Chapter 1 Continued
MONDAY - The First Day
Sasha arrived first, her black shirt
tucked neatly into her black pants, a green knapsack
strapped tightly to her back. She might have been
a pallbearer in a military funeral or a renegade bohemian
from a Greenwich Village which no longer exists. Yet
a soft, almost vulnerable smile tempered her harsh
appearance. Sasha had volunteered to help with meals
and the care of our children while we worked with
the Mexican family. Since Bryn, Thea and Raun attended
school until three in the afternoon, she delighted
in having the opportunity to observe.
Several minutes later, a taxi deposited
the Soto party at our front door. Jaime Ankrom bowed
slightly as he shook my hand, then Suzi's. His plaid
sports jacket framed a starched white shirt and tie.
Wisps of hair barely covered his huge head, which
sheltered deep-set eyes and offset thick jowls. With
great dignity, he introduced Roberto Soto, a tall,
handsome man in his late thirties. Dressed more casually
in a walking suit, he bowed his head humbly as he
took my hand.
Francisca, tall and full-figured,
waited with her son. Long, silky black hair dipped
just beneath her high cheekbones, accenting her classic
features. She searched our faces carefully while being
introduced. Her penetrating eyes peered boldly into
ours. A hesitant, half-smile fluttered across her
face.
Robertito bounced rhythmically up
and down on his toes. He made a clicking sound with
his tongue as he pulled at his mother's hand, obviously
trying to release himself from her grip. Francisca
resisted, knelt down and addressed him with great
affection. Her subtle eyebrows and animated face accented
each thought. But her words fell on deaf ears, her
warmth never penetrating the invisible wall encapsulating
her son. A great sadness clouded her eyes as she rose
to her feet. Holding back tears, she avoided looking
at us directly.
Still unresponsive and mute, Robertito
continued flapping his free hand in the air.
Our guests seated themselves stiffly
on the couch in the living room. We faced them in
silence. Only soft smiles passed between us for those
first minutes. Their sensitive faces rippled with
moments of anxiety. Francisca tried self-consciously
to stop her son's flapping hands on several successive
occasions.
Suddenly, Roby swallowed noisily,
then cleared his throat. He pulled a pile of documents
from a large leather briefcase which he carried, then
began to recount in detail their experiences with
Robertito. Jaime meticulously translated each word,
each detail, even the implicit attitude between the
words. Roby gestured emotionally as he spoke. Each
time he glanced at his son, his voice cracked, his
eyes watered.
In combination, the papers presented
a confusing computer-like smorgasbord of conflicting
reports and diagnoses. Three described Robertito Soto
as definitely autistic with a grim prognosis. Two
labeled him authoritatively as severely retarded;
one further suggested the boy was uneducable. Another
hypothesized brain damage resulting from an undetected
case of encephalitis. The most recent report talked
vaguely about an atypical schizophrenic condition
complicated by unknown biochemical irregularities.
Pages and pages filled with complex four- and five-syllable
words; abstractions grounded in theoretical judgments,
several of which were concluded after only fifteen
minutes of testing. Yet, not one of these clinical
work-ups clearly suggested a mode of treatment. Not
one analysis captured by description or inference
the particulars of the child facing us.
As his father spoke, little Robertito
sat awkwardly on the couch. He moved his body like
an infant just learning to sit upright. An occasional
murmur erupted from his throat. The incessant hand-flapping
continued unabated. And yet, his face appeared serene.
"Senor Soto says these reports
have not been very useful," Jaime translated.
"No more useful than all the programs the boy
has participated in."
"Ask him why he chose to show
them to us in such detail?" Another pause for
the necessary translation.
"He says he wanted to illustrate
that they care very much for their son and did not
come here as ... how do you say, as ... as innocent
or naive people."
I nodded my head, peering first into
Roby's eyes, then into Francisca's. We, too, had once
jumped through the same hoops to no avail.
