Chapter 14
Despite the imperfections of this
turn-of-the-century brownstone on the fashionable
upper East side of Manhattan, the walls of this ancient
relic remained reasonably upright. And, yet, the interior
hung over me like the inside sloping bulkhead of a
racing sloop. The high ceilings and huge archways
fell victim to the dark maroon paint which appeared
black during this last hour of daylight. As I waited,
quiet and alone, my eyes rested on the rather bizarre,
provocative painting of an attractive young man displaying
his lean crop of chest hairs through an opened, black
leather jacket. Two art-deco rams, sculpted in the
early thirties, guarded the fireplace. Lavish floral
prints covered the peculiar low-back chairs and odd-shaped
divan, all art deco, all salvaged from the early part
of the century; old enough to qualify as valued antiques,
yet too spiffy, too born-again to suggest another
time.
Every aspect of Jane's brownstone
as well as her business, a literary agency, reflected
her careful preplanning and her preoccupation with
detail. An incisive young woman. Clear. A workaholic.
Only recently had she departed from her single focus,
allowing Carol, a young actor, and Herman, an ever-present
basset hound, to share portions of her life.
When I met Jane, she occupied a seedy,
cluttered version of her present surroundings. Her
former apartment could have been rented as a grade
B movie set in an old Boris Karloff film. At that
time, she draped her body in basic black. Her decisive
hand movements, direct eye contact and commanding
voice completely overwhelmed any awareness of her
femininity.
The drone of Jane's voice filtered
into the room. I listened with obvious enjoyment as
she soothed one of her other authors skillfully. More
than my agent, she had become my friend.
"Hi, Baa," Jane sang as
she entered the room theatrically. She wore a light
tan dress without a bra. The curve of her hips was
apparent, in contrast to her former attire.
"You always startle me when
you dress like that," I said. "Somehow,
I think of you more like a lean bulldozer than a person
with particular sexual attributes."
She stopped short in the middle of
the room and grinned cautiously. "From you, I'm
sure it's a compliment." Jane extended her chin
and pushed her cheek into my face. I kissed her lightly.
"Only two other people I know
express their affection like that," I commented.
"The Queen of England and my aunt Gloria... and
my aunt Gloria is dead."
"How nice," Jane chimed.
She tossed a package into my lap. "These are
the galleys from Giant Steps."
As I opened the package, Herman romped
into the room, barking as he jumped on my legs. "Herman,
get down," Jane counseled. "C'mon, Herm,
down, boy, down." She laughed. "Hey, Baa,
you see what happened. The first Option dog. I tell
him one thing and he decided to trust himself instead.
I always ask him why he's unhappy. We have to let
him work it out ... of course." She glanced at
her barking, jumping dog. "Okay! Down, Herm,
down." Inevitably, the hound became part of the
meeting.
"I'll work through the galleys
during the next couple of weeks. We're pretty jammed."
"You know," Jane said,
getting right to the point, "I still don't quite
think you made the best move. Now is the perfect time
to write another book. An interruption in your career
is not good, not good at all. Besides, if you keep
doing things like Robertito, you'll end up on welfare.
I don't think that suits your style."
"We're afloat," I said,
smiling.
"Hey, Suzi told me about the
grant, I'm sorry it didn't come through. I hope it
doesn't bring this project to a premature end."
I sighed, then smiled. "One
day at a time."
"Uh-huh," she grimaced,
avoiding direct expression of sentiment. "Okay,
tell me what's happening with him."
"Who's him?" I asked.
"The interruption, of course.
The little boy who pulled you away from the typewriter
and everything else you were doing."
After my lengthy description of the
incidents and movements involving Robertito and those
who worked with him, Jane pointed her finger at me.
"Could you send me a page or two on it? I want
to have it. Okay?" I nodded. Jane dipped her
head, anticipating my response to her next comment.
"If you could only guarantee me the kid will
make it, we might have something big here."
