As he positioned the lights in different sections of the room, Grattan watched Francisca work with Robertito. The situation had a distinctive make-believe quality. Was this the same child? The body and the face remained unchanged, but the little boy's current repertoire of behaviors differed dramatically from his prior preoccupation which consisted of flapping his hands and pacing across the room. The child's actions had purpose; he played with a puzzle, built a tower of blocks, strung beads, danced in definite rhythms and looked at people in the room. Doesn't make any sense, he thought to himself. For years, he had worked closely with clinics and treatment centers, taping and filming so-called developmentally impaired children in sequential order during therapy programs. Progress was barely visible over periods of months, sometimes years. They'd never believe it at the hospital. Too much. Too fast. He looked at the placid, perfectly formed face. He remembered the director of one program calling autistic children "the hopeless of the hopeless." Grattan did not want to be "done in" by tradition, he reminded himself. Nevertheless, he liked to digest the world in manageable clumps. What he observed this morning could not be catalogued among his previous reference points and he wasn't sure he wanted to throw away his old rule book.
The lights flooded the room with an eerie white glow. As I whispered some suggestions to Grattan, I noticed Robertito's startled response to the dramatic illumination of the room. He made a series of jerking motions with his head, then returned to the cymbals, which he banged together haphazardly. Grattan nestled the cumbersome camera by his head, adjusting the shoulder mount and strapping a leather support around his back. When I tapped him, he pulled the trigger, activating the video apparatus. Within seconds, Robertito broke from his work with the musical instruments and stared at the ceiling, against which we had aimed the lights in order to achieve a more even light saturation in the room.
"Yes, Robertito," Francisca said. "Lights. See the lights and the wires."
Unlike the first taping session, during which Robertito did not show any awareness of the lights or the cameraman, he responded quite definitely to this intrusion, becoming slightly hyperactive and agitated. Francisca lured him back to the box of instruments. She played the harmonica while Robertito hit the drum limply. He divided his attention between her and the moving figure armed with a large mechanical box from which a strange glass eye projected. The rapidly increasing heat from the lights also seemed to disturb the little boy. He pulled on the collar of his shirt and threw his head from side to side.
I opened the windows and suggested peeling off some of Robertito's garments. Although the room cooled quickly, his behavior became more erratic. He turned over the puzzle board and raced around the perimeter of the room, cooing and twirling his fingers frantically. The lights! Maybe it's the lights. My finger found the switch on one of the lamps, extinguishing its electrical source. Within minutes, Robertito relaxed notably, yet he still exhibited a listlessness I had not seen since his arrival. Grattan tried to keep taping, but finally shrugged his shoulders, unable to manage the correct exposure without a balanced lighting system.
After a twenty-minute break, with Grattan and myself out of the room, our little friend still acted restless and uncooperative. He flapped more and side-glanced rather than confronting people and objects more directly. With Roby joining us, we convened a quick meeting downstairs. They left the decision to me. I decided to try again.
This time, we introduced each piece of equipment to Robertito, encouraging him to touch the lights and the camera. He put his tongue on the lens and smiled. We showed him the switch, the battery pack and the extra reels of tape. Roby installed a portable fan in the window to extract the heat from the room. I asked Grattan to maintain a more unobtrusive posture, reasoning that the accumulation of sensory bombardment had overloaded Robertito, who, obviously, allowed more of the external environment to penetrate.
With the lights on again and the camera rolling, Robertito behaved with only a minimal of concentration. The tape would not be representative of his current status, yet, even with his surprising reaction to the filming, he still demonstrated an awareness and skill which dramatically transcended the scope of his responses and abilities less than two months ago. The tape captured the porcelain-like face and dark sparkling eyes. It recorded his "isms" as well as his understanding and skill with the insertion toys. Suddenly, he threw a cube and triangle against the wall. He banged his foot against the floor. His eyebrows furrowed, locking his face in a grimace. Robertito Soto appeared angry. I halted the taping immediately and rescheduled it for the following week. The bombardment of activity, lights and heat had illicited a reaction we had not witnessed before ... at least, not here in New York.
As the day dwindled into evening, Robertito began to increase his self-spinning, rocking and flapping. He no longer displayed an ability to build even the smallest tower. For one hour, he rolled on the floor and laughed hysterically. I found myself chuckling too, charmed by the spell of his joy. Twenty minutes later, he whined and pushed people away. Then, with no apparent provocation, Robertito cried. Love, attention, even food, did not break his commitment to howling and grumbling. When he finished, toward late evening, he remained somber, his eyes glazed ... almost the portrait of a junkie after his fix.
