I'm sitting on a metal folding chair in the corner of a large, open room watching my son misbehave. I'm trying not to interfere. He is being tested by Rebecca, an occupational therapist, but he is not cooperating. She asks him to imitate a simple sequence of hand movements: she taps the child-size table where they are sitting with her right hand once, then with her left hand, then with her right hand once again. Evan flashes her a beautiful 5-year-old's grin, but then beats out his own rhythm on the table. She calmly repeats the instructions and tries again, with no success.
Next, she demonstrates a sequence of foot stomps. He ignores her and asks if he can play on the mats in the center of the room. I wonder, "Does he understand what he is supposed to do?" I suggest that I show him how to do it. Rebecca indulges me and I carefully copy her alternating foot movements. Evan just laughs at us both and runs off.
I cringe. This is exactly why we're here: He won't follow directions. For weeks now, Susan, his Montessori preschool teacher, has been greeting me with a furrowed brow when I arrive to pick him up each afternoon. She catches me on the playground and, with increasing agitation, catalogs the ways in which Evan refuses to follow the routine, respond to direction or make any apparent attempt to stay out of trouble.
He bumps into other children, steps on their work, makes loud noises, jumps and wanders aimlessly around the room, refuses to stand in line or join the group at circle time. He talks about poop and penises, obsesses about Scooby-Doo, generally acts the fool. When told to choose among the array of activities lining the shelves of the classroom, he rejects all of the options. When asked to sit on the back porch of the school building where his noise making won't disturb other children, he explodes. When forced to talk about his misbehavior, he shows little remorse and avoids looking Susan in the eye.
In our culture, we don't take kindly to children who refuse to do what they are told. We label them with euphemisms, such as difficult, willful or spirited. When these kids show up in my office as early as age 3 or 4, their parents—often tearful, angry, guilt ridden—want quick advice about how to win the battles they are losing. If their defiance persists, we call these kids maladjusted, antisocial or delinquent. We send them to the principal, to the school counselor, to a therapist—perhaps to their physician and a pharmacist. When these efforts fail, we send them to the judge, to the parole officer, to the warden.
Near desperation, I followed a friend's suggestion and called her son, a newly licensed neuropsychologist with a small practice and time to talk. That conversation led me to a murky netherworld outside the DSM-IV, where I discovered alternative diagnoses such as nonverbal learning disabilities, regulatory disorders and sensory integrative dysfunction. I wasn't sure where we were headed, but I knew that the map I had been using for years as an expert on children and families couldn't get us to where we needed to go.
This is how we came to Rebecca. Cautiously. Skeptically, even. I knew that occupational therapists sometimes worked collaboratively with psychologists; yet, in five years as a staff psychologist at one of the leading pediatric hospitals in the country and eight years in private practice, I had never met an OT. I had a vague notion that they helped babies with feeding problems, children with fine-motor delays and survivors of traumatic injury. What was an OT going to do for my precocious, uncooperative son?
In my first conversation with her, I sensed that Rebecca knew something about Evan that I didn't know. She was the first person who suggested that he wanted to please me, but couldn't. That in most situations he was doing his best. That many things that seemed simple and reasonable to me were, in fact, impossible for him. That there might be reasons for everything he did—and didn't do. That there was help.
She tested him on 17 different tasks that measured visual skills, coordination between the right and left sides of his body, balance, sensitivity to touch, accurate positioning of his body in space, imitation of movement and the ability to follow a sequence of instructions. Initially, the tasks were nonverbal but highly visual, like recognizing a picture embedded within another picture or copying geometric designs. Then she asked him to do things like move his finger from one spot on a map to another—without looking at the map—or to stand on one foot with his eyes closed. At first, he seemed to do pretty well, despite his reluctance to participate. But when he was forced to rely on touch, balance and sensory information coming from his muscles and joints rather than from his eyes and his ears, he flat out failed. For example, when Rebecca lightly touched one of his fingers without allowing him to look at his hand and then asked him to identify which finger she had touched, he couldn't do it. In most instances, he chose the wrong finger.
I was shocked. Evan was a creative, vivacious character who could talk circles around anyone on almost any subject. I had never thought of him as anything other than gifted. "He escapes into language," Rebecca explained. "He uses it as a distraction from tasks that are too difficult." Tasks too difficult? For Evan? With that comment, my understanding of my son began to change dramatically.