"Hey, Jane, the point is not
the outcome, but the evolution ... for all of us,"
I paused. "I know it sounds soupy, but it's not."
She stood up and paced the room.
"I know you know what you're doing with this
boy, but do you think you're taking care of yourself
and your family?"
"I think so," I said, aware
of the tentative, quality of my answer.
"Do I detect a note of doubt
in there?" she probed.
"You sound like my kids."
"That's your fault. You have
everyone asking questions now," Jane replied.
"Yeah." I nodded. "Did
you ever consider doing what felt good to do and trust
that everything else will take care of itself?"
"Not on your terms," she
replied. "A great aunt of mine, twice removed,
used to say, 'Where God guides, God provides.' Well...
it's either that or bankruptcy."
"That sounds rather extreme,"
I countered.
"Perhaps ... but did you ever
consider that what you're doing is rather extreme?"
she replied.
"It's not," I insisted.
Even if it was, we'd already made the choice.
"Listen, I have an investment
in you to protect," Jane said straight-faced,
then softened her expression. "I guess I'd like
it to work out."
"So would I," I said.
*****
Roby played patty-cake with his son.
Since Raun's extended visual encounter with Robertito,
our little friend increased his sustained eye contact.
He looked at his father directly for ten seconds at
a time. On three occasions, he stared into his face
for almost half a minute. His co-operation had noticeably
improved, Robertito even grabbed the ball spontaneously
and threw it on the floor.
"Oh, you want to have a catch
with Papa," Roby said, scrambling for the sponge
sphere. "Okay, my son, you sit here. Sit here."
He guided the little boy gently to a spot near the
center of the room. Robertito squatted on the floor,
then watched his father from the corner of his eye.
Roby raised his arm. In response to the gesture, the
little boy faced his father directly. The ball became
airborne. Robertito's feeble attempt to catch the
ball met with surprising success as it fell, literally,
into his hands. Roby cheered and hugged his son. The
child returned the ball awkwardly. Between each throw,
Robertito grabbed for food, but his father held it
above his reach.
"If you want food, say 'co,'"
Roby told his son repeatedly.
Carol entered the room to observe.
She had been at the Soto house from morning until
night since that first day. She wanted to use every
minute of her long weekend before classes reconvened
on Monday. Her session observing Laura had infused
her with impatience to begin herself, yet, somehow,
she did not feel ready. As she watched Roby work with
his son, she felt awed by his tenderness. Carol viewed
him as strong, incredibly strong, but not in the predictable
ways. Robertito suddenly noticed her. He walked in
front of her and stood absolutely motionless as he
side-glanced at her. Carol raised her hand very slowly
and touched him. He remained inert. Carol caressed
the side of his arm. Robertito crumbled to the floor
immediately and slid his hands under her shoes. Roby
nodded to Carol. Flattered by the little boy's approach,
she rose and rocked back and forth on his hands. He
stared at her shoes. Two minutes later, he pulled
away and ran in a circle around the room. His father
followed.
"I'm going to get you,"
Roby shouted. The little boy side-glanced, a smile
enveloping his face. "I'm going to get you,"
his father shouted again. Robertito tried to move
even faster. Finally, like a lover rather than a football
player, Roby tackled his son and tickled him gently.
Little boy laughter filled the room. Carol shook her
head. In the short four days she had been watching,
she catalogued changes in the child. Each step this
little boy made weakened the foreboding words of her
neurologist about autism and, equally as important,
weakened his words about her. But he's the expert,
she thought, suddenly distrusting her own thoughts,
her own dreams.
When Roby introduced a puzzle, Robertito
quickly withdrew all nine separate pieces. "Good,
papito," Roby whispered, his grin overwhelming
his face as he replaced the first piece. The boy watched.
"You do it. Go ahead. Put the puzzle piece here.
Here." He handed him the cow form. Robertito
fumbled with it, flapped it, then put it on the puzzle
board. "Find the place. Go ahead, find the place."
