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Opening Walker’s heart and mind

Following a mix of confusing opinions from pediatricians and specialists, the Staceys’ began to worry that their child would never walk, talk, and perhaps even hear or see. But Walker was lucky — his parents would not accept defeat. Author Pat Stacey describes the day-to-day fears, obstacles, small milestones, and eventual success her family faced as they struggled to bring their son into full
/ Source: TODAY

Following a mix of confusing opinions from pediatricians and specialists, the Staceys’ began to worry that their child would never walk, talk, and perhaps even hear or see. But Walker was lucky — his parents would not accept defeat. Author Pat Stacey describes the day-to-day fears, obstacles, small milestones, and eventual success her family faced as they struggled to bring their son into full contact with the world. Stacey was invited on the “Today” show to discuss her book, “The Boy Who Loved Windows,” and offer a first-hand account of the “floor time” treatment model pioneered by Stanley Greenspan, M.D. Here's an excerpt:

Even though the doctor told us that Walker was normal — that his Apgar scores were high — I was troubled less by how this baby appeared and more by some quality in his awareness. He had looked past me the first moment I saw him. In fact, his gaze became an obsession of mine in the hospital. He wouldn't look at me as he lay in the small plastic bassinet. He wouldn't look at me when he nursed, either. It was as if he didn't notice either Cliff or me, or Elizabeth, who, beaming, sat on the extra hospital bed, holding him in her lap. I felt an emptiness. The word that came to mind, a word I never told anyone, was "scarecrow." My baby, our baby, had a scarecrow quality — thin, loose, vacant.

By the time Walker was five months old, it was clear something was wrong. We knew we were losing him; he was slipping away into the shadows. "Perhaps he's just uncomfortable because of his perpetual cold," suggested our family practitioner casually. Yet by now Walker still couldn't look at me at close range. Worse, he gazed away more often than he looked at us. He seemed more interested in the light that flooded into the house through the slatted blinds than in our daughter or us. He searched the windows, obsessively, compulsively. What was it about those windows? They seemed somehow significant to him. When he looked out, which he did now almost constantly, it seemed he wasn't just staring blankly but that he was reading something into the light, or the frame, or the blinds, as if there were an entire scene being played out for him there between the dust motes and the windowpanes.

Whatever one called Walker’s problem, Dawn (his physical therapist) felt he would surely be receiving a diagnosis of autism within a year if we didn’t act, and act quickly. By fortunate coincidence, Dawn was primed to do something that was out of the ordinary in her practice. Just three months before she met Walker, she had read an article by Stanley Greenspan and his colleague Serena Wieder in the journal “Zero to Three,” outlining an effective new approach for treating toddlers and babies with symptoms of autism. She was intrigued, excited.

One day she came to my house with yet another article. It was a prepublication draft of a "chart review" of Greenspan's 200 patients with autism. She explained to me that Stanley Greenspan was a child psychiatrist well known for his work in child development. He had spent sixteen years studying the subject at the National Institute of Mental Health, which led to a new philosophy of emotional development — for which he had won the Ittleson Award, the American Psychiatric Association's highest honor for research in child psychiatry. In his years at NIMH, Greenspan arrived at sophisticated criteria for understanding and defining emotional maturity and began to map out its phases. He applied recent research about how babies and toddlers "process" the vast amount of sensory information available to them each day. On the basis of his insights, Greenspan designed a therapeutic model to help children with a variety of problems. He called it D.I.R. (developmental, individual-difference, relationship-based model) or, informally, "floor time." (A year after Dawn discovered Greenspan's work through articles, he made the approach available to the public in his 1998 book, “The Child with Special Needs.”)

Floor time required parental involvement. Though it emphasized relationship, fun, and joy, the method drew its power from parents' ability to entice an impaired child to perform at increasingly higher levels of attention, cognition, and motor functioning — far higher than that child would normally be disposed to. It was tailored to a child's particular deficits and strengths and was designed to grow in scope as the child climbed the developmental ladder.

The article that Dawn brought me reported results that struck me as astoundingly positive. Greenspan had been able to help over 50 percent of his 200 patients to become fully functioning children —warm, engaged, interactive, verbal, and creative. Another 30 percent made substantial progress. He helped children reach these unexpected levels of functioning by using a comprehensive program including occupational therapy, speech therapy, and floor time. The therapy required that a child be reacting to his parents or therapist in what Greenspan called "circles of communication." A circle would be opened if someone tried to engage the child and closed if someone received a response. Someone smiles and the baby smiles back: one circle. Hand a toy to the baby and the baby hands it back: two circles.

The important question for Greenspan, however, was how high could a child "with challenges" climb?

I called Greenspan, who, though notoriously difficult to see, was eager to work with Walker because Walker was so young — by that time, nine months old. Two months later, I received a call from Greenspan's assistant, Sarah.

"I have a cancellation," said Sarah.

"But I thought there was a year waiting list."

"It's open for you. You can have three or four sessions," she said.