Several days later, my husband and I sat with Rebecca in her clinic. She reminded us that she had not evaluated Evan's intelligence, only his ability to process sensory information. And she confirmed that she had, in fact, found evidence of sensory processing problems. He was extremely sensitive to touch, but he often couldn't tell where he was being touched. As a result, he responded to tactile sensation defensively. His balance was shaky and his upper body was weak, so he often held his left arm bent and close to his body to stabilize himself. Because of this, he didn't use the right and left sides of his body in a coordinated manner. He also had a great deal of difficulty with what Rebecca called motor planning—the ability to plan, organize and carry out new or unfamiliar movements. She explained that these weaknesses interfered with his ability to pay attention, follow basic directions, participate in group activities and engage in purposeful, independent activity. They were also likely explanations for his emotional reactivity, his resistance and his sense of helplessness.
For most of us, the delicate interaction between the brain and body known as sensory integration (SI) is nothing short of marvelous. It allows us to move purposefully through the world without being driven to distraction by the cacophony of sensory experience that bombards us each minute we are awake. It is how we can sit at a computer, concentrating on abstract ideas without thinking about how to position our body in the chair so that we don't fall on the floor, or where to move our fingers on the keyboard without looking at them or when to ignore the sounds of the wind at the window and the barking dog and when to tune in to the ringing telephone or the crying child.
Rebecca talked to us about "sensory integrative dysfunction," a malfunction in the brain's translation of sensation into meaning and action. For example, the brain might not automatically recognize that pressure on the skin and muscles of the abdomen is coming from a too-tight waistband. It may not judge accurately whether the sensation is important or trivial, dangerous or benign and, therefore, may not respond logically or efficiently.
Children like Evan vacillate between states of over- and under-stimulation and, as a result, often act in ways that are erratic and inconsistent. Everyday tasks—washing their hair or brushing their teeth—quickly overwhelm them. Complex tasks—learning to ride a bike or cleaning up a messy room—totally confound them. They become discouraged, irritable, whiny, explosive.
We started taking him to Rebecca for twice-a-week therapy sessions, but I would have taken him once a day if she would have agreed to it. She predicted that he would respond well to treatment, but that it would take time—at least a year. This was not magic: it was hands-on, developmentally oriented therapy based on the notion that the brain is shaped by experience. Through play, Rebecca provided Evan with sensorimotor challenges difficult enough to be appealing, but easy enough to be attainable. She said that these experiences would build upon one another, gradually laying the neural pathways between body and brain that were necessary for more efficient sensory processing.
Watching Evan and Rebecca together, I had to remind myself that they were shaping his brain. To my untrained eye, it looked like they were just having fun—crawling through tunnels, spinning in tire swings, diving into bean bags, tooting on horns, jumping through hoops. But surreptitiously, she was working him. Decreasing tactile sensitivity. Increasing upper body strength and postural stability. Encouraging bilateral coordination. Practicing motor planning. Building self-confidence. Developing a sense of mastery.
Within a few months, Evan stopped hating school. He started to recognize his own weaknesses, which made it easier for him to calm himself when he got upset, rather than exploding or disintegrating into a crying heap. When the din of the classroom became too intense and he started to get jumpy and loud, he asked for permission to go into the refrigerator box for a break. As his sensory processing became more efficient, he was able to focus on learning and enjoy its natural rewards.
"I'm so busy doing work at school that I don't have to try to be a good boy," I heard him tell his grandmother one afternoon.
Now I frequently hear myself defending kids' best intentions to their exasperated parents: Nothing would make your son happier than to please you. He wants to, but he can't—and it's up to us to figure out why. I find myself comforting parents who blame themselves for not being in charge of their children: It's not your fault. You have not caused this. I tell them honestly that I know how it feels to say things to your child that you deeply regret. I give them permission to ease up: It's okay to give in. Love is more powerful than control.
I'm still learning, and I'm not always certain when sensory integration is a reasonable framework for understanding behavior problems. When kids persist in everyday battles, I routinely inquire about their over- and under-sensitivity to sensory experience. I recommend an OT evaluation before a medication consultation for most hyperactive children. I don't want to overidentify sensory integration problems; on the other hand, I don't want to ignore the possibility that some kids cannot follow the rules, earn the points or honor the family contract despite considerable effort on their part.
This blog is excerpted from "The Impossible Child," by Karen Smith. The full version is available in the September/October 2000 issue, Making Schools Work: What Therapists Have to Offer.
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