Giving his son a hint with his finger, he coaxed the
little boy into action. Within seconds, Robertito
had replaced the form. To celebrate, Roby gave his
son food. When he went back to the puzzle, Robertito
remained focused on the cup. He stretched his lips
in several peculiar directions. Then, a very strange
unintelligible sound thumped from Robertito's throat
as he stared at the food.
"Do you want food?" Roby
asked. "Just say 'co."' No response. They
worked with the other puzzle forms. Then, Robertito
made the same peculiar circle shape with his lips.
Another crude sound bellowed from his larynx . He
repeated the grunt a third time. Finally, in a loud
voice, Robertito Soto said "co".
"Oh my God," Carol gasped
as Roby whipped out a spoonful of tuna and delivered
it to his son. He kept feeding the little boy as he
wiped the tears from his face. Carol thought of her
father and his comment about the beauty of a man crying.
Robertito made the "co"
sound again. His face seemed as placid and inscrutable
as ever, even while he crossed over; from him to us,
from the right side of his brain to his left, from
being mute to the very first step in verbal communication.
Carol ran from the room to fetch
Francisca. When the two women returned, Roby and his
son had begun the long process of stringing beads.
In an effort to have him murmur "co," Roby
showed his son the tuna many times. The little boy
babbled, whined and hummed, but he didn't repeat his
accomplishment. After an additional two hours passed,
Francisca squeezed Carol's arm and rose to her feet.
At the moment the door touched its frame, a noise
filled the room, Robertito said the word "co"
again more clearly than ever before. Francisca screamed.
She grabbed her bewildered son and hugged him ferociously.
She screeched upon embracing her husband and Carol.
Francisca knew her son had just moved through what
she feared had been an impenetrable barrier.
*****
The wind blew her hair to the side
as she walked beside me. We strolled along the path
next to the duck pond. Carol smiled, locked her face
sternly, then smiled again. "After what happened
yesterday, all my stuff seems unimportant."
"What do you mean?" I asked.
"Yesterday, we talked about
my problem at home, living with my mother. Seems so
trivial compared to an almost six-year-old boy saying
his first word."
"But it's not. You mentioned
this morning how everyone is so loving and so attentive
to his every cue. I guess that's because they're reasonably
clear when they're with him ... and that's because
they first work on becoming clear with themselves."
She held her hand up like a traffic
cop, then touched her chest. "I guess it begins
here. You said that the first day we talked about
the Sotos." She paused and rubbed the bump on
her nose. "Laura told me she was a wreck for
the first couple of weeks. It's hard to believe when
I watch her now." Her eyes shifted to the leaves
above us. "They're so pretty." She laughed.
"I'm looking for my subject. There's so many
things to talk about."
"Just pick one," I suggested.
A group of sea gulls hovered above us in their quest
for food. One dove in front of me, hawked a strange
cry and flew away.
After a short monologue revealing
her intense feelings about Robertito, Carol talked
more about wanting her mother to accept her as Suzi
and I had. But as she explored, she realized her own
intolerance.
"Remember when we talked about
a nurturing environment for Robertito ... well, this
might sound silly, but maybe I could do that for my
mother. I guess I've been pushy and who wants to open
up to someone like that," Carol said. "I've
always wanted her to take the first step, but maybe
I could, maybe."
We sat down on a grassy slope together.
Carol lay back and searched the tops of the trees
with her blue eyes. She wanted to tell me about the
connection she made between Robertito's autism and
her epilepsy; but she censored herself. She winced,
then flexed her jaw to divert her attention.
"How do you feel right now?"
I asked, responding to the discomfort surfacing on
her face.
"Not too good," she answered.
"Remember I told you I have epilepsy."
"Yes," I replied.
"Well, I am anything but comfortable
about it," she said.
"What about it disturbs you?"
I asked.
"I've had the seizures since
I was fourteen, but I wasn't diagnosed until later.
I went through the whole scene with the neurologist,
the EEG and all the other tests. They put me on Dilantin,
which is supposed to control it ... but it doesn't.
