We recently took Jack to a private Occupational Therapist (OT) to supplement the therapies he receives at school. This guy is very well known in town and seems to have the only private pediatric practice in town. There are several places in Denver, but for wee Fort Collins, this seems to be it. This OT has a great reputation. When I brought up his name to Jack’s speech therapist, and then to Jack’s classroom teacher, they both lit up. Oh, this guy is awesome.
Well. Not so awesome. On our first (and it turns out, only) visit, he brought out a toy that scared Jack. That is not so unusual. Jack is scared of any number of things. And recently, oddly, he has become very anxious about spinning, whirring toys, which used to be HIS JAM.
When we moved away from Wilmington, North Carolina, our dear friend Lisa gave Jack a handheld fan with Woody from Toy Story on it. Push a little red button, and the small yellow foam blades spin around. Jack LOVES fans and things that spin, and he adored this gift. He carried it with him wherever we went, all the way across the country. It was “the cowboy fan” that got us through many a tight spot with Jack. But now it terrifies him.
Don’t ask me why. His babysitter, his speech therapist at school, gave him spinning lights and fans, thinking he would love them. But he hates them, now. Not sure what happened, but something triggered a startle reaction in him, and he never went back.
So anyway, this new OT brings out a spinning toy, and Jack freaks out. The OT tries to encourage him to interact with the toy, and Jack runs to me. I try to encourage him to go along with the exercise, and he finally runs to the corner of the room, facing away from both of us, and screams. So I figure we’re done. I go to hold him, and the OT stops me. He keeps going with this exercise, and Jack gets more and more frantic, and finally bursts into tears.
Finally, I pick up my boy and hold him on my lap, and he continues to cry, scream, and beg me for assurance. “The scary toy is gone. The scary toy is gone.” He repeats it over and over, his eyes on me, silently urging me to repeat his statements, so that he’ll know that they’re true. And I do. “It’s gone, baby,” I say. “It’s gone.”
This may be the end of it, except that throughout the above exchange with Jack, the OT is nattering at me in an insistent voice, telling me not to repeat Jack’s statement because then it lodges it in his mind, and he perseverates on it. Then he goes on about an example of a kid saying, “I have no friends.” And the parent says, “Of course you have friends.” Which dismisses and negates the child’s feelings. I look at him quizzically. This situation is nothing like his example. Does he even know what he’s saying? Or is it what he’s seeing that’s off?
So I have Jack, my sweet, terrified son, screaming in my face, and a skinny, white-haired hyper man behind him, telling me in a Jersey accent about how I’m doing it wrong and not helping my kid. I almost walked out right then. (Not for the Jersey accent. I happen to love the accent, and many people who speak with it.) But I didn’t. I saw it through. I nodded my head, waiting for the lecture to finish and for Jack to calm down. And finally, about ten minutes later, Jack is calm enough to engage in one more activity, but he insists on doing it from my lap. I don’t see how this is helping.
The next step, the OT tells me, is for him to sit down with Brian and me and discuss his findings from Jack’s “assessment.” For one reason or another, the meeting gets postponed for nearly a month, and by the time we meet with him, face to face, it is early February. I have pretty much made up my mind about this person, and Brian has disliked him from the first phone conversation because he uses his name to much: “Let me explain, Brian, blah blah blah.” It reminded him of the Bible group in college, where people used the name Jesus or God about a dozen times in a short prayer. It smacks of insincerity, of trying too hard, a little bit of a used car salesman.
So we went into the meeting with the agreement that unless this OT guy blows us away and changes our minds about him, he’s a no-go. Here’s the thing. In some ways, he did blow us away. He had good ideas about Jack’s sensory systems, and sound practices for helping to regulate them. Get him on a trampoline four times a day. Get him on a swing as often as you can. Do a “helicopter dance,” where Jack turns three times in each direction, at least once a day. These exercises, which strengthen Jack’s vestibular and proprioceptive systems, will help Jack to regulate his brain and help him calm down more easily. He noted that when Jack had visited the first time, he looked everywhere, taking in the environment visually because he couldn’t sense it accurately with his body.
He showed us a chart, using Calvin and Hobbs drawings, illustrating the range of arousal states, with Calvin slouching on a chair at zero, and jumping all over the place at ten, his tiny body surrounded by a halo of arrows pointing in different directions. In the middle, he told us, is where our best learning and communication happen. Without regulation, he explained, kids “like Jack” go back and forth between zero and ten, with little or no time spent in the middle of the scale. Once, when he left the room for a moment, Brian pointed toward the OT and back at the picture of Calvin at ten, with the arrows bouncing around. Yes, this man is definitely on the manic side. But he has good ideas.
My moment of clarity came when the OT proclaimed that the exercises we do with him every day at home will make the biggest difference, over time. “I can throw ideas out to you all day,” he said. Yes, I thought. I’m sure you can. But a million frenetic ideas won’t help as much as three or four good ones. So I figured if we can implement the suggestions he has already made, it may do Jack more good than coming to his office once a week and enduring the word vomit that emits from the OT pretty much constantly.
And here are a few other things we noticed. When the OT talked about the concrete-objective stage in cognitive development, I said, “Oh, from Piaget.” And he looked surprised. He seemed to have the idea that parents are not very smart, and that we have to be convinced to do things correctly. He also said something at one point about “forcing” kids to do things they don’t like. I understand that things like brushing teeth and putting a coat on when it’s cold are often things we have to cajole our kids into doing. But if Jack doesn’t like OT, fears it, talks about it when we’re not there like it’s a danger, that’s not a good thing.
We have been on this road long enough, and have worked with enough therapists, that I can get a pretty good sense pretty quickly whether a given relationship is going to work out. The best therapists and teachers for Jack have been those who have not only put him at ease, but have reassured us, as well. Those who have helped us to learn how to help Jack without making us feel like we’re horrible parents and doing it wrong. This guy may have a great reputation, and I’ve heard he’s very effective with a lot of kids. But I don’t think Jack is one of those kids.
And this brings me to my final point. We are seeking help from an OT because he is an expert on autism. But Brian and I are experts on Jack. And if our expertise and experience are not included in the discussion, we need to look elsewhere.
On the flip side, last week, we also toured the school where Jack will attend Kindergarten in the fall, in a full-day autism program. The director there showed us around the school, and the classroom where Jack will spend a lot of time next year. While we were there, one of the kids got upset, and Brian’s hackles went up. “Jack doesn’t do well if he’s pushed too hard,” he told her. “He’ll only get upset and shut down.” The director nodded and said, “We have found that every kid is different. And every kid needs a different approach to help him or her learn effectively.” Another moment of clarity.
Add to that the school’s mascot is the Owl. The one who sees in the dark. And Jack’s current favorite animal in the universe. And a symbol I often associate with my mom. Oh. Things are looking up.