Quietly, like a cat, Sasha slipped
into the room carrying a tray of coffee and tea. She
also brought a large glass of juice for Robertito.
Francisca immediately led her son into the kitchen,
fearing he might suddenly decide to throw the glass
or dump it on the couch. Often, when he finished drinking,
he would relax his hand in an absent-minded fashion,
allowing the cup or glass to drop to the floor. When
they returned to the living room, Suzi sat on the
rug beside Robertito. She stroked his leg very gently.
When he pulled away, she smiled, slowly withdrawing
her hand. Robertito seemed to increase the flapping
motion.
As I turned to address Jaime, I realized
when any of us spoke, we looked at the maestro instead
of each other. Bending forward, I purposely faced
Roby and Francisca as I talked. "Jaime, tell
the Sotos that I very much would like to look at their
faces when we talk, that our eyes carry very important
messages for each other. Tell them our words are just
one way to speak."
As Jaime translated, they smiled,
nodding their heads affirmatively.
"And I will address you directly,"
I continued. Then I turned to Jaime. "Instead
of saying 'they say' or 'Senor Soto says,' would it
not be more direct just to speak their words?"
"Senor Kaufman, the role of
interpreter is new for me," Jaime said. "I
usually translate written matter. Your suggestions
are helpful. I will learn these fine points ... ah,
on-the-job." He smiled, enjoying his own ability
to use idiomatic expressions.
"Okay," I laughed, deciding
to make one last suggestion, "I want to address
you by your first names, Please feel free to do the
same. Most people call me Bears, a nickname Suzi and
the children gave me. In our home, we're very informal.
For the next few days, we will be one family with
one common purpose."
Jaime considered my words, but insisted
on addressing me and Suzi more formally as a sign
of respect. The Sotos welcomed the warmth.
We decided to work directly with
Robertito the remainder of the day, at least until
dinner. Then, in the evening, we could deal with Roby
and Francisca ... exploring their feelings and attitudes,
all significantly related to any program they would
institute for their son. We preferred to be alone
with Robertito, without any distractions. We offered
the Sotos our car to transport them to a local hotel.
Jaime gallantly doubled as chauffeur.
Suzi led Robertito into the bathroom,
the same one we used with Raun. It provided us with
a simple non-distracting environment ... no dazzling
wall pieces, no busy windows, no mesmerizing lights.
The confined space also kept the child in close contact
with us.
We sat opposite each other, our backs
planted firmly against the wall. Robertito walked
aimlessly around in circles. His body seemed clumsy
as he tiptoed on the tile floor. Both his hands flapped
vigorously. We began to note several distinctive particulars.
Robertito never looked directly at
anyone or anything yet he obviously could see. When
Suzi lifted an oatmeal cookie from her pocket and
held it in front of him, he either did not see it
or ignored it. Yet, when she brought it around to
his side, he immediately turned and grabbed for it.
Robertito absorbed much of his environment using peripheral
vision. In that manner, he could easily watch his
flapping hands at the side of his head.
Despite his preferences for perceiving
the world tangentially, we did notice that he looked
directly at the cookie when he grabbed for it, though
he maintained that focus only momentarily. In another
instance, when Suzi sensed him preoccupied with the
faint sound of a distant siren, she snapped her fingers
right in front of his eyes. No response. Not even
a flutter in his eyelids or eyeballs. Apparently,
he had the power to blind himself, to shut off his
vision in order to concentrate on his other senses.
Although generally unresponsive to
most sounds, this little boy paid careful attention
to soft, almost imperceptible, noises. We turned on
the tape recorder which we had placed in the bathtub.
The room filled with the melodic and lyrical piano
music of a Chopin's nocturne. Robertito moved his
head from side to side. He made the strange clicking
sound with his tongue. An awe-struck expression lit
up his face. Something about his gaze reminded me
of the peaceful, wide-eyed stare of a Tibetan monk.