When I told the doctor I didn't feel well with the
drug, he told me to keep taking it. I ended up in
the hospital because the amount the doctor had prescribed
for me was an overdose. Even now with a lower dosage,
I still get blurred vision sometimes or my balance
goes off from the side effects. My speech gets slurred
once in a while. I know I'm going on and on, but it's
not simple to answer what specifically disturbs me.
The seizures scare me and so does the medication."
"Why do the seizures scare you?"
"I feel out of control. I'm
afraid I'm going to get hurt. I get this aura and
then it starts."
"What starts?"
"The seizure. I feel these weird
sensations: heat, a deja vu-type feeling, a tingling
all over my body. It begins in my stomach, right here,
down low, and then it spreads out. When I passed out
in school, I banged my head against one of the desks."
She paused uncomfortably. "It's kind of like
being a freak."
"What do you mean?"
"Once it begins, I can't do
anything about it. I get so scared."
"Scared about what, Carol?"
"That I won't come through it."
"What do you mean?"
"I don't know." Her eyelids
fluttered nervously. Despite the cool breeze in the
park, a line of perspiration dotted her hairline.
"I don't know why I said that. I don't think
I'm going to die. It's that terrible feeling that
I can't do anything about them ... out of control."
"Why is having a seizure being
out of control?"
"Isn't it?"
"What do you think?" I
asked.
"That's the wildest question.
I've never thought about it before." She paused
and exhales forcefully. "I remember in a health
ed. course, there was a whole discussion on the common
cold, how the body and the nose runs as a way of expelling
mucus and germs. Like somehow, a runny nose was a
good sign, not a bad sign. The body was healing itself.
You think that could be with my seizures?" She
glanced at me and nodded. "I know. I'll answer
it." She sat up and watched the sea gulls. The
cadence of her speech slowed. "Maybe. That's
the best I can do ... a maybe. You know that's what
always bothered me about taking anti-convulsant drugs.
Why not find out the cause of the seizures and deal
with that instead of just trying to sedate it? It
makes more sense, but it's still scary."
"How?" I questioned.
"The doctors say I'll have to
take the drug the rest of my life. Even with it, I
still have seizures ... just not as many. I guess
what scares me is the feeling I get when I have one."
"What are the feelings you get
which frighten you?"
"This warm feeling in my stomach,
then all over my body,"
"Okay," I acknowledged.
"What is scary about a warm feeling?"
Carol stared at me dumbfounded, "I
don't know. As I think of it, the feeling doesn't
scare me - if I was in a warm bath, that would feel
good - it's what it means!"
"And what's that?"
"I'm back to my earlier answer
again. It means I'm out of control."
"Do you believe that?"
I asked.
"Till today, yes, definitely,
absolutely. Now ... I'm not sure. I've never tried
to control a seizure. I get so scared it never occurs
to me there might be something I could do. One thing
which is funny - the doctor asked me if I had a job
with pressure. I said no, but when I worked in the
bank, I was miserable." She smiled. "And
I had more seizures during that time than ever before.
Do you think there could be a connection?"
"What do you think? Carol, I'm
not avoiding answering you, but your response to your
question could be more productive for you than my
response. What do you think? Do you see a connection?
You'd know better than anybody else."
"Maybe. I'm pretty 'maybe' today.
I never took it apart before. It was the black area
that I wanted to avoid. It's hard to let go of the
fear. I've lived with it over ten years."
"Well, what are you afraid would
happen if you weren't afraid of the seizure?"
"It would get worse."
"Do you believe that?"
"Yes, yes ... until I just said
it." Her forehead furrowed. "The opposite
is actually true. The more frightened I am, the more
paralyzed I get. If I had relaxed that time in school,
I would have sat down instead of waiting until I fell
down. I never picked it apart before, Bears."
She placed her hands over her mouth
and shook her head. "I can't believe what I'm
saying." A sigh whistled through her throat.
