Authors: Arthur Fleischmann
Carly’s Voice (2 page)
Touchstone
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Copyright © 2012 by Arthur Fleischmann
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First Touchstone hardcover edition March 2012
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Library of Congress Cataloging-in-Publication Data
Fleischmann, Arthur.
Carly’s voice : breaking through autism/
Arthur Fleischmann with Carly Fleischmann.
p. cm.
“A Touchstone book.”
1. Fleischmann, Carly, 1995– 2. Fleischmann, Arthur. 3. Autistic children—Ontario—Toronto—Biography.
4. Parents of autistic children—Ontario—Toronto—Biography. 5. Autism in children—Treatment—Case
studies. 6. Autistic children—Education—Case studies. 7. Communication—Study and teaching—Case
studies. 8. Voice output communication aids—Case studies. 9. Toronto (Ont.)—Biography.
I. Fleischmann, Carly, 1995– II. Title.
RJ506.A9F587 2012
618.92’858820092—dc23
[B]
2011032733
ISBN 978-1-4391-9414-0 (print)
ISBN 978-1-4391-9416-4 (eBook)
For those who have not yet found their inner voice and those who will help them do
so.
Chapter 1: In the Eye of the Storm
Chapter 2: Red Lentils and Chemo
Chapter 3: Climbing the Well-Greased Ladder
Chapter 9: Breaking the Silence
Chapter 10: From a Whisper to a Shout
Chapter 11: A Shaken Can of Coke
Chapter 14: A Roar Is Not Just a Roar
Chapter 15: Daughter of the Commandment
Chapter 16: That Is How We Learn
Chapter 17: Pilgrimage to the City of Angels
Chapter 21: Staring Evil in the Face
Chapter 22: Good Enough, Isn’t
Chapter 23: What She Always Wanted
A Conversation with Carly: The Truths and Myths About Autism
Although the world is full of suffering, it is full also of the overcoming of it.
—Helen Keller
It was the end of the day. Two of my business partners were slumped in the stylishly
uncomfortable club chairs across from my desk. I was leaning back with my feet up.
“That was an awful meeting,” I observed.
“We were terrible,” said one partner.
“We talked way too much. Blah, blah, blah,” said the other.
“At one point,” I said, “I thought, ‘Oh my God, who’s talking so much? I’m so bored.’
Then I realized it was
me
.”
We laughed. The three of us had just wrapped up a business meeting with a prospective
client, one we didn’t really want. As a fledgling ad agency, however, we only ate
what we killed in those early days, and we shot at most anything that moved.
“There will be plenty of other opportunities,” I concluded with a shrug as I stood
to signal that it was day over, time to go home.
I left the office, a place of hipness and friendly banter—which
my assistant had dubbed “the epicenter of love”—and climbed into my car.
As I headed home to our comfortable house in a central Toronto neighborhood, I was
probably listening to The Fray or Creed blasting on the stereo and singing. With the
windows and sunroof open, I could enjoy the warm evening air. As I cut through the
Annex, then up University Avenue through Yorkville, I wondered how I could view Toronto
as such a beautiful, livable city and my wife could view it as so
not
. Then again, she grew up in Toronto and saw it through a different lens. As someone
who grew up in a suburb but always preferred the city, I appreciated Toronto’s cosmopolitan
charm.
The sun had started sinking, casting a golden light. The summer colors were fading,
coming to the end of their all-too-short season. But the dying maple leaves found
one more blast of energy and painted a palette of gold and red on the trees lining
the streets.
I arrived home and parked my car in the driveway that extended to the back of the
house, noting that my wife, Tammy, was out. This was not unusual on a weekday evening.
Typically, one of the kids had an activity, or Tammy had an appointment or an errand
to run. Before entering the house, I stopped to survey our little dollop of tranquility
outside our back door: a cedar fence that surrounded the small, vibrant garden; a
limestone patio; and a lawn that had kept its vigor well, considering the lateness
of the season. I paused on the back porch for a moment, listening to the babble of
the waterfall I installed that summer, and steeled myself with a deep exhale.
The back door into the kitchen was unlocked. This
was
unusual, but not alarming. We lived in a tidy and well-groomed neighborhood of old
brick homes, with well-groomed neighbors that kept to themselves. The kitchen, which
we had recently renovated, was orderly and calm. Our nanny had already fed the kids
and cleaned up dinner.
“Hey,” I called into the den to my preteen son playing on his
Xbox. He grunted a response. I dropped my satchel and called up the stairs “Helloooo,”
with just enough sarcasm to elicit a “Hi” from one of my twin seven-year-old daughters,
Taryn.
“Where’s Carly?” I yelled to our nanny over the sound of the bath filling. I asked
this question instinctively and nearly as frequently as I inhaled.
