“This way,” Abato invited, touching Zachary’s arm for a moment to direct him out of the lobby into one of the adjoining hallways. Zachary noted the security locks on the door they passed through. Abato wasn’t punching a number into the PIN pad or swiping a security pass, but Zachary had a feeling that if he had turned around to test any of the doors that they walked through, they would all be securely locked.
The walls were painted in bright colors and were liberally sprinkled with framed posters of cartoon and movie characters. The initial corridors that they walked through were well-maintained. No dented, scuffed, chipped walls. But Zachary supposed they were still in the administrative area, which would be easier to maintain with no access by residents. Abato was looking sideways at Zachary, watching him for his reaction.
“It’s very bright and cheerful,” Zachary obliged.
“We take great pride in making this a happy place, a place children can enjoy being.”
Zachary nodded. Some of the hospitals he had been in had made an effort to decorate with cheerful themes, but it didn’t fool anyone into thinking the patients would choose to be there instead of home. It had never made Zachary feel any better about being in some psych unit instead of being well enough to function on the outside.
Rather than making him smile, the glossy, colorful posters at Summit made him feel anxious and trapped. He focused on breathing deep and slow. Pushing his breath out completely before taking in another lungful of air to ensure he didn’t start hyperventilating. The oxygen would make him feel less anxious. Breathing slowly would keep his heart rate down. It would keep his autonomic nervous system calm, so he didn’t dissolve into a panic attack.
In theory.
Dr. Abato was talking about the facility, motioning in random directions as he talked about their various features and programs. Zachary tried to focus on what he was saying to process the words, but he couldn’t. The words were English, but Zachary couldn’t string together the thoughts. He just kept smiling and nodding so Abato wouldn’t notice his reaction.
“Residents come to us from all over the country,” Abato said. “Summit’s programs are unique, it’s one of the only facilities of its kind.”
Zachary nodded again. Abato opened a door and motioned for Zachary to go through ahead of him. Zachary walked through the door, transported from the silent, peaceful hallway into a chaotic, noisy carnival of flashing lights and arcade games. He froze, senses overwhelmed by the change in the environment.
Abato’s hand was on the small of Zachary’s back, walking him the rest of the way through the door so that he could shut the security door behind them. He laughed at Zachary’s reaction.
“It’s quite something, isn’t it?” he said proudly.
Zachary looked around. There were children of various ages playing electronic games. There was a ball pit, a climbing wall, and what looked like hamster-tubes to crawl through. The theme of bright colors and cartoon posters continued.
“What is it?” Zachary asked.
“This is a reward room. When a student is able to reach the goals that his team has set to moderate his behavior, he is allowed a ‘big reward.’ They get smaller rewards for every good behavior, of course, that’s how we are able to teach them. But we have found that they are far more motivated, especially the higher-functioning kids, when they have that big ‘Disneyland’ reward to work toward.”
Abato motioned Zachary forward. Zachary tried to focus on the details and shut out the assault of the noise and lights and bright colors. It was not as busy as he had thought at first. Not theme-park-busy. The residents were quiet and well-behaved, mostly playing separately rather than in clusters. Abato’s ‘kids’ ranged in age from around nine years old to teenagers and young adults, with a couple who were obviously in their forties or fifties. Each resident had a staffer standing nearby or helping them with what they were doing. Most of them had on school backpacks. Zachary noticed that the aides had small boxes hanging from their belts with pictures of the residents they were responsible for. Maybe for meds, schedules, or emergency protocols.
“This is our store.” Abato pointed out a glass-fronted retail store where Zachary saw girls’ frilly dresses, handbags, snacks, magazines, and other sundries that a commissary or gift shop might have. “Those who want to can earn tokens that can be redeemed for items in the store. So they can save up for things that they want, learn how to budget, and other important life skills.”
Zachary nodded. “That’s cool.”
He had been places that used token economies to allow kids to make purchases, and had always found it humiliating and dehumanizing. You made your bed? You got a token. Eat with your fingers at dinner? You don’t earn your meal token. Participate in class? Token. Ask too many questions and irritate the teacher? No token. And after weeks or months of bowing and scraping and being forced to do every little demeaning task the staff asked him to, he would be able to buy a chocolate bar, or writing paper, or a key chain with a cartoon character on it.
There were a couple of girls looking at purses in the rewards store, shaking their heads at each other, whispering, and looking frequently over their shoulders at the supervisors.
A boy was walking toward Zachary and Dr. Abato. He had pink cheeks and a sunny expression. He was probably eleven or twelve, but had the open, guileless expression of a much younger child. He was walking directly toward Zachary, eyes on him.
“Walk on by,” the male aide with him instructed. “Don’t bother the doctor. He has a guest.”
But the boy gave no indication that he heard. He continued to move directly toward Zachary and the doctor. The aide reached out and nudged the boy’s shoulder, steering him off to the side. The boy opened up his arms as if to envelop them both in a hug. The aide grasped one arm and jerked him away, pulling him forcefully away from them. Zachary slowed, opening his mouth and turning to look. But Abato pressed him forward.