"I feel... less, less locked up about it."
"Do you still feel frightened
about your seizures?"
"Not right now, but, well, what
happens when I get one?"
"What do you mean?" I asked.
"Maybe I'll forget this entire
dialogue and be scared all over again."
"Why would you do that?"
"I don't know. I wouldn't want
to; really, I wouldn't!" she asserted.
"Then if you don't want to forget
what you've come to understand, why do you believe
you would?"
She patted the top of the grass with
her palms. "I don't believe I would. I guess
I just scared myself again."
"Why?"
She grinned sheepishly. "So
I'd remember."
"Do you believe you have to
scare yourself in order to remember?"
"No, no..." She threw her
head back and gazed at the sky. "That's what
I usually do. And it never works anyway. I'll remember
and if, by chance, I don't..." She aborted her
sentence.
"And if you don't, how will
you feel?"
"Like a human being." Carol
held her hands together in front of her chin and tipped
her head. "A human being, not perfect, but trying."
*****
Laura hung her leg over the arm of
the couch as she leaned against Suzi's arm. Her patched
dungarees formed to the shape of her athletic legs.
The embroidered shirt hung lazily over her upper torso.
Carol squatted on the floor opposite my chair. Her
eyes squinted repeatedly, then stopped abruptly. Roby's
relaxed posture suggested a certain dignity as he
waited for the meeting to begin. Francisca, seated
on the floor beside her husband's chair, busied herself
with her pad and pencil, Amalia, already a regular
at our Wednesday night sessions, crossed her legs
as she angled her alert body forward. A touch of nervousness
fluttered at the corners of her lips.
Bending over her knees, Suzi removed
her sandals and placed her feet discreetly on the
coffee table. Her red, white and purple argyle socks
attracted everyone's attention.
"I lov'em," Laura gushed,
pinching Suzi's big toe.
Suzi withdrew her feet, curled them
underneath her legs and did an "I-am-embarrassed-little-girl
routine." A deep baritone cackle erupted from
her throat when she put her feet back on the table
and modeled the socks by twisting her ankles and toes.
"I like them. I like them,"
Francisca insisted supportively in Spanish. Amalia
laughed as she translated her comments.
Suzi waved at me, obviously enjoying
the attention from her sock fetish.
"Are we ready?" I asked.
Amalia translated my question.
"Si, Bears," Francisca
snapped immediately, her intense eyes and waiting
pencil poised for a fast beginning.
"I'm ready," Amalia volunteered,
shifting her weight further forward to balance on
the edge of the chair.
"Wait, wait ... before we begin,"
Francisca chimed. By the time Amalia translated the
short burst of words from Spanish to English, Francisca
had already bolted out of the room. Moments later,
she returned with a freshly heated organic banana
cake and Haagen-Dazs ice cream.
"Hurray for Francisca,"
Laura shouted. Carol and Suzi applauded. Roby smiled
broadly.
"What's the matter, Bears?"
Francisca asked.
I shrugged my shoulders and laughed.
"You turn every session into a minor eating orgy."
She smiled mischievously. "Hey, just look at
this," I said, pointing to my stomach.
"I love it, Bears," Suzi
assured me.
"Me too," Laura said.
"Hey, Bears," Roby said
softly, "Maybe if you eat enough, you will one
day look like Buddha." Everyone laughed at Roby's
rare display of humor.
Francisca suddenly looked dejected.
"I'm sorry," she whispered.
"No apologies necessary. You
have not done me a disservice," I explained.
"Only I can do that. When you notice me eating
this wonderful food in two minutes, just remember
I decided to eat it; you merely presented it to me."
Carol applauded quietly as she scrutinized
her own figure.
"While we do our little ice
cream orgy, let's begin with some general observations,"
I said, switching on the tape recorder. "I noticed
Robertito was distant today. Everyone seemed surprised
and a little off-centered with his increased 'isms'
and diminished eye contact. I think we're spoiled.