The aloof, withdrawn, blank-faced stare persisted the next day. He babbled to himself, smiled fleetingly at the wall and groaned without any visible focus. He did not permit any physical contact. I watched him from morning until night. A hundred, even a thousand, lights would never have disturbed him before. Now, as he began to turn more toward us, three floodlights had overdosed his fragile sensory apparatus. Rather than drown, he pulled back to his own lines of defense. Why not? Wouldn't I have done the same? Yet as I gazed at him, I couldn't help but consider how unimportant the tapes had been. Even in those first moments, I saw the overload, yet I persisted, wanting the video record for later comparison. Was it worth the trade?
"Wow," Laura whispered to me as she left her session with Robertito. Suzi's three hours consisted of little more than flapping, running and jumping. No eye contact. No physical affection. No interactions. In fact, he put more into his "isms" than before, as if he had to try harder to keep the external world out. When Suzi seemed exhausted, I worked with my little friend.
The second and third day after the taping mirrored the first, but now Robertito developed a distinctive Dracula-like style of curling his fingers rigidly in front of his eyes. When a book or puzzle was introduced, despite our attempt to be low-keyed, he whined and moved away.
The week crept by without any visible changes. Francisca and Roby reported some fleeting chest-banging and chin-hitting; old "isms," remnants of an unhappier time in Mexico. Robertito moved his arms and legs mechanically. Awesome. An enigma.
Francisca began her session enthusiastically. She turned on the tape and began to dance. He swayed slightly, but continued twirling his fingers. His mother moved closer and joined him. She took one of his hands and he permitted it. I held my breath. The first real sign of contact in ten days.
The little boy pulled away from his mother, dropped on the floor and made a crying sound with a crunched face ... but no tears. "Eee-o, eee-o," he whimpered. Francisca imitated him. He stopped immediately and cried again, louder this time, but still no tears. His eyes swelled with red rims. She tried to touch him, but he pushed her away.
"Okay, okay," she said soothingly.
He fell over into her lap and continued crying, His chest heaved spastically. His shoulders jerked each time he inhaled. Tears streamed down Francisca's face as she stroked his back. They stayed together in that position for almost five minutes; then Robertito crawled to a comer of the room. He stopped crying abruptly, hummed and rocked. When Francisca sat beside him, he moved away. "It's me, it's Mama." He cried again, then paused sharply and grinned at the wall.
She tried to touch him, to comfort him, but he kept moving, listless, agitated and unpredictable.
Robertito cried as a way of taking care of himself. Sometimes, he utilized it as a method to communicate on a primitive level. Other times, he used it as a barrier or a way to soothe himself, no different from the "isms" which he now shared with all of us.
I spent time alone with my little friend, at the end of the day. We tapped the wall together and babbled a thousand times. I kept looking for a key, a hook, but nothing came. Why? Stay in there, I counseled myself, stay in there and trust it. I found myself laughing in the midst of our parallel game. Trust what? Me? Option? You? I wanted to grab him and shake him and shout: "Hey, I love you. We all love you. C'mon, you can do it. You can!"
"Robertito," I said aloud, "I blew it with the lights. I'm sorry. I do the best I can, just like you. You don't have to go that far away to take care of yourself. Trust us. We've trusted you." The little boy never looked at me or acknowledged my talking. He picked up a drumstick and flapped it beside his head. I rummaged through the toys, found the other stick and followed his lead. "What can we do for you? No more video? Okay, no more video. No more games? Okay, no more games. You want to be alone?" I sensed his awareness of me in his peripheral vision. "You were having too much fun before ... too many smiles and giggles. Show me! Give me one hint!" His blank face stared at a point a foot below the ceiling. I traced his path with my eyes and saw only the yellow walls. "Que tu mira?" I asked in Spanish. "What do you see, Robertito ... I want to see too." My words went unheard ... but I wanted to stay with it, with him, as we then traveled around the room together, making hundreds of circles. Perhaps a circle would open, just a little.
The painted horses of the carousel glided up and down like surrealistic phantoms. Their eyes glittered. Whimsical caricatures carved in wood. Red saddles mismatched colorfully with yellow bridles. Green manes topped blue bodies. A little girl laughed and waved to her mother at each passing. Two six-year-old cowboys escaped from a tribe of imaginary Indians. A young man sat expressionless on his mount as he stared at the ceiling. The carousel had revolved on its axis for thirty-five years. An old mechanical No. 150 Band-Organ belted out honky-tonk melodies, a miniature steam engine for its heart. Waltzes. Polkas. Viennese marching tunes from the mid-thirties. The ticket collector, an old man in a solid green uniform, smiled. We watched the horses travel their endless circles ... triggering my flashes of Robertito's endless circles.