“Don’t stop and give him attention. That would be rewarding bad behavior. He needs to learn how to behave appropriately and to listen to his aide when he is told something. Just keep going and don’t even show that you saw him.”
There was a yelp from behind them, and despite Dr. Abato’s stricture, Zachary looked back at the boy, who was starting to cry, his arms bent and hands close to his face, shaking.
“He’s fine,” Abato said. “Just part of the learning process.”
He directed Zachary around a corner. “The games can be overstimulating for some of the kids. Some of them are uncomfortable with the noises and flashing lights, or just with being around so many other students. So there are quieter reward rooms as well.”
Zachary peeked into the rooms that they walked by. A pool table in a room with dim lighting. A shelf of books and a couple of beanbag chairs. Computers in study carrels so that the user was not distracted by the others sitting close to them.
“We have an incredible success rate,” Abato bragged. “We have succeeded in improving the behavior of some of the country’s most intractable students. They can learn! Even those who refuse to talk. Who refuse to toilet or take care of themselves. We can teach them at Summit. And you can see how they love it here.”
All around, Zachary saw quiet, cooperative children who, despite being taken away from their families and institutionalized, appeared to be happy and thriving. There was little physical intervention, with staff members hovering nearby or giving verbal instructions and rarely having to physically redirect the residents. Maybe it wasn’t the kind of place where Zachary had lived, where he’d had to be vigilant all the time to avoid being victimized. Maybe a child like Annie could live happily at Summit.
Dr. Abato gave an expansive smile. “You’re looking at the best place in the world to send your special needs child. The very best of the best.”
Zachary gave a brief nod, not sure what to say to this. They walked into a bright, sunlit room. An arboretum of some kind. Big skylights, tall trees, bushes, flowers, the sound of tricklin
g water. There were a few children there, standing quietly or walking around looking at the ground. One of them, a boy of about seventeen, looked up through the branches of the trees at the blue sky, moving his fingers rapidly back and forth in front of his eyes. The staffer standing close to him said something to him. The boy made no response. He just continued to shake his fingers in front of his eyes, letting out a delighted laugh. Dr. Abato looked at Zachary and checked his watch. “I’m sure you’d like to linger here, but I have other appointments, so we need to move on. There are other things I would like you to see before our time here is up.”
Zachary nodded, turning away. He heard the aide prompt the boy again. He turned his head to look back. Suddenly the boy let out a shrill yell. He clenched his hands, his face an ugly grimace, his back arched. He shrieked something incomprehensible. The other children in the arboretum were looking his way, their faces white and anxious, eyes wide. One of them started hitting his forehead with his fist. The teenage boy’s aide moved in and took him by the arm, speaking in a low, firm voice, and escorted him toward a door the opposite direction from where Zachary and Dr. Abato were going.
Zachary was shaken. The boy had seemed to be perfectly happy and then had suddenly started yelling. Was he angry or upset about something? Was the mood shift simply part of autism? Zachary knew that Annie had been prone to tantrums and meltdowns. Mira had said that Quentin had been violent. So he assumed it was just part of the behavior that one expected with autism.
“Nothing to be concerned about,” Dr. Abato said, reading Zachary’s face. “If the students cannot control their behavior in the reward rooms, they will be taken back to their units. You can’t expect perfection. They are still learning.”
Zachary nodded. “I just wondered… if there was something specific that triggered his outburst. If he was upset or… something happened…?”
“Sometimes we can identify the antecedent, and sometimes we can’t. The more we can identify about what triggers outbursts or bad behaviors, the better we can do at eliminating inappropriate behaviors.”
“Sure. That makes sense.”
The talk of eliminating inappropriate behaviors made him uncomfortable. He couldn’t count the times in the past that someone else had been passing judgment on his behaviors without understanding why he acted the way he did. Sometimes Zachary himself hadn’t been sure why he acted the way he did. But sometimes… he just felt like the adults in his life were being unfair. They stood at the periphery, uninvolved in his life except to decide when he was behaving and when he was not behaving, punishing him according to their arbitrary decisions.
“Does he talk?” Zachary asked, motioning to the boy who had been taken away.
“Justin? No. He’s completely nonverbal, despite our best efforts to find his voice.” He made a gesture toward where the boy had been standing. “Other than yelling, that is. We’ve tried to help him to find his words, but he’s very resistant. Very stubborn.”
“So you can’t ask him what it is that sets him off.”
Abato looked at Zachary for a moment. “No, he can’t tell us what it is that bothers him. But even if we could ask him to explain it to us… I doubt it would be of any help. These children tend not to be very self-aware. Even the higher-functioning and non-autistic kids that we get… asking them to explain what’s going on in their minds doesn’t make much difference to the therapy. They lie, they don’t know, they are manipulative. Sometimes it is actually the lower-functioning kids who are easier to treat. They can’t argue with you.” Dr. Abato gave a little laugh and shake of his head at the irony.
Zachary just looked at him.
“We want our students to be happy,” Dr. Abato said. “But it’s up to us to figure out what is going to make the child happy. Not the child himself.”