Perhaps, since he's moved so rapidly, we kind of expect
to see it continue day after day. And if so, then
we have implicit goals and a timetable irrelevant
to our little friend."
"He turned the key and used
the phone dial on the activity board on Monday,"
Laura said. "Yesterday ... zero. But I know he
can do it."
"We don't know that," I
replied. "A doorway that was opened yesterday
might be closed today. Sheer psychic exhaustion could
sedate his whole system. For example, he said 'co'
many times for three straight days. Then ... nothing.
Maybe some of us were disappointed." I paused.
"Rather than continuing to celebrate what he
did and can do, we mourned, just a little, what he
couldn't do." Francisca nodded her head in recognition
of her own sentiments.
"Can we still keep trying even
if he seems not to understand?" Carol asked.
"Sure," I answered. "But
first we go with him, then we can introduce whatever
we want in the moments between his 'isms' or activities.
We can never know when he'll make a connection, be
able to do something today that was impossible last
week. It's not only what we do, but what we have in
mind when we do it."
"When I worked with Robertito
using the cloth book with pockets," Suzi interjected.
"I watched him open the snap, the self-stick
pocket and the zipper. The next day he acted like
he'd never seen the book before. At first I kept saying,
not out loud, but in my mind 'C'mon, Robertito. Do
it! You did it yesterday. Do it again!' Then I heard
myself. When I backed off, I saw a difference. He
still couldn't do the pockets, but he made several
attempts. Somehow, we have to always remember to let
it come from him."
"Yeah," Laura echoed. Amalia
tipped her head in agreement as she translated Suzi's
words into Spanish.
"It's his motivation that we
want to stimulate," Suzi added.
I scooped some ice cream into my
mouth. Suzi stared right into my eyes and smirked.
Laura, noting her glance, pushed her over on the couch
and sat on her legs. Carol tickled Laura's foot, dethroning
her from Suzi's body.
"C'mon," Francisca said,
wanting to hear every word as soon as possible. During
our first meetings, she interpreted laughter and jostling
as an affront to the seriousness of the program and
her son's situation. She had held back her own joy
as a statement of caring. Only after working through
her beliefs about the reverence of grief and loving
could she allow her own smiles. She no longer thought
she must withhold happiness until Robertito progressed,
understanding she could, indeed, be happy now while
on the journey. Nevertheless, her efficient, thirsty
mind often clutched for rapid answers.
"Ready?" I asked. Suzi
shook her head in defiance. "Excuse me,"
I said, catapulting myself over the coffee table.
Amalia gasped as I grabbed Suzi, threw her over my
shoulder and carried her into the empty dining room.
"Bears, I'll be quiet. Bears.
Don't." Like a slowly starting machine, I began
to twirl in a circle. I could hear Roby laughing.
"Bears," Suzi called, "you always tell
Raun not to touch other people's bodies against their
will, that it's not his property. Well, this body
isn't your property, so please put it down."
Although the momentum of my turning
had increased appreciably, I stopped abruptly. "Good
point," I said matter-of-factly, and returned
her to the couch. Suzi kissed me before I returned
to my seat.
"To continue," I said,
looking around at this wonderful family. Suddenly,
I felt heat in my face. "I'm glad to be here."
Laura touched my hand and Suzi's hand. Carol's face
flushed. Roby hid his eyes with his hands. Francisca
snuggled against her husband's leg and smiled warmly
at Amalia. For several minutes, we sat together in
silence.
"I want to thank all of you
for letting me be a part of your big family,"
Carol said. Easy smiles greeted her comment.
During the next four hours of our
meeting, all of Robertito's other behaviors were itemized
and digested carefully. In addition to speaking one
word, his greatest advancement appeared to be within
the area of receptive language. He could point at
different people in the room on request with about
40 percent accuracy. He could pick a circle, square
and triangle out of a pile of blocks, although he
could not identify objects by color. Twice, responding
to our suggestions, he withdrew the horse form and
the cow form from the puzzle board. He appeared to
know that musica referred to the tape recorder.
