Chapter 24
Francisca flipped the pages in the
magazine for Robertito, who consumed the splashes
of colors, shapes and forms with eager eyes. Spontaneously,
he pointed to a car and identified it verbally, then
he stared at a smiling face and said the word "happy."
Both Suzi and I joined Francisca in cheering him as
we sat together in the waiting room outside of Carl
Yorke's offices. Almost four months had elapsed since
the last developmental work-up.
The door to the other office finally
opened. Dr. Yorke, sporting a reserved grin, motioned
to us. Suzi, who would again act as translator, invited
Robertito to follow her into the other room. He trailed
after her without hesitation. The doctor asked me
to join them so he could review with us certain questions
and the battery of tests he planned to-administer.
In spite of Robertito's intimacy
with both Suzi and me, he approached the psychologist
first. Carl, noting our little friend's initiative,
tapped his own legs in an affectionate gesture. To
his surprise and ours, Robertito jumped into his lap.
"Hola!, Robertito," Yorke blurted.
"Hola!," the child replied.
"Yo quiero agua."
"Water?" Carl asked, glancing
at us for verification.
"Si, si," Suzi nodded.
"Mas tarde, Robertito."
"You people are unbelievable.
You mean this boy is not only saying words, but he
talks in sentences?"
"Not big ones," I assured
him.
Carl smiled. "How do you do
it? It's been less than four months. Last time I saw
him he could only say the first syllable of a few
words." He looked back at the child and smiled.
Robertito took his hand and stared
into the man's eyes. "Cafe ojos," he said,
identifying Carl's brown eyes.
"Fantastic," the psychologist
said boisterously, registering his own delight as
well as responding to his own natural impulse to congratulate
the boy. He still found himself amazingly attracted
to Robertito. Yorke shook his head, peered at Suzi
and me, then pointed skyward. "I'm telling you,
they already have your places reserved up there."
After the completed examination and
a short conference with us, Carl stood at his door
and watched Francisca help her son put his coat on.
"Mrs. Soto's a very lucky lady,"
he said.
"Lucky?" I questioned.
"She helped make this happen ... every step of
the way."
"We make our own luck,"
Suzi offered.
The psychologist grinned his affirmation.
His attention focused back on Robertito. "I've
never seen it before," he said. "Really,
folks, if this little boy never learns one more thing,
what you've done here is still a miracle."
Francisca sat beside her son in the
back seat of the car. Suzi leaned over the front seat
and played with Robertito. I rattled off all the quick
statistics the psychologist had accumulated during
the testing. Her son's I.Q., a factor which supposedly
remains fairly constant throughout a person's life,
had jumped dramatically again ... from 14 to 30 and,
now, to over 45. His total language capability, initially
on a one- to two-month level, had soared. His expressive
vocabulary had reached a three-year-old level and
his ability to understand approached a four-year level.
Even Carl, in relating the figures before submitting
the written report, found the comparisons startling.
As I completed my enthusiastic monologue,
I noticed Francisca's rather sedate expression. "Hey,
aren't you excited? Listen to the man's findings."
"The doctor's report is not
important," she said with unusual calm. "I
used to think it meant everything, but not now. I
know my son better than anyone. I can see he has changed.
I can see how much he has learned. That's what is
important.
Suzi and I glanced fleetingly at
each other. In that instant as she spoke, in that
recognition of what she knew, she had affirmed her
own power and her own authority. Although she valued
the caring and expertise of Dr. Yorke, she realized
that she could correctly assess and understand her
own child's ability and situation. She knew the test
scores and data gave us an additional way to plot
growth, but her excitement and appreciation would
no longer be tied to figures or intelligence quotients.
Francisca prized, unconditionally, the flesh-and-blood
child next to her. I wanted to stop the car, leap
over the seat and hug her. I considered shouting as
a lesser celebration, but the peacefulness in her
face aborted my impulse.
"You are a very special lady,
Senora Soto," I said.
Francisca smiled self-consciously.
She did not feel special or even different. But then,
as she turned to her son, she sensed a new kind of
strength, one more secure, more reliable, begin to
blossom within her.
*****
Yorke's report confirmed the various
areas and stages of Robertito's recent development.