Chapter Five
T
hey headed down a long corridor and took a turn. “We are leaving the reward rooms, and entering the treatment wing,” Abato explained. “You’ve seen what it is that the children are working toward, what their goal is as they work with our therapists. Now we get down to the nitty-gritty, and you see what exactly it is that we do here.”
“Great.”
The new corridor they entered was lined with rooms with viewing windows. So they could look into the various therapy rooms to observe what was going on without being seen by the child being treated. Zachary bit his lip. His stomach turned. He felt like a voyeur. The thought of someone else watching and listening to him during any kind of therapy session was repellent. He’d been through many different treatments and therapies as a child and as an adult, and he had always been told that what went on between him and his doctor or therapist was private. No one else would ever see or hear what he said or did. But at Summit, the residents were on display. Not just to other doctors or therapists, but to anyone who happened to be touring the facility during their session.
Zachary thought at first that they would just walk quickly past, catching a glimpse of the kind of work they did. But Dr. Abato looked down at the clipboard he was carrying with him and picked a room out. They didn’t stand at the hallway observation window, but went into an anteroom to the therapy room, where there was another window and they could sit down, turn on the speaker to hear what was going on, and watch the session as if it were the latest in reality TV.
Abato motioned to a chair and sat down himself. There was nothing Zachary could do but sit beside him, looking for a way to voice his discomfort.
“This is Raymond Maslen,” Abato introduced. “Age five. He has been coming here for about a year. He is not a full-time resident, but comes here for our day program. He is in therapy for forty hours a week and goes home to his mother and his family in the evening.”
“What kind of therapy?”
“What we do here is almost entirely ABA. That’s Applied Behavioral Analysis. It’s a system of reinforcing positive behavior and ignoring or imposing a consequence for negative behavior.”
Abato threw the switch to turn on the speaker so they could hear what was going on in the therapy room. Raymond had wavy hair, reddish brown, a bit on the long side, and the face of an angel. The woman who was working with him had masses of blond hair. She wore a purple smock and was just a bit on the heavy side. Raymond was laughing as she played a game with him, blowing his face with a red toy she held in her hand. Every time she blew his face and hair with it, he squealed with delight. She put the toy down on the table and looked at Raymond with a very hard, intense stare.
“You’re doing really good, Ray-Ray,” she said in an encouraging voice. “You’re having a good therapy day today, aren’t you?”
He looked at her as if he weren’t sure what she was talking about, then gave a nod of his head, sort of a diagonal lowering of his head that could be taken as a nod, but might equally have been a shake.
“You’re having a good day today,” the blond woman repeated. “You are, right? You nod your head.” She nodded her own head emphatically.
The little boy gave a more certain nod, but it was still somewhat sideways, as if he really weren’t sure and wanted some way out of it if challenged.
“Nod for Sophie,” the woman instructed. She straightened Raymond’s head so that it was perpendicular, and pressed his chin, encouraging him to nod. When that didn’t work, she put one hand under his chin and the other on the top of his head and put him through the motion of nodding straight up and down. “Good, Ray-Ray! That’s right!” she praised. She patted him on the cheek and tickled him under the chin. “Good boy, Ray-Ray.”
He clapped his hands excitedly. Sophie caught his hands and pressed them down to the table gently, stilling them. Raymond tried to clap again, and she pressed them more insistently to the table, held together. “No. Quiet hands,” she insisted. “No clapping. You can clap if we play a clapping song. Otherwise, keep them still.”
She held them for a moment longer, then lifted her hands off of his. He kept them still.
“
Good boy, Ray. Good quiet hands.” She kept her voice soft. Raising her voice would, Zachary figured, just get him excited and clapping again, which, for some reason, was forbidden.
“Now, listen to what Sophie says, okay? I want you to follow me and do what I say. Can you… touch your nose?”
Raymond raised one hand off of the table and looked at it, then looked at her, evaluating whether this was something he was allowed to do.
“Touch your nose,” Sophie repeated. She did not model the behavior, but waited for him to follow her verbal instruction.
Ray-Ray curled his other fingers in, leaving his index finger in a pointing position. He looked at her to see if he was doing okay so far. She didn’t give any indication whether he was doing well or not. The little boy raised his finger and very slowly moved it toward his face, eventually touching the very tip of his nose.
“Good job!” Sophie praised. “That’s right! You can have one lick of your candy.” She picked up a lollipop from a bowl next to her and held it out to him, allowing him to touch his tongue to it. Then she pulled it away and put it back down.
“Now touch your ear. Touch your ear, Ray-Ray.”
He moved more confidently this time, raising his index finger to touch the tip of his nose.
“No!” Sophie said so sharply that not only did little Raymond jump, but Zachary did too. She pulled his finger away from his nose and leaned closer to him, clearly into his personal space. “No, Raymond! I didn’t say nose, I said ear!”
His smiley face was gone, crumpling up like he was going to start bawling.
“No,” Sophie warned. “No crying. I want you to touch your ear. Do it now.”
His face froze. He looked at her for a moment, hovering on the edge of tears.
“Touch your ear,” Sophie repeated.
His Hands were Quiet Page 3