"Three or four?"

"Because you live so far away, it will take three hours for Dr. Greenspan to evaluate your son."

I hung up the phone, discouraged. There was no way we could afford three or four sessions with a famous psychiatrist. Besides, the trip to his office in Bethesda, Maryland, including airfare and car rental, might cost up to $1,500. Who were we kidding?

Still, I somehow felt compelled to make it work. Perhaps we could borrow the money or let it become credit card debt.

Cliff was more worried than I, and I was about to cancel the appointment when I called the insurance company. To my surprise, they said we were covered. Their contribution would work out to 50 percent of Greenspan's fees.

We drove up to Greenspan's large property on a gravel drive encircling a grove of oaks, walked around the back of the house near the tennis courts, and waited in an enclosed porch. He invited us into a large, comfortable room with threadbare rugs, old chairs and couches, stacked with papers and books, and littered with toys.

Greenspan leaned over Walker's records and studied them closely, holding his glasses as if they were a magnifying glass. He asked questions and took copious notes, leaning over the paper. He looked up occasionally and studied the baby on the floor. I watched him closely, ever anxious to see reflected in someone's eyes a window into Walker. I could not read anything about Walker in Greenspan's eyes, but I liked what I saw in this doctor. He was a tall, middle-aged man, balding slightly, wearing a blue sport shirt and chinos. There was a softness in his facial skin and a gentleness in the eyes, as if he'd just woken up. I had the impression of a person somehow softened by years instead of the familiar reverse. Greenspan stood up and disappeared through a hardwood door that at first seemed hidden, as if it were part of the paneled wall. I looked at Cliff, then studied Walker. We'd come a long way since May, had managed to lure Walker, at times, from those enticing sirens that beckoned him inward.

With little appetite, Walker was frail, but he was learning to move. First he had crept, then crawled. Elizabeth and I had found empty boxes at a dumpster at nearby Smith College and made obstacle courses for him. He crept through one box into the next. When he had become slightly stronger, we put pillows in the boxes, surfaces of varying textures, stuffed animals, balls, and blankets to negotiate. Cliff's sister, Susan, had given Walker some plastic stacking cups. Elizabeth, Cliff, and I made towers and enticed Walker to move toward them. He had learned the joy of demolition — crept toward the towers and destroyed them. The crashing sound was not a bother. Was he becoming less sensitive?

Cliff and I were buoyant on the day we came to suburban Washington, D.C., to meet Greenspan. The morning before we came, we had visited a café, where Walker hung over my shoulder, looking at a woman at the next table, smiling at her. We were proud that Walker could smile at people, that he could at last crawl, that we'd been able to teach him some simple games. Walker didn't stare at light much anymore. Yet I saw now in Greenspan's office, in this new room, that he was struggling to keep himself together. A baby nearly a year old (by now he was eleven months) would typically explore a new space, yet he didn't. There seemed to be little room in his mind or awareness for the new, for the toy or the window or the loose paper. Instead, he was just trying to manage the massive weight of the newness, trying to find out where he was in space. He rocked his head back and forth, back and forth; struggled to control his body, his arms flailed. A thin pattern of light fell across the Oriental carpets, though he looked at neither the light nor the rug.

Greenspan reappeared through the hidden door in the wall, seated himself, picked up a video camera, loaded it with a new cartridge, and gently suggested one of us get down on the floor.

"Dad?" He looked at Cliff.

Cliff got down on the floor and began to play with Walker. Cliff began trying to interact with him, yet Walker stayed largely mired in his own world. He picked up a block, knocked it against Cliff's block, and crawled away to play on his own. After a few minutes of Cliff trying to somehow catch up, Walker began frantically creeping toward the ends of the Oriental carpets that lay across Greenspan's floor. At the sides of the rugs lay long white strings, unraveled parts of the rug. He flew to the strings, grabbed them, sucked his thumb.

"Mom," said Greenspan, inviting me down. I went to the floor, eager to show what Arlene and Dawn had taught me. Yet Walker was difficult to reach.

I worked hard to entice him away from the Oriental rug strings. But the more tired Walker grew, the more hungrily he pulled at the strings, which he rubbed in his palm like a rosary and flicked against his upper lip.

Still, Walker and I made some progress. Together he and I played "Row, row, row your boat." Back and forth we rocked in front of Greenspan, and I, as Arlene had taught me, stopped my motion after each cycle, until Walker began to rock again to show me he wanted more.

Dr. Greenspan was happy to see that Walker was somewhat engaged, that he could creep across the floor to knock down our standard tower of plastic cups, but he wanted more. He steered us toward understanding that Walker's problem-solving needed to be not so much with toys, but with people. Walker needed to be constantly looking, laughing. "There are several levels from which we need to approach this. You want to get a level of juiciness into your play. Make it fun, joyful. But you also want to get the rhythm faster," he said. "We don't want him spacing out." Greenspan explained that we needed to keep Walker in a constant flow. If we made a sound, he must make a sound — that's one circle. We laugh, he laughs, that's another circle.