"This boy had been worked with
continuously by Mr. and Mrs. Kaufman and their staff
since he was last seen about four months ago. He can
now say about fifty words in Spanish, can say short
sentences, has improved his weight-lifting ability,
recalls names of people and says them and apparently
he's more socially competent, more socially assertive
and more affectionate.
"Robertito was tested while
Mr. Kaufman's wife, Suzi, was in the room. Mrs. Kaufman
constantly spoke to the boy in Spanish after receiving
instructions from the psychologist.
She would very frequently hug and
kiss the boy if he did things correctly. She encouraged
him constantly without giving him answers or leading
him. The psychologist is somewhat knowledgeable of
Spanish and could readily understand the direction
she was giving to him and would stop her if, in any
way, she was directing the boy or inadvertently leading
him to answer.
"Robertito's behavior during
testing can be characterized as much better than it
has ever been before. He was more cooperative, he
followed instructions better and his attention span
had improved. He expressed his ideas more clearly.
Most impressive was the fact that he no longer flapped
his arms; he no longer ran around the room; he came
over to the psychologist and talked to the psychologist.
He did not stand on the desk as he had done during
the first examination and his ability to focus attention
on the tasks at hand was infinitely better than when
he had been tested on previous occasions.
"From a social point of view,
it was noted that the boy now focuses in, his behavior
is more appropriate, he looks at people, talks to
them, touches them and listens. He does not withdraw
and seems much less restless. He certainly is less
autistic than he had been. Occasionally, he will flap
his arm around but at no time did he withdraw or spin
around or do something that was totally inappropriate;
i.e., like standing on a desk. The boy appears more
confident of himself, is certainly much more conforming
and he relates better. He shows his intelligence more
now because he is more interested in the environment.
His frustration tolerance has improved and he now
attacks tasks more efficiently in a less disorderly
way than he had previously.
"In terms of gross motor coordination,
it was noted that now the boy can catch a ball, whereas
he was unable to do this before. In terms of fine
motor coordination, he is now able to copy a circle,
imitate a bridge using blocks and hold a pencil more
adequately. He can now get a drink by himself, dry
himself and he tends to avoid simple hazards. He is
now going to the toilet by himself, but is unable
to wipe himself.
"It was noted that he now talks
in very short phrases of two and three words. He could
do such things as tell you his full name, repeat three
digits, name colors, respond to simple commands and
recognize common objects. It was noted that Robertito
is now able to understand prepositions, he can name
body parts, he can sing rhymes and songs and is beginning
to act more verbally appropriate.
"There has been an infinite
improvement in the boy's overall behavior in all areas
since he was last seen.
"When Robertito was first seen,
seven months ago, he showed symptoms that were rather
classical of an autistic child. At that time, during
the initial testing, he spent most of his time running
around the room, he tore papers, he never said any
words, he showed inappropriate behavior and would
run around in circles. At that time, he made only
random sounds, never looked at the psychologist, would
show inappropriate motor behavior such as jumping
up and down or running without provocation or would
merely spin around. At that time, he did not listen
to requests and did not respond to either auditory
or visual stimuli. At that time, he did not relate,
did not say any recognizable words, look at or listen
to people. At that time, he was occupied with objects,
was restless and never uttered an understandable word.
When first seen, his receptive and expressive language
was on about a 1 or 2 month level and his I.Q., at
that time, was on about a 7 month level despite his
chronological age of over five-and-a-half. He did
not show any indications of being able to do anything
of a fine or gross motor nature and was socially inept.
"Now, he was able to understand
words on a four-year-old level and his expressive
vocabulary was on a three-year-old level. His I.Q.
had increased from under 14 to over 45. The boy's
progress has been remarkable in all areas."
*****
I couldn't help but think about all
the hospitals, clinics and physicians that had dismissed
this special little boy as hopeless. They assured
the Sotos he would not be able to think and talk,
that even their "clinical" evidence supported
the conclusion that he would live out his life in
little more than a vegetative state. When I tried
to conjure up the image of that ghost town in the
left frontal lobes of his brain, I imagined only activity
and sparks of energy. My thoughts drifted to Roby
and Francisca. I wondered who, indeed, had learned
more ... they or their son?
Several days later, the bearded Paul
Goodman arrived to do his follow-up psychiatric evaluation.
When I offered him herbal tea, he answered affirmatively
this time. Francisca, who had become openly skeptical
of all tests and evaluations, greeted the psychiatrist
enthusiastically. Despite her point of view, she felt
indebted to this man. He had offered his time graciously,
a fact among many which had helped change her perspective
about people since her arrival in New York.
