Chapter 15
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
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