The point was: It wasn't just about reacting and staying focused. It had to be about people. It had to be about us first.

"No, no, no!" Greenspan called out to me. "Now you've lost him."

Cliff came to the floor again, and appeared to think for a moment about this concept ... play through people ... people being more important than things ... and then lay down on the floor and put the plastic cups on his eyes.

"Now say, 'I bet you can't get them' to Walker," said Greenspan.

I chimed in enthusiastically like someone at a horse race, "Go get them, Walker."

Greenspan turned to me. He was still the gentle man with the slightly sleepy eyes, yet somehow I saw something fierce and unrelenting there. He grew sober, serious, admonishing, and made it clear that I must never do that. Never. I must be careful not to tell Walker what to do. "Instead inspire him. No one tells a novelist what to write — they need to inspire you. Right?" he said.

Cliff hid himself behind a piece of cardboard. Walker smiled. Cliff peeked out.

"Now make him work for it!" called out Greenspan somewhat whimsically.

"Make him pull the cardboard away!" Walker pulled. Cliff hid behind again. Walker pulled it. Cliff put a dinosaur in his mouth. Walker grabbed it back.

"Hide it in your hand," directed Greenspan, quickly. "Ask him, 'Where's the dinosaur?' "

Walker looked around; Cliff made an enticing clicking sound to catch his attention. Walker grabbed the dinosaur.

"Now hide it again. 'Where's the dinosaur?' " encouraged Greenspan.

Cliff quickly hid the dinosaur under his legs.

"Now hide it in one hand and pretend it's in the other."

Walker found the dinosaur quickly.

"Now you're cookin'," said Greenspan.

The three-hour-long appointment went like that. Each time Walker proved he could do something, Greenspan made us sweat to make him go a step further.

When it was my turn again, I found even the old games, the "tower game" to be a challenge. It seemed to me that Walker was tired, obsessed with finding comfort. I was consistently thwarted by the bedeviling Oriental rug strings. Walker grabbed and sucked and seemed to pull himself into a vortex, a private world that we were no part of. There seemed no reaching him. It was clear to me that Walker was exhausted, perhaps more than I'd ever seen him. Arlene had taught me to read the signs, yet now Greenspan seemed to be ignoring them.

Still, he could see that Walker was tired because he said, "Say, 'You tired buddy?' (He gave his voice the tenor of a cartoon mouse.) 'I'm going to lie on your tummy.' "

I said it, I said what the doctor said, in the cartoon voice, and I lay on Walker's tummy. Walker began pushing me. I came back. He pushed me again — this time he was laughing. I was laughing, too.

"Oh, you're a good kicker," I said, finding myself lost in a moment of joy with Walker, pushing at his legs and laughing. Walker laughed again, kicked me, and pulled my hair. All of a sudden, he pulled himself up at complete attention, his posture firm and reaching upward. I had thought he was too tired, too sensitive. Now, he seemed a different child, ready for action.

"You see that," said Greenspan. "You take a simple thing like him tuning out, lying down passive, and turn it into a game, and see what he does? He pulls up and wants to play some more." I'd seen Walker laughing maniacally, yet there was a joyousness to him now that seemed unfamiliar.

After two hours, Cliff and I were exhausted, but what we'd accomplished wasn't enough for Greenspan. He wanted Walker to make choices with me. He'd noticed that Walker had enjoyed it when I took his hands and swung them back and forth.

"Mom, why don't you sit in front of Walker," he suggested. "Now show him your hands; hold them up. Tell him this one will be a 'back-and-forth' game. (He indicated his right hand and swung his head back and forth.) And tell him this one will be 'a kiss.'" (He indicated his left hand.) "Which game does Walker want? Now try to make it juicy and make it fun." Greenspan prompted me, with the elevated tone of a clown at a child's birthday party: "Touch my hand, buddy. Which one do you want?" (At eleven months old he's got to make choices? I thought to myself.)

Walker began touching my hands, yet I didn't have the feeling he completely got the rules of the game. I was working harder than I'd ever worked in my life, kissing him if he touched one hand, prompting him to keep up the game, whipping his arms back and forth, his body gleefully moving with them. I wasn't sure he knew he was making choices at all. Still, he was with me.

The evening after the appointment, Cliff and I were sitting in a restaurant with Walker. Greenspan had told us that we would need to make Walker work for what he wanted. "You must become the button that makes anything he wants happen."

"I'll give you this cup," I said, "if you squeeze my finger." Walker didn't react. We weren't sure he was even intelligent enough to understand. I said it again.

The boy who had previously never responded to a verbal request put his hand up to mine and squeezed.

Excerpted from “The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened With Autism” by Patricia Stacey. Copyright © 2003 by Patricia Stacey. Published by Da Capo Press, a division of Perseus Books. All rights reserved. No part of this excerpt can be used without permission of the publisher.