We watched him be what he could be,
do what he could do, and wondered about the doctors
who once tied his hands to stop him from flapping,
the psychologists who wrapped him in a rug and dragged
him screaming across the floor, the behaviorists who
slapped his hands and finally his face because he
did not conform to a specific task. We thought of
the physician who suggested electric shock treatment
to correct all the "bizarre" and "intolerable"
behavior. And so most everyone in little Robertito's
world had played judge and executioner.
They defined certain behavior as
good and other behavior as bad. Using those distinctions
as commandments, they then took that as license to
forcibly extinguish the so-called "bad"
or inappropriate behaviors ... as if Robertito was
not, in fact, at two and three and four years old,
doing the very best he could based on his abilities
and limitations. To treat a dysfunctioning child,
who already displays dramatic difficulties in relating
to our world, in such an abusive and hostile fashion
raises serious questions. But the issue is side-stepped
by the professional, who does not examine his own
methods in the face of "no progress," but
simply dismisses the child as uneducable or incurable.
At no time did we intend to manipulate
Robertito physically, either to stop or to encourage
any movement or response. The attitude of "to
love is to be happy with" created the foundation
from which we approached him. We had no conditions
to which he must conform, no expectations which he
had to fulfill. Most important, we would make no judgments
about good and bad, appropriate or inappropriate.
In effect, like all of us, this strange little boy
did the best he could.
Respecting his dignity and his world
as we had respected Raun's, we decided if he, too,
could not join us, we would join him ... build a bridge
through the silence, if possible, and motivate him
to want to be here, to want to participate. Thus,
we would, within the limitations of one week, try
to create the same kind of easy, beautiful, responsive
and loving environment as we had once done for our
own son.
In joining him, we did what he did.
When he flapped his arms, we flapped our arms. When
he made the clicking sound with his tongue, we made
the same clicking sound with our tongues. He toe-walked;
we toe-walked. He granted; we grunted. With the exception
of defecating in our pants, an activity he still maintained,
we followed him, taking our cues as he presented them.
We were really there, moving in earnest, participating
as caring friends, trying to say, "Hey, Robertito,
we're right here; we're with you and we love you,"
The session continued to the point of exhaustion.
Eight hours later, a little after six o'clock, Suzi,
Robertito and I emerged from the bathroom, The Sotos
had already returned. They looked at us expectantly.
"Wait," I smiled, anticipating
their questions. "We all had a very beautiful
day together ... in the bathroom. After observing
for several hours, Suzi and I joined Robertito. We
did everything that he did with a loving and accepting
attitude."
Francisca took her son's hand and
led him to the couch. "Sienta-te. Sienta-te,"
she said firmly, yet affectionately. Then, turning
to us, she asked, "Did he respond? And did he
know you were there?"
"I know how much you want things
for Robertito. We do, too," Suzi said. "At
no time did he respond in a way we could understand.
So we don't know if he was even aware of our presence."
Suzi tapped her chest. "Somehow, deep inside,
I know it counts. We have to trust that and allow
what happens."
Francisca nodded her head, trying
to camouflage her disappointment.
Roby began to speak rapidly and Jaime
waved his hands to slow the burst of words. "We
have met your lovely children. Bryn and Thea are quite
beautiful and loving. Raun, well ...Raun is unbelievable.
I never thought he would be ... be so, so normal.
He introduced himself, sat on my lap, and asked to
see Robertito. When I said you were with him in the
bathroom, he shook his head like an old man and asked
if Robertito was autistic."
Tears filled Suzi's eyes. "Wait,"
she said, "I want to get the kids. I know how
much they wanted to meet Robertito." She called
to them at the staircase. Little feet rumbled across
the ceiling toward the stairs.
Bryn appeared, first. "Oh, Robertito,"
she exclaimed, "you're so cute." Thea and
Raun followed. The children gathered around their
strange new friend. They smiled and chatted with great
excitement.