Bryn, Thea and Raun, firmly atop their mounts, held hands and watched the world whiz by. Suzi and I sat behind them, not as their parents, but as two more children immersed in the innocence of a child's world. Sundays. We had suspended our traditional Sunday family day for almost two months until the Soto program had developed its own momentum. Today, we reinstated it. We had wandered through the galleries in Soho and roller-skated along the avenues in Central Park which had been closed to vehicular traffic. The carousel mesmerized us. We could never leave the park without our ritualistic ride on our wooden friends.
As we strolled leisurely toward Fifty-ninth Street, Raun noticed the tops of the swings visible over the next crest.
"Oh, Daddy, Bears, please, oh, please, could we just stop at the playground?" Raun asked, wide-eyed and hopeful.
"Could we?" Thea said, reinforcing her brother's request.
"Sure," I said, holding Suzi's hand. "How could I deny such a beautifully stated request?"
Within seconds, all three of them burst into a full run.
"Be careful," Suzi shouted, her words melting into the city sounds of Central Park. "They're such great people," she said.
"I missed them," I added. "We've been so jammed. I missed the small talk, the bike rides, our races in the park."
"You said you had some thoughts about Robertito," Suzi said.
"Nope," I replied. "Not today. I consider it therapeutic to leave the program in body and spirit for at least one day.
We entered the playground through one of the open gates. Our children climbed on the wooden towers above the sand-pits. Suzi and I sat on a bench close to where Raun did his own brand of five-year-old gymnastics.
"We have to decide about Son-Rise soon," I said. "They called me again yesterday and finally agreed to almost all our terms. And yet, I feel hesitant. How about you?"
She laughed. "Declining TV movie offers has become a ritual for us. An 'ism."' We both laughed. "Sell us your book, then please disappear. But, Bears, this feels different, They want our participation. I don't know if we can get any more guarantees than they've offered."
"Suz, this is not a novel. It will be Raun's life on television ... maybe in front of 40 million people in one night. The producer, the director and the sponsor walk away after that night. They go onto the next project. But Raun and all the other autistic children, and that includes Robertito, can't walk away."
"But doesn't our writing the screenplay and consulting during the filming ensure accuracy?" Suzi asked.
"Only to a point."
"If you want to pass on it, I'm with you," she said.
I stood up and looked at my daughters. "I keep thinking about how many people we can reach ... it's just that I don't want the story butchered or compromised." I grinned. "I think you were right; we've held back so long it becomes hard to let go. That's my lesson this year ... letting go."
"I'm for taking the plunge," Suzi concluded.
"So am I," I concurred. "The first step is giving them the 'option,' which would definitely help us keep afloat next month. And that means at least another guaranteed month with the Sotos." I inhaled deeply. "Come here, midget," I said, gently pulling her to her feet. When I lifted her off the ground and hugged her, she giggled and bit my cheek.
As we lingered together, Raun whizzed by, flapping his fingers in a manner I hadn't seen for over three years. I snapped my head around in disbelief. Impossible! As he came around the far side of the tower, his hand motions were unmistakably autistic.
"Suz," I said. She faced the playground and gaped at her son. Her eyes bulged and her mouth dropped open. Suddenly I noticed another youngster moving in the same pattern as Raun. He, too, had the same peculiar repetitious hand movements. Our son turned away from the other child, waved to us playfully and then continued.
"Oh, wow," Suzi blurted, almost distrusting her eyes.
"Look. Just like Robertito," Raun shouted. "We're doing autistic talk."
"Great, Raunchy," I called. "You stay with him as long as you want."
We walked slowly to the fence, our mouths ajar, gawking at the scene before us. My eyes spotted another autistic child leaning against a wire fence. He flapped his jacket against his chest and rocked his head up and down. A little girl ran in a circle next to him. An older youngster marched in front of us, turned and marched back again. He never broke his pattern or deviated from his hypnotic endeavor.
It couldn't be! It had to be a dream or a joke or maybe both. In a city filled with 8 million people, how could we have taken our Sunday break right in the middle of a group of autistic children?
"It almost doesn't even feel real ... but it is," Suzi whispered.