While I waited in the living room
of the Soto house, I remained acutely sensitive that
today had been the downside swing of the seesaw. Sometimes,
the intense energy required by this little boy in
order to learn sapped all his reserves. He had to
rest, to pause, to regenerate. Robertito balanced
himself between our world and his, not as a statement
about us, but, perhaps, as a way to ensure his own
survival. Every new word, new concept and new activity
required more than his utmost attention; he had to
push himself to the limits, pulling his cargo along
rusty tracks. Yet, despite the inconsistencies and
the back-and-forth wavering, the curve of learning
still soared upward. We had hooked him with our joy,
enthusiasm and love, but I wondered, even now, whether
he had found his own compelling reasons to be with
us.
After the examination. Dr. Goodman
lingered on the staircase.
"So?" I asked.
"Sometimes, he holds onto the
autism," Goodman observed.
"We always allow him that,"
I answered.
"I know you do. And obviously,
there's something to it. When I first heard him talk,
I couldn't believe my ears. How? In such a short period
of time, or in any period of time, how'd you do it?"
"We didn't do it," I assured
him. "Robertito did it for himself."
Paul nodded his head and smiled as
he began to descend the stairs.
"Robertito has now been worked
with on an intensive daily basis for seven months,"
Dr. Goodman summarized in his report. "He spends
virtually all of his waking hours involved in his
treatment program. He has continued to make dramatic
progress, although presently his behavior is characterized
by frequent shifts in levels of functioning. For example,
he has periods of seemingly 'almost normal' periods
followed by regression to his old state of being very
unrelated.
"Toilet training has progressed
to a point where Robertito is almost totally bowel
trained. He is mostly trained for the bladder during
the day, but still wears diapers at night.
"At the onset of the program,
it was discovered that Robertito had diminished touch
and pain sensation on the right side of his body,
especially his right hand. Also at that time, he was
unable to support the weight of his body with his
hands. Exercises were then developed to strengthen
these weaknesses. Robertito is now able to support
is weight with his hands and can be lifted up and
down while holding onto a bar.
"Language ability has been steadily
increasing. In comparison to the total lack of language
and pre-linguistic ability at the onset of the program
seven months ago and the approximately ten word monosyllabic
vocabulary noted four months ago, Robertito's spontaneous
vocabulary now is at least fifty words. He is able
to form a sentence when he wants something. He is
now learning concepts such as 'same-different,' 'up-down,'
and other pairs of opposites. He knew the sounds animals
make. He sings songs. He is learning to distinguish
geometric shapes. He mumbles words to himself even
when not being directly stimulated.
"In comparison to the totally
unrelated, self-absorbed and self-stimulating activities
when seen initially, Robertito's relatedness to other
people has not only developed, but continues to expand.
He pays more attention to what other people are doing
in the room even when they are not trying to involve
him. He will approach people spontaneously to join
in what they are doing. Robertito will hug and show
affection spontaneously.
"Compared to the baseline observation
seven months ago, Robertito is now quite a different
child. He has lost none of the gains noted at four
months into the program and has made substantial progress
since then. At present, there is a greater unevenness
to his functioning, he can change abruptly from a
state of attentive learning to one of autistic withdrawal.
When he is paying attention and involved with the
therapist, he gives the impression of a neurologically-impaired
child who must make a great effort to receive and
decode what is being presented to him and then to
organize and produce the correct response. Robertito
must experience a great deal of fatigue, which I think
is one of the reasons for the greater degree of restlessness
and more frequent periods of withdrawal. It is tempting
also to compare this to the irritability and mildly-regressive
behaviors often seen in normal six-year-old boys.
"In contrast to the initial
examination, when he did not talk, and to four months
ago, by which time he had developed the ability to
say the first syllable of approximately eight words,
he now demonstrates the ability to communicate and
verbalize his wants and interest by spontaneously
saying complete words - and, in some instances, short
sentences. As a rough approximation, his abilities
range to a thirty-six-month level. This is quite a
significant and impressive movement from when first
observed, just seven months ago, when his general
behavior had not developed beyond the first few months
of life."
In effect, both the psychological-developmental
and psychiatric examinations recorded a developmental
surge of three-to-four years in a seven-month time
period.
