher doesn’t know he’s any different. She doesn’t have to know. That’s a victory too. Not so small, this one.

This Thursday we took an unusual morning drive, somewhere we hadn’t been for very nearly three years. We went to see Dr. Red (whose hair isn’t red after all), a developmental pediatrician. When you have a kid on the spectrum, you’re supposed to have a specialist follow your child’s progress every six months to oversee and help you tweak their program of therapies and schooling. We didn’t like what she had to say three years ago – we thought she was describing the wrong child – and so we never went back. But I’ve asked around and there really isn’t anyone better out there. They all make snap judgments (they only have that hour to assess, after all), and they all put children into little clinical boxes. It’s just what they do. I thought for a while that Kay could follow Damian’s progress, and maybe she can, but she’s not an MD and her opinion doesn’t carry as much weight with the school district. We need that voice of authority.

With his kindergarten transition on the horizon, that huge jump out of the safety zone of his wonderful special needs preschool, it seemed time for us to have someone else in our camp. We could pay someone else a lot (a LOT) of money for a first evaluation or we could give Dr. Red another try. A follow-up is still outrageously expensive compared to regular doctors but is a quarter of the cost of the initial evaluation. Dollars and cents make sense.

I explained the visit to Damian by telling him she was a doctor but she wasn’t going to examine his body the way Dr. Jay does. Some doctors look at the mind, they see the way a child is growing and learning, and so she’d want to talk to us and to him and maybe play with him a bit. He accepted this. After all, for all he knows, every kid has two pediatricians. And for all he knows, every kid has OT and speech and floor time sessions. Because every kid in his class at school does. It’s going to be a shock when he figures out that’s not so for other children. We live in an alternate universe. As Cheri said recently, our childrens’ development is micromanaged. Necessarily so. And so Damian has two pediatricians.

It was a clear day, the air so sharp and bright. As we walked from the car to the low-slung cement building, I couldn’t help but remember how it felt three years ago. Holding Damian’s hand, wondering what the doctor would see when she looked at him. This time he ran alongside, chattering about the building with its outdoor walkways and about the stuffed lizard he’d brought for company. This time when the assistant weighed and measured him, he answered her with a normal voice and immediate action. Like a regular kid, you know? And this time when Dr. Red came in with a cheery “Hello!” Damian said “Hi” right back.

I can’t remember how she said it, how exactly it came about. She had a copy of his last IEP in her lap. She asked us a few questions about his progress. But it was clear to her – and she made it clear to us – that this was not the same child she saw three years ago. She was very warm to him and to us. Lots of smiles. And Damian was so very present. When she was talking about different developmental stages (she said our kids have their own stages but also the normal ones), she asked if he was in the silly jokes phase. Damian looked up from his play and told her a joke.

The thing that stands out most – how can it not? – was this: She said that he’s not only made a lot of progress, not only has he done well, but he’s now up to speed. He's within the realm of normalcy. She said “You know he’s going to lose his diagnosis, don’t you?” Not yet, mostly because he still needs that seal of approval to get services from the district. But he will and not that long from now.

I always thought there would be a clear threshold, here stands an autistic child and over there, on that square, stands a child without a diagnosis. But it’s not like that. I know this now. Dr. Red echoed it. She said that there are some issues that typically come up, that we need to watch for down the road. She mentioned ADD/ADHD-like behavior. This makes sense to me. Dan and I have talked about it. Damian’s ability to attend, his ability to sustain, and his ability to control his body while he does so, they all waver. Sometimes they’re excellent, sometimes not so much. It’s one of the places where autism shades into ADD, and that’s something to watch for and work on.

She also mentioned something that concerns me more because I think it’s the heart of what’s still wrong. A lot of recovered autistic children, as they grow and life becomes more complex, become anxious. You can give them coping skills by teaching them to roll with the punches in floor time, but there may be some punches that are too hard, too unexpected, and they don’t have the flexibility or maybe it’s the confidence, the necessary underpinnings to take it in stride. I see that already. He has all the tools he needs to be whole and wholly in the world, but he doesn’t always know it. He remembers, in a visceral way, what it felt like to have more deficits and so he lacks complete confidence in himself and his body. He carries a cloud of anxiety everywhere he goes. Sometimes it envelops him, but mostly now it just lurks a few feet behind, lying in wait.

What’s the answer? We work on it all now, continue working, continue watching. Think about therapies and if necessary consider drugs. Obviously, we want to avoid drugs if we can. And I think we may be able to because we know what to expect and can help him prepare now.

This journey is not over. In a sense it can never be over. If you stop growing, stop consciously working on yourself, you might as well stop living. There’s a spectrum of autism, all right. We’re all on it. The shading on one side of the line is just a hair darker than the shading on the other side. Damian may or may not be autistic now. It doesn’t matter. It’s a continuity of issues, getting ever lighter and less burdensome. That’s the miracle, that he gets better. A gradual, understated but astounding sort of miracle.

While we sat there talking, Damian was enjoying the toys. At one point, his lizard had its head sticking out of the front of a school bus. The lizard was the driver, you see. But the back of the bus was problematic. There were two swinging doors, but one kept falling off. The first time, Damian got frustrated and asked for help. I put it back on. The second time, though, I said it was just going to keep happening and I didn’t want to help him again. So he got pissed at the toy: “I won’t play with it anymore, I’m going to put this back and not play with it ever again because I’m mad at it for breaking!” After which, he was fine. This is self-regulation at its best. A new skill, I should add. I think Dr. Red was impressed. I know I was.

One thing definitely did impress her. She asked Damian what he wanted to be when he grows up. He said “You know what I want to do for work when I grow up? I want to be an animal doctor. I want to be a veterinarian because I want to help animals feel better.” She loved that. She told the receptionist later what he’d said. That was when she turned to me and said “You made my day.” I understood why. You never know what’s going to work, how far a child will develop. It’s got to be tough being an autism doctor. Your heart must break every single day. Some of the kids make huge strides. Some take baby steps. Some don’t even do that. There’s no predicting which it will be when you look at a newly diagnosed child.

I understand why she gave us that bad report three years ago. She only knew what she saw. We knew more. We knew what we saw at home and somehow too we knew our child, the one underneath the itchy skin and emotional turmoil on the surface of his psyche. I think every parent does. For us, though Damian’s come a hell of a long way in three years, he’s still the same child he was then. Just more mature and more himself. And now he can show that self to the world. That’s the biggest victory of all.

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