Carly’s Voice

by Arthur Fleischmann

  The moon shined in a straight line on the girl’s head like a flash light beam. She stood in between four drooping old trees. She saw all the animals getting closer and closer to her and she started to tremble. Arthur walked towards the frightened little girl.

  We all knew she saw him when her trembling stopped. In fact every thing stopped.

  Her chest stopped moving. it was like watching a wall. Well, Arthur started to circle her

  Arthur’s head turned to Hoowie the owl. His mouth opened and he said, “You stupid owl. This is a puny little girl.”

  The girl moved her head slowly and said, “Who are you calling puny?”

  Every one around her was in shock. See as you know humans never, and I mean never, are able to understand what we say. And here is a human that can.

  Arthur stared into her eyes. He turned to all of us not with a look of shock like what we all had on are face but with a look of satisfaction. He said in his deep voice, “The prophecy has come true.

  We were to understand that the narrator, the gecko, was Carly, and the character of the princess was based on Taryn. Through the tale they are inextricably intertwined, helping and scolding one another just as sisters do. We all got parts in Carly’s play. I am a lion, fierce king of the jungle. Blush. Howard is Hoowie the wise owl. Barb, an adoptive mother of the princess. Matthew received his Carly bashing, showing up as the princess’s nemesis, an ugly troll. And Tammy is Tamma, the elephant mother of the human princess. If it weren’t so funny, Tammy would be deeply offended. When I asked Carly how her writing was going once, she said, “good. Tamma dies by exploding cell phone. Just kidding.” Tammy does spend an inordinate amount of time on her cell, so there is some truth in the jest.

  As the story unfolded, a journey “through the gauntlet” to prove the princess’s merit, we saw creative writing as a possible outlet for a nonaudible mind. It was also another way for us to peek inside Carly, to learn by observation. Although fantasy, the tale was reflective of Carly’s life, and I was curious to see how she would portray her world. But creative writing is challenging under the ideal situations, and Carly’s pace of typing, and struggles with focus and sitting, still made the endeavor formidable.

  One afternoon Matthew was online with Carly—her preferred way of speaking with him, too.

  “Hi, Carly. Do you want to talk?” Matthew asked her.

  “no working on story. mom wants lip stick on a pig,” she responded.

  “I’m glad you’re working on your story again. What do you mean mom wants lipstick on a pig?”

  “she wants me to finish my story too fast and it’s not going to look good. like a pig with lipstick. Duh.”

  “Oh, sorry,” Matthew replied, missing the joke.

  “you should be,” Carly retorted.

  “someone’s got attitude!”

  “so put it away,” Carly sassed.

  “you’re full of it today, aren’t you? why don’t you put it away?”

  “full of what?” she teased.

  “attitude,” Matthew replied, naïvely.

  “duh i know sarcasm.”

  We think we know our children—they are either easygoing or intense, pleasant or cranky, book-smart, street-smart, or not-so-smart. Carly, however, was a medley and constantly changing. It was unnerving. When she was a small child, I imagined that she was like a