"Look at his fat cheeks,"
Raun shouted. "I just love them." Any child
in the universe with chubby cheeks is automatically
adopted by Raun as a special friend. Some children
are excited by ice cream, others by toys-our son manages
to be quite different most of the time. After a couple
of minutes, Raun, visibly confused, turned to his
mother. "Mama, why doesn't he talk to me? He
never answers. When I tried to take his hand, he pulled
away."
"Remember our talk, Raun,"
Suzi replied. "Robertito doesn't speak. Maybe
one day he will, but right now he can't. He also doesn't
like to be touched, but don't think it means he doesn't
like you."
"Joanna and Brian didn't talk
either," Raun declared, pondering his association.
"Robertito's autistic like them!"
"Yes," I said. In a hushed
voice, Jaime translated our conversation into Spanish.
Thea stood beside little Robertito
and laughed warmly as she flapped her hands the way
he did. It was her way of saying hello. For a moment,
just a fraction of a second, he paused. It seemed
as if, in that instant, Robertito actually looked
directly at Thea.
As previously arranged, our visitors
left for dinner and returned at eight o'clock. Raun
had been put to bed. Sasha, with Bryn and Thea's help,
guided Robertito into the den. The girls wanted to
work with him; to join him in his world as they once
did with their own brother.
As I stoked the fire, Suzi offered
them organic grape juice, turned and mellowed like
a fine wine.
"Are you still with us, Jaime,"
I said jokingly to the maestro.
"Yes, definitely, Senor Kaufman."
This warm and unpretentious man seldom smiled.
I leaned forward, peered directly
into Francisca's eyes, and asked, "How would
you feel if Robertito never changed, if he could never
do anything more than you see here today?" Jaime's
eyes jumped back and forth, registering surprise at
my question. Then, mimicking my tone, he translated
it. Roby sighed. Francisca's face flushed; her eyes
narrowed. An expression of great sadness and pain
overwhelmed her face. Anger curled her lips. She fought
her instinct to cry or scream or shout.
Again as gently as possible, I asked
the same question. Jaime hesitated, then repeated
it. This time, Francisca gave in to the feeling and
sobbed heavily. Roby held his wife, barely containing
himself.
When she regained her composure,
she faced me and said: "It would be awful, terrible.
Don't you think so?" And so began our first Option
dialogue.
"Well," I said, "what
I think is not as important as what you think. It's
your son, it's your pain. What is it about being this
way that is so awful, so terrible?"
"He can't do anything for himself."
"What do you mean?"
"He does not feed himself. He
cannot dress himself. He is not toilet trained. He
does not talk. I could go on and on."
"All right, what is it about
all those things which he can't do that gets you so
upset?"
"I want more for him,"
she said, crying again.
"I understand that, but wanting
more for someone we love is different than being unhappy
about not having more. What is it about all those
things he can't do that upsets you so much?"
"Most children his age do many
things. Although he's four, he's like an infant. People
stare at Robertito, make fun of him. I can't stand
it."
"Why?"
"He's not a freak. I don't want
him treated that way."
"What do you mean?" I asked.
"The whispering. The pointed
fingers. The laughter."
"What about that makes you unhappy?"
She glanced at Roby, who remained
silent but obviously involved. "I ... I..."
she stuttered, "I'm afraid it will always be
that way."
"Why do you believe that?"
"Because I don't see any changes,"
she answered. "Because he gets older and older
without learning new things."
"Since your fear is about the
future, why do you believe if, up till now, he has
learned very little or even nothing, that it means
it will always be that way?"
Francisca looked at me, confused.
"I don't know," she said. "I guess
it doesn't have to mean it'll always be that way."
She paused to rub her eyes. "Okay," she
continued, grinning self-consciously, "but I'm
still unhappy about the way Robertito is."
"What are you afraid would happen
if you weren't unhappy about his condition?"
"Then, maybe, I wouldn't do
anything about it."