“Isn’t she in her room?” she replied from the washroom. “Oh shit,” I said.
I ran from bedroom to bedroom. Down the stairs, through the living room, dining room,
and den, and into the basement in what can only be described as one continuous swoop
through the house. But I knew I wouldn’t find her here. The house was too quiet. It
lacked her frenetic energy that usually electrified every room. For a brief moment
the four of us—our nanny, my son, my daughter, and I—faced each other at the landing.
Carly was gone.
We stood staring at one another. If she’s not here, then where is she? “Who saw her
last?” I asked. I was not assessing blame, but merely fumbling my way through detective
work.
“She was sitting on her bed while I filled the bath,” replied our nanny. She had a
slow calm about her that could test my patience. But she had always been so dedicated
to Carly and to our family, so tolerant of the challenging tasks of helping to raise
a little girl with severe autism. In this role, many personality quirks could be overlooked.
As I dashed back down to the kitchen, the evening light was fading rapidly through
the bay window behind the kitchen table. Although we lived in a large, active city,
Carly’s life was tightly prescribed. There were only a few places we took her on foot
in our neighborhood. Almost instinctively, I bolted through the back door and down
the street. There was a small park several blocks away. We had been going there on
warm nights after dinner ever since we moved to the neighborhood, when the girls were
one year old.
Before they could walk the distance, we would push them in their twin stroller, drawing
the attention of passersby. Though I rolled my eyes at women cooing at my two sweet-faced
twins in their adorable outfits, I secretly enjoyed the attention.
Swinging on park swings was one of Carly’s favorite pastimes; she seemed to find the
whooshing of air in her face relaxing. And having her contained by a child swing was
a relief after a long day of work.
I was horrified at the thought that I might find her there. She would have had to
cross several busy city blocks in the twilight. I was equally horrified by the possibility
that I might
not
find her there. This was both my plan A and plan B. We lived only several streets
over from a large main avenue lined with stores and restaurants. Toronto is a grid
of streets, each one spawning another. If she wasn’t at the park, there was no telling
where she might be.
I ran the four or five blocks, oblivious to traffic. I was winded with anxiety. My
little girl was seven. She should know better than to leave the house without an adult.
She should be afraid of being alone in the dark or out among strangers. But Carly
did not know these things. It seemed to us that there were a great many things she
should have known but didn’t.
As I rounded the corner, I saw a woman standing by her bicycle, transfixed by a strange
sight. A little girl, my little girl, stood near the swing set. She was naked except
for her sport sandals. The dress she had been wearing sat in a ball on the ground.
Carly stood rigid-limbed, making short jerking, bowing movements from the waist like
a short-circuiting robot.
“Oh, thank God,” I heard myself breathe. But I did not feel the relief of a parent
being reunited with a kid who had wandered off to see a shiny toy at the mall. I knew
that I could not merely scold Carly and hope she would learn a lesson. Carly seemed
to have no fear and no conscience. My wife and I couldn’t take a breath without
knowing exactly where she was. One lapse in scrutiny and here we were—Carly, in the
park, naked, at dusk, alone. I felt happy to have found her, but I also felt the crush
of frustration and desperation, knowing that this would not be a onetime near-catastrophe.
It was just a moment in our lives. And we would have many more.
As I ran toward Carly, the woman asked, “Are you her father? Thank goodness!” She
sounded the way I should have felt. “I didn’t know what to do,” she exclaimed, now
sounding almost guilty. But this should not be her guilt.
I already had my standard-issue explanation, so well-rehearsed it’s a verbal tic.
“Carly has autism.” Three short words must suffice to explain a tome of weird behaviors
and limitations. It’s shorthand for Carly-is-different-she-acts-in-odd-ways-she-loves-taking-off-her-clothes-especially-if-what-she-is-wearing-has-a-spot-of-water-on-it-she-likes-repetitive-motion-like-that-of-the-swing-she-doesn’t-speak.
We didn’t know what Carly knew and what she was incapable of knowing. She made odd
movements and sounds and covered her ears when it was noisy. She cried often. And
she never, ever stopped moving. Never.
In one motion I picked up Carly’s dress and pulled it over her head. With little hope
it would have any impact on future flights, I told Carly, “You can’t just leave the
house, Carly. You scared me. And you must keep your clothes on when you’re outside.”
I wanted to say, “Stop this. Stop scaring the shit out of me. Stop creating havoc
every five minutes. Stop being so needy. I love you, but stop.”
But I didn’t. Instead, I thanked the woman for staying with my daughter. She repeated
that she didn’t know what to do or whom to call. I could see she was happy to escape
this situation. She was not unsympathetic, but I could see gratitude in her eyes that
this was not her life; that she could extract herself from this pathetic situation
and ride home to her family. She’d have a hell of story to tell her kids that night.