A tall, thin girl started to scream and run out of the fenced area. As she loped across the field like a wounded duck, she banged her shoulders repetitiously. One young man, engrossed in a Frisbee game with two other adults, put his hand up. "I'll get her." He ran after the girl, collared her by the back of her neck and guided her return to a designated area. "Jennifer, you have to stay with the others. You hear!" The girl did not respond. He seated her on a bench next to an older boy whose facial expressions and body movements suggested retardation. "Watch her, Timmy," the young man commanded as he returned to his game.
I counted eight autistic children. The boy that Raun followed began to skip. Our son mimicked him. Another youngster stared at Raun's feet and smiled. "Look at your wonderfully crazy son," I said.
Suzi grinned. "It would be nice if each of these kids had a Raun to play with."
"Uh-huh." Then I thought of Robertito. So many people loved him. I felt a sense of peace knowing he would never be pulled by the neck. I turned to Suzi. "Somehow, in the last two days I've been pulling at Robertito, though it was only in my mind. I never wanted to do that again, not even in my thoughts."
Suzi grabbed my arm. "Don't even start thinking you have to be perfect."
"I'll settle for being reasonably happy."
Bryn took my arm and Thea jumped on my back
"Give me a ride, Daddy." Suddenly, she stared at the group of children in front of us. Slowly, she slid off my back and walked silently up to the fence.
"Bears!" Bryn said. "Are they..." She never finished her sentence, noticing Raun imitating one of the autistic children.
"Why isn't anybody with them?" Thea asked.
"Those people, playing with the Frisbee ... they're with the children," Suzi explained.
"Can't we do anything?" Bryn asked.
"We are," I said. "We're working with Robertito. The only real way to help is by the demonstration of your own life."
Thea tugged on my coat. "What's demonstration mean?"
"It's kind of like sharing with others through your own actions, in your own life."
Thea nodded her head, then watched the slender autistic girl whining on the bench. She ran on the other side of the fence and began to stroke the girl's arm. The youngster bolted from her seat, accidentally knocking Thea to the ground. A look of amazement appeared on Thea's face. Her lips quivered and puckered as she began to cry. I picked her off the pavement and held her tightly.
"I... I just," Thea stuttered, "wanted to, to be her friend. I didn't ... mean, mean to... scare her. I didn't."
"I know you didn't, Thee-Thee. Maybe she hasn't had very good experiences with people," I offered, "and so she wanted to be left alone."
"It's okay, Thea" Bryn said, taking her sister's hand in a motherly fashion.
"Raun, it's time," Suzi called.
"Five more minutes," he shouted back.
"Now," I answered. He flashed me a silly grin, said goodby to his friend and scooted to our side.
As we began to walk toward the path, a chubby, ten-year-old autistic boy ran along the fence beside us. He stayed within the designated area as he repetitiously sang one stanza from an old popular tune. His hands moved like a conductor's before an imaginary orchestra. When he passed us a second and third time, the words became clearer and clearer. The child kept singing one refrain.
"I can make all your dreams come true. I can make all your dreams come true. I can make all your dreams come true."
Two weeks crawled by. Robertito continued to find solace inside of himself. Refusing to participate, he paced and "ismed" all day, each day. Although we paralleled his motions and stayed with him, we could not break the veneer. The irritability and shrieking, which erupted immediately after the video session, persisted.
However, when Laura arrived to take the session after Roby, she noted, with surprise, Robertito's peaceful expression. No crying. No whining. No listlessness. "Now don't get too excited, Rha-Rha. You never know. Just let it happen." Since the night she pulled Robertito from the bath, her ease and caring for the child had flowered. The softness which blossomed in this workroom began to extend into every area of her life.
"Here we go, Robertito," she said, presenting a puzzle board to her student. At that instant, he climbed sluggishly to his feet and stared at a point on the wall near the ceiling. "Still out to lunch, huh?" she whispered. She stood up beside him. "You see something there? Huh? Tell Rha-Rha." Robertito ran to the window, looked outside, then turned and jumped. Laura imitated him for over five minutes. "I know what you're doing, my love. You don't want me to have to go to the gym. That's it, isn't it?"
The little boy flopped to the floor. He retrieved a puzzle piece without any direction or encouragement. Very softly, Laura clapped, maintaining the more sedate posture we had all assumed during the last two weeks. She stroked his arm and he did not pull away. As she moved her fingers along his skin, she realized the implication of his acceptance. He had not allowed affection in weeks. "Oh, sh*t," she shouted, trying to contain her excitement. "You're ready... so am I. Let's see now. Give me the pig. Oink. Oink. The pig. Give me the pig."