*****
"Why are the walls painted green?"
Carol mumbled to herself as she waited in the reception
area of the school. They must reserve all the green
paint for hospitals, schools and institutions. She
wiggled her foot as she itemized the varied achievements
with Robertito during the morning session. His ability
to cut with the scissors had shown a dramatic improvement.
They had played memory games together. Each time she
rattled off three or four objects or unrelated words,
he would repeat them easily. Once, he actually managed
to remember five words in a row. Carol felt a certain
pride in having introduced the concept of first, middle
and last. In only two days, her young student had
mastered the notion with about 80 per cent accuracy.
Robertito also demonstrated his ability to count up
to twenty. In the month since the tests, he had already
outstripped the new base lines.
A man in his early forties, impeccably
dressed in a tan suit, appeared at the door and beckoned
to her. Mr. Sharp had been assigned by the director
to give Carol a brief orientation before introducing
her to the other teachers and their program. As part
of a seminar course and her student teaching responsibilities,
she had to observe and research various special education
programs. This particular facility had been noted
for its work with all kinds of handicapped and developmentally
disabled children, having a section specializing in
autistic and autistic-like youngsters. Mr. Sharp queried
her about her own experiences. When she talked about
our program with Robertito and the previous one with
Raun, the man smiled indulgently. He assured her that
any child worked twelve hours a day-would improve.
Carol tried to explain to him about the summer, how
they all had worked those same long hours with, unfortunately,
unproductive and, potentially, disastrous results.
She tried to talk about attitude, but Mr. Sharp discontinued
the conversation politely. He directed her down a
long corridor and into a huge classroom in which she
met three teachers.
Carol spent the remainder of the
day observing and, at times, trying to participate.
Six teachers worked with a population of thirty-five
autistic children, ranging from nine years to fifteen
years old. Most of the students had a glazed, drugged
appearance, although one of the teachers insisted
that despite the fact that some of the children had
been placed on medication by their private physicians,
the school neither prescribed nor administered any
drugs.
"Come with me," Mrs. Doren
said, guiding Carol into a second classroom, smaller
than the first. The woman smiled. "We call this
the wing-ding ward."
A group of students stood in a long
line. Some rocked in place, others stared at their
hands or the floor, still others made distinctively
peculiar gestures, often repetitive in their occurrence.
The first child in line, a little boy, walked toward
the far wall holding a green hanger out in front of
him.
"Jimmy, do we have to do this
a thousand times until you'll finally understand?
Not against the wall. The hanger goes in the box.
In the box! Do you understand?" The teacher,
obviously exasperated, crossed his arms in front of
his chest. He squinted his disapproval.
The little boy turned to him nervously
and grinned in confusion. His feet appeared cemented
to the floor.
"We don't have all day,"
the man barked. "Jimmy, put the damn hanger in
the box."
A young woman, perhaps only a few
years older than Carol, paraded into the center of
the room and knelt in front of the child. "Either
you do it on your own steam or I'm going to have to
bring you there." Jimmy began to rub his hands
and hum. "Okay ... have it your way," She
grabbed his arm and pulled him away from the wall.
At first he resisted, but then he stopped his ten-second
tug-of-war. When he arrived at the carton, he dropped
the hanger into it.
"Now you can wait at the wall."
The boy did not move. The young teacher sighed noisily,
took the child's arm and pulled him to the side of
the room.
"Next," the man chimed
like a drill sergeant. Mrs. Doren excused herself
in order to deliver another green plastic hanger to
the next child in line. "Okay, Sharon, in the
box it goes." She inched toward the carton as
if approaching a bomb. Finally, about four feet from
it, Sharon tossed the hanger without looking and ran
to the wall. It missed its mark. A fourth teacher,
who, had been sitting at the desk, rose to her feet
and promenaded into the center of the room. She flipped
the hanger expertly into the box.
Carol couldn't close her mouth, nor
could she neutralize the acid taste burning in her
throat. The class taskmaster joined her. "My
name's Foley, Jack Foley." He eyed her parentally.
"Listen, you get used to it. Have you ever seen
autistic children before?"
"I work with one," she
whispered.
"Ah, then you know,' the teacher
grinned. "It's sad, but this is a wasteland.
You need a firm hand to keep them in line."
She tried to ignore his comment.
