Carly’s Voice
Page 1
I am an autistic girl but autism doesn’t define who I am or how I’m going to live my life. I have encountered many hardships in my life but slowly and surely I have been overcoming a lot of obstacles in my path. There are many days when I think it might be easier to give up than fight. However if I give up, if I don’t try, then who am I really?
ADVANCE PRAISE FOR CARLY’S VOICE
“In this unsparing but affecting account . . . it’s clear that while most people take the ability to communicate for granted, for Fleischmann it defines her daily struggles and miraculous successes. . . . [An] inspiring story.”
—Publishers Weekly
“To read along as [Carly] expresses her feelings in conversations with her father is almost as stunning as when she writes of life inside her autistic head. . . . Both heart-wrenching and deeply inspiring.”
—Kirkus Reviews
“I have learned more from Carly about autism than any doctor or ‘expert,’ and she has helped me understand and connect with my son in ways I couldn’t have imagined. Her book takes the autism conversation to new places and disproves the ridiculous notion that nonverbal people with autism don’t have feelings and thoughts or are unintelligent. Carly is—for me—autism’s fiercest and most valuable advocate.”
—Holly Robinson Peete,
actress, author, and autism advocate
Carly’s Voice is the wishful slogan of a movement. Autism has spoken, and a new day has dawned. Carly’s story is a triumph.”
—Richard M. Cohen,
author of Strong at the Broken Places and Blindsided
At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly remained largely unreachable. Then, at the age of ten, she had a breakthrough.
While working with her devoted therapists Howie and Barb, Carly reached over to their laptop and typed in “HELP TEETH HURT,” much to everyone’s astonishment.
This was the beginning of Carly’s journey toward self-realization. Although Carly still struggles with all the symptoms of autism, which she describes with uncanny accuracy and detail, she now has regular, witty, and profound conversations on the computer with her family, her therapists, and the many thousands of people who follow her via her blog, Facebook, and Twitter.
In Carly’s Voice, her father, Arthur Fleischmann, blends Carly’s own words with his story of getting to know his remarkable daughter. One of the first books to explore firsthand the challenges of living with autism, it brings readers inside a once-secret world and in the company of an inspiring young woman who has found her voice and her mission.
ARTHUR FLEISCHMANN lives with his wife, Tammy Starr, and their three children, Matthew, Taryn, and Carly, in Toronto, Canada, where he is partner and president of john st. advertising. Born in New York, he grew up in the Boston area and attended Brandeis University, where he graduated with a B.A. in English literature and economics. He later earned an M.B.A. from the Kellogg Graduate School of Management at Northwestern University.
CARLY FLEISCHMANN lives in Toronto, Canada, and attends a mainstream high school where she is enrolled in gifted classes. She corresponds with her thousands of friends and followers via Twitter and Facebook.
www.carlysvoice.com
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Copyright © 2012 by Arthur Fleischmann
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1 3 5 7 9 10 8 6 4 2
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.
Contents
Part I: Chaos Is Born
Chapter 1: In the Eye of the Storm
Chapter 2: Red Lentils and Chemo
Chapter 3: Climbing the Well-Greased Ladder
Chapter 4: Sleeplessness
Chapter 5: Away from Home
Chapter 6: It Takes a Village
Chapter 7: A Sinking Feeling
Chapter 8: Uncommon
Part II: A Voice Inside
Chapter 9: Breaking the Silence
Chapter 10: From a Whisper to a Shout
Chapter 11: A Shaken Can of Coke
Chapter 12: Person Farm
Chapter 13: Growing, Apart
Chapter 14: A Roar Is Not Just a Roar
Part III: Ascension
Chapter 15: Daughter of the Commandment
Chapter 16: That Is How We Learn
Chapter 17: Pilgrimage to the City of Angels
Chapter 18: Discovery
Chapter 19: Coming Home
Chapter 20: Saying Good-bye
Chapter 21: Staring Evil in the Face
Chapter 22: Good Enough, Isn’t
Chapter 23: What She Always Wanted
Chapter 24: Take a Bow
Chapter 25: I Am Carly
Epilogue
From the Horse’s Mouth
A Conversation with Carly: The Truths and Myths About Autism
A Look Forward
Acknowledgments
Although the world is full of suffering, it is full also of the overcoming of it.
—Helen Keller
Prologue
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 c
ould 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.
I took Carly by the hand. She did not resist or melt down into one of her usual tantrums. Perhaps there was hope that she was aware that what she did was wrong? I can always hope. “We’ll come back to the park tomorrow, Carly,” I said as we walked toward home. I repeated over and over that she must only leave the house with an adult. Please, let her learn this lesson.
Back home I sighed, “I found her.” Tammy was home by then. Taryn was in the bath, and I sent Carly upstairs with our nanny to join her. I explained everything to my wife, who closed her eyes and dropped her head. We didn’t need to discuss this any further. It was just one more reminder of the challenges we faced.
The next day, my wife called a home-security company and had a chiming alarm installed so we would know when the door had been opened.
Upstairs, I heard the bath running again. The bleep bleep bleep bleeps told me that Matthew was back to defeating the warlords. The air conditioning hummed. Everything was back to the way it should be. Our house was filled with all the normal evening sounds heard in all the other normal houses on our normal block.
But this was not a normal house.
This was Carly’s house.
Part I
Chaos Is Born
There is no education like adversity.
—Benjamin Disraeli
1
In the Eye of the Storm
A news reporter once asked me to describe our a-ha moment with Carly. He wanted to understand that blinding flash of insight we had had about our daughter. I thought for a moment before replying, “There never has been a moment like that. Carly has always just been Carly.”