"A very special thing happened
only two hours ago," Suzi began. "While
I danced with Robertito, I noticed his little fingers
scratching at his groin. I hurried him into the bathroom
like everyone has a hundred times before. I sat him
on the toilet ... again, like we've done before. But
guess what that cute guy did this time - he urinated
in the toilet."
"Far out," Laura shouted,
banging the table, as everyone else applauded.
*****
Suzi and I didn't enjoy having to
say "no" to people who called for help,
but there were no hours left in the day. Because of
their month-long campaign, we agreed to see the Gardners.
They arrived with their daughter, Joanna, at seven-thirty
on a Saturday evening.
Joanna, at four years old, displayed
all the autistic patterns. No eye contact. Refusal
of physical interaction. Appeared deaf and blind at
times. Mute. Twirled herself in circles and rolled
her head endlessly like an accomplished yogi. Jack
and Meryl Gardner watched their daughter sadly. This
pretty, blue-eyed, blond-haired little girl, their
first child, their only child, lived in a world they
found confusing and frightening. They had attempted
several programs, including recent sessions with a
pediatric psychiatrist ... all to no avail.
Within the first four hours of moving
with her, accepting her and loving her, Suzi and I
established fleeting eye contact. She even straightened
her crossed eyes when she glanced directly at us.
Her parents watched, amazed and aghast, at the first
genuine, spontaneous responses they saw emanating
from their daughter. Jack folded his arms in front
of his chest, breaking his pose only to tuck his shirt
more neatly into his pants. Meryl leaned against the
kitchen cabinet stiffly. She lit one cigarette after
another, brushing her ashes into the sink. When I
suggested she join us on the floor with her daughter,
she refused.
"Uh, you know, I'm, uh, not
trained," Meryl said.
"Training doesn't matter,"
I said, trying to reassure her. "Look how she's
starting to respond." I faced the little girl.
"Joanna, we're talking about you because we care
about you." Whether she could understand my words
or not, I wanted to communicate, on whatever level
possible, that we didn't hold her at a distance. I
touched her arm, then smiled up at her mother. "Meryl,
nobody can be as effective a teacher as you can for
your own daughter."
"Go ahead," Jack said,
displaying some discomfort.
"Do you think so?" she
asked. Her husband signaled his affirmation with an
emphatic frown. Mrs. Gardner took my place and rolled
her head, imitating her daughter, as she sat on the
floor beside her. Joanna flashed glances alternately
at Suzi and her. "Oh, God, Jack, she's lookin'
at me. Jack, did you see?"
Jack acknowledged his wife's comments,
obviously pleased and confused by what we did with
his daughter. Each time she uncrossed her eyes, he
pointed at her, but remained silent.
Bryn and Thea took charge of Joanna
for the remainder of the evening as Suzi and I spoke
to the Gardners.
"Ya see, you people know what
you're doing, I guess," Jack Gardner asserted.
"But ya see, I'm not very educated. I never finished
high school. All this stuff about autism is a bunch
of mumbo-jumbo to me. The kid's sick, I mean ... you
can see that. But we don't know how to get help for
her, you know. Mr. Kaufman..."
"Bears ... and Suzi," I
interrupted.
"Okay, Bears and Mrs. Kaufman,
Suzi ... um, we come to you 'cause we don't know what
to do any more."
"We've been everywhere,"
Meryl said, her voice quivering. "Absolutely
everywhere. My Joanna's not stupid, you know. She's
very bright. They all treat her like she's retarded
and all that, but nobody knows my Joanna. She knows
where everything is in the house, absolutely everything.
She walked before she was one. You can't be a dummy
and walk before you're one, right?"
"Sometimes," I said, "autistic
children learn to do many things, even talk, before
they begin to behave differently."
"Yeah," Meryl responded,
"that's what one of the doctors told us. But
she's bright, isn't she? Do you think she can learn?"