For a moment, she couldn't believe her own thoughts
... she actually considered physically attacking the
man. "Why the hangers in the box? What do you
hope to teach them?"
"Nothing," he replied casually.
"We've long since given up trying to teach them.
The goal, young lady, is to keep them busy."
He strutted back into the arena, belching out his
orders to the inattentive youngsters.
Carol peered at a little boy with
sandy brown hair and piercing dark eyes. That could
be Raun. She watched another youngster, a beautiful,
slightly pudgy child with jet black hair. That could
be Robertito. And what about the blond-haired girl
with bangs? And the handsome black child twirling
his hands gracefully in front of the windows?
She felt lighthearted. For a second,
Carol thought she might lose her balance. She refused
to recognize these sensations as signs of an oncoming
seizure. Almost three whole months had passed since
her last one; an amazing record, especially since
she had not taken any medication in that time period.
They're doing the best they can, she thought to herself.
They are! Based on what they know and believe. Stay
with it, she counseled herself. Stop judging them
... just be here now. The anger dissipated as she
refocused on the activity in the room.
Mrs. Doren returned to her side.
"There's so much you can do," Carol offered.
The older woman nodded. "That's
what I said when I graduated school. But you get used
to it. There's really nothing much you can do. Trying
to teach these kids is like banging your head against
the wall."
"But why do you believe that?"
Carol protested. "Have you ever taken one, just
one, and tried?"
The woman gaped at her. "What's
this ... an inquisition? Listen, Carol, you're our
guest. If you want to start a crusade, you've got
the wrong place."
Carol followed the teachers and the
class into the cafeteria. Most of the children seated
themselves at four tables, but some were pulled, pushed
and, literally, shoved down onto the benches.
One little boy sat on the floor by
the side wall and twirled a piece of paper. Relieved
to be able to concentrate her attention, Carol slipped
between the rows of benches and chairs, pulled a soiled
napkin from the garbage pail and sat beside the child.
She ripped her paper to duplicate his and imitated
his motion. Within seconds, the boy stopped and looked
at her. A tiny smile wrinkled his face as he now continued
his "ism." Carol followed him, finally feeling
connected. "Wow," she said, "you sure
are good at it." She touched the little boy's
leg with her hand. He stared at her fingers as he
twirled the paper.
"Bobby," Jack Foley shouted,
"what the hell do you think you're doing?"
He directed his question to Carol as much as to the
boy. The man slapped Bobby's hand down, then pulled
him to his feet. "Let's go. I'm putting you at
table four today." As they walked away, the child
turned back to steal a glance at Carol. She ground
her teeth. Her body felt stiff and brittle.
Later, as she sat at a table, trying
to engage some of the children, a boy knocked over
a container of milk by accident. The avalanche of
white liquid hitting the floor attracted everyone's
attention. In a fury, a teacher Carol had not seen
before, approached the table. She pulled the child
out of his chair. The boy went limp and slid to the
floor. Frightened, he tried to curl himself into a
ball. The teacher grabbed him by the hair and jerked
him off the floor, then forced him to sit in a comer
of the cafeteria.
"That kid's always doing things
like that," one teacher muttered.
"You can't leave them alone
for a minute or all you'll have left is a zoo,"
another added.
Carol forced herself to approach
the other teachers. "Have you ever thought of
going with these children, doing what they do, instead
of stopping them?"
"Ah ha!" the younger teacher
remarked. "I see you've been doing your reading.
I've heard about a book, about some family who did
that with their own son. If you believe it, then you
probably also believe in Santa Claus."
"Have you ever read it?"
Carol asked.
"I don't have to," she
answered, then turned away.
As she walked through the lunchroom,
Carol tried to remember each child's face. She didn't
know why it mattered, but it did. Each face was a
life ... a Raun, a Robertito, maybe even a Francisca,
a Roby, a Jeannie, maybe even herself. She knew that
what she did with Robertito had been right. Carol
also knew that what she had done with herself had
also been right. At the door, she paused. She turned
and saw a room full of anger, fear and unhappiness.
She wanted to do so much, but felt so helpless. And
then she remembered a saying she had read on a poster.
"If you save one person, one child, it is as
if you have saved the whole world."
Carol ran down the empty corridor.
She did not go home that night, but returned to the
Soto house ... to Robertito.
Chapter
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