Very slowly, his hand glided over the board, back and forth four times. Finally he lowered his fingers, grabbed the pig form and dropped it on the rug. "Oh, that's wonderful. I mean, Robertito, you did it." Though he had previously, weeks ago, been able to locate the horse and cow form, never had he been able to identify the pig form on request. He retrieved the chicken, the duck, and the dog forms. "You're a genius," she hooted.
"Now let's see," she mumbled aloud, extracting the tool bench from its carton. "We'll try something new. Right, Robertito. We can at least try." She demonstrated the use of the hammer. He banged the plastic nails easily through their respective holes. She illustrated the use of the oversized screwdriver. He had extreme difficulty controlling the tool, but made several strong attempts to use it properly.
Suzi arrived next. She found Robertito's return awesome. She thought about the children in the park as she massaged his hands. Together, they played the marimba, the chimes, the drums, the xylophone and the battery-operated toy piano. Occasionally, he "ismed" or paced across the room, but, most of the time, he worked with the insertion box, the beads and the tool bench. Suzi brought him into the bathroom, where they played in the sink with soap, small boats and bubbles.
Since he had asked for "co" four times during her session, she decided to try to teach him other sounds. She held a three-dimensional replica of a cow in her hand and said "moo." She repeated the demonstration with the cow puzzle piece and the cow picture in the book.
"Hey, sweet boy. Mooo," she droned, bouncing the plastic animal along the rug as if it walked. "Moo. Moo."
Robertito grabbed for the form, stared at it directly, then flapped it. Two seconds later he put the piece in his mouth. He grimaced.
"Not to eat, silly boy. It's a cow. Moo."
Robertito squinted his eyes peculiarly. The muscles in his face contorted as he belched out his first "oo" sound.
Suzi cheered and hollered. By the end of the hour, he had added, in rough form, the "m" sound in front of the "oo" sound, making a noise distinctly like a cow. Two hours later, she had him approximate a dog's bark. "Robertito, I can't believe you. Full of surprises, aren't you, sweet fellow." She kissed him enthusiastically, a gesture from which he withdrew. "Sorry for the assault, I just get carried away." He rocked gently and side-glanced at her. Suzi thought of how lucky she was to be sharing these special moments and feelings with Robertito as she had with Raun in the bathroom.
Carol began her first solo session with Robertito on this very special day. I had to force myself to concentrate on her, for this little boy's return triggered an avalanche of thoughts. Because we had let him leave, he felt free to return. That incredible awesome calm had returned. Because we had loved him without conditions, he found comfort in our extended hand. I knew he didn't have to make that choice. He could have remained in the secure womb of his inner universe. I wanted to thank him, to shout hurrah. Robertito had become more than Francisca's and Roby's son, he had become everyone's child ...mine, Suzi's, Laura's and now Carol's. I felt this incredible pulling, almost craving, to leave my position at the side of the room and hug and squeeze my little friend.
Refocusing my attention, I watched Carol dance lovingly with him. I detected a certain nervousness in Carol's actions. Though she followed his "isms" and worked smoothly with various toys, at times, her manner of speaking dulled, becoming monotone. Carol held back. Her mimicking did not match Robertito's intensity. Her applause and facial expression needed more animation. Perhaps my presence diverted her ... perhaps she still had to integrate her evolving awareness with her body language.
In each instance, when Robertito changed direction or refused her initiative, she followed his cue. The beauty and softness of her accepting attitude was evident throughout the session. Yet, I suspected, her willingness to suspend all judgments with Robertito had not been equally extended to herself. But Carol felt right in this room and, like all of us, she struggled to find the Spanish words to express herself. Although Robertito did not respond to her as much as to Francisca or Suzi, he glanced at Carol with surprising regularity and smiled easily three or four times during the session.
Before he went to sleep, I tried to teach him how to assemble the facial features of the potato-head toy; first the eyebrows, then the nose, the lips, the ears, the eyes and, finally, the hat. I tried six different times. On the seventh attempt, he put the nose and hat in place by himself. I cheered and tickled him. He giggled then rolled into my lap. His little hand stroked my leg.
Seconds later, he sat upright. I held the potato-head and pointed at the nose.
"Here we go, Robertito. What's this?"
He peered at the goofy brown form curiously, then said "moo."Chapter 16