"Are you saying by being unhappy,
you stay in touch with wanting to change the situation?"
"Yes," she said.
Roby's face lit up, but as he raised
his head to speak, I held my finger to my lips.
Directing myself back to his wife,
I said: "Why do you believe you have to be unhappy
in order to pursue what you want?"
"I don't," she answered,
quite clear on that point. "But I guess I act
like I do." She shook her head, "This is
all very new for me."
"What is?" I asked.
"Well, if my son is sick and
I am not unhappy, then maybe it would mean I did not
care about him," she concluded.
"Okay," Suzi interjected.
"Let me give you back your statement as a question.
If your son is sick and you do not get unhappy, would
that mean you don't care?"
"I don't know. I'm not sure
any more," Francisca mumbled.
"What would you guess?"
Suzi continued.
"The more I think about it,
the sillier it is. Why do you have to be miserable
when someone you love is sick? Sometimes you are so
busy helping them, there is no time to feel sad ...
and yet, you still care. I know, I had that situation
once with my mother when she was very sick."
Francisca smiled fully for the first time since her
arrival. She kept shaking her head up and down.
I apologized to Roby for my curious
finger, but thanked him for holding his comment.
He had understood. "Bears,"
he said, "I want you to know that each time you
asked a question, I tried to answer it for myself.
Each time, I found my own thoughts in Francisca's
answers. Often I have worried about whether this will
go on forever. Now, I feel different."
We continued the dialogues until
three in the morning. Roby further explored his fears
about the future, his concerns about who would care
for Robertito when he died. He uncovered the belief
that if he wasn't afraid of these possibilities, he
might not do as much as he could. When I asked him
why he believed that, he answered that he didn't know.
So I asked him what he was afraid would happen if
he no longer believed it. Immediately, he laughed.
His answer was the same as before; the fear he might
not do all he could. At that moment, as he came to
understand how he frightened himself into moving,
the belief and the fear disappeared. No, he assured
himself, he did not have to scare himself to make
sure he covered every base. In fact, he became aware
that the fear of the future had actually diverted
him from fully attending to all that he could in the
"now."
I quoted to him the words of a wall
poster in a friend's office. It read: "I'm an
old man now. I've worried about many things in my
life, most of which never happened."
Francisca reviewed her thoughts and
feelings about being responsible for Robertito's condition.
When she could not give one concrete example illustrating
how she might have caused his problem, she blamed
it on heredity. Why did she believe that? She didn't
know. What was she afraid would happen if she no longer
believed it? Her answer surprised both her and her
husband. If she no longer believed it, then she would
have another child. And how would she feel about that?
Badly. Why? Because she did not want to stop trying
to help Robertito. Why did another child mean that?
It didn't ... necessarily. And so, piece by piece,
she unraveled some of her fears.
At ten minutes to three, Roby suggested
they leave. He carried his son to the car as I followed
with his briefcase. Francisca, Suzi and Jaime joined
us on the sidewalk.
"It has been a most enlightening
evening," Jaime said, shaking my hand.
"Perhaps, later in the week,
I will ask you some questions," I said. The others
laughed as the maestro smiled awkwardly.
Roby grabbed both Suzi's hand and
my hand. His arms trembled as he said: "Gracias.
Muchas gracias." Without warning, Suzi kissed
him on the cheek. Obviously very touched, he turned
quickly to hide his emotions and slid into the driver's
seat. Suzi then hugged and kissed Francisca. Jaime
stepped back, anticipating her next move. Seeing his
discomfort, she threw him a kiss.
"Nine in the morning,"
I shouted as the car left the curb. Time was so short,
so limited. We wanted to cram as much into this week
as possible.
Suzi looked at me with a knowing
smirk, then she consulted my wristwatch. "I know
exactly what kind of crazy week this is going to be.
Okay, superman, if you can do it, I can too."
Chapter
1 Continued »» |
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