"Meryl," Suzi said softly,
"with anyone, whether it's a child or an adult,
there's always a possibility, always a real chance."
"But what I mean, ya think she'll
be normal?" Meryl asked directly.
"Jesus," Jack sighed, "they're
just folks, Meryl, not fortunetellers."
"Maybe I can answer you like
this," I replied. "When we worked with our
son and with others, we took one day at a time. The
past is gone and the future hasn't happened, so our
only concern is the now. That helps us focus on what
we can really do from this second to the next and
to the next."
Jack smiled. "That's kind of
how I get through my day at the grinding plant. One
rod at a time and before the egg hatches, the day's
over." He rubbed his hands together, wiping away
the imaginary grime.
"How do you feel about your
daughter?" Suzi asked.
They looked at each other for a second.
"Me, I'm kinda okay with it," Meryl answered.
"She's not like we expected and all, but I love
her. Ya know, I'm a very nervous person, but, with
me, my kid's okay, if you know what I mean. She's
my baby. Jack, well, he's got problems about it."
He massaged the area where the abdomen meets the rib
cage,
"It kinda began when she was
nine months old," Jack said in a thin voice,
"about the time she was, uh, called, you know,
sick. I got this knot in my stomach, right about here.
The doctors gave me all those chalk things to drink
and they took a bunch of pictures... uh, X-rays. Said
it was nerves. Well, I'll tell you I got angry. I've
never had a case of nerves in my life."
"Do you still have that knot
now?" I asked.
He acknowledged the pain in his gut,
a pain which had plagued him for the past three years.
For the next four hours, we concentrated on Jack in
a dialogue session. One of the stories he told us
in connection with his pain was about the psychiatrist
who, just last week, had counseled them about Joanna's
bath. The little girl loved the water but she splashed
it all over the walls and floor. Meryl viewed the
behavior as uncontrollable. The physician labeling
the child's antics as inappropriate, explained to
them that they must demand that Joanna act in accordance
with her age. The fact that this child dysfunctioned
to the extent that the world made little or no sense
to her seemed irrelevant. He instructed Jack to stand
behind his daughter and wrap his arms around her thereby
stopping her from playing and splashing in the tub.
Since he believed the doctor knew
infinitely more than himself, citing the man's education
and degrees, he never questioned the directions.
The following evening, Jack held
his daughters arms when she splashed. Joanna began
to scream louder and louder and louder. The knot in
his stomach tightened. His daughter continued to resist,
crying and choking at the same time. Jack felt like
he couldn't breathe as a wave of nausea overcame him.
He released the child and fled from the room. Why
did he feel so uncomfortable? Because what he did
felt wrong to him. He knew his daughter did not understand.
Restraining her when she merely wanted to play seemed
nonsensical and cruel.
After we had worked through some
of his fears and discomforts, Jack gave us his first
smile of the evening. He touched his stomach, astonished.
"It's gone," he exclaimed. "For the
first time in years, it's gone." He turned to
his wife. "Hey, Mer, it's gone!" She smiled
in a motherly fashion at her husband.
"Now that you feel more relaxed,
more comfortable, I want you to consider something,"
I said. "If you were to design a program now,
what would you do with your daughter?"
"But how can I, uh, what do
I know?" he answered.
"Why don't you try asking yourself
and see?" Suzi suggested.
He glanced at his wife, stuck his
chest out and began. "First off, I wouldn't hold
her in the tub any more. That's for sure. Ya know
what I'd do," he said with a sudden burst of
conviction. "I'd jump in with her and splash
the walls and floors myself." He smiled and slugged
his wife in the shoulder. "Ya hear, Mer, right
in the tub with her."
For the next forty minutes, Jack
Gardner, high school dropout, described in detail
a program which in vision and specific techniques
mirrored the one we had originally designed for our
son. In those moments of comfort and self-confidence,
he knew and understood more than any theory or text
could teach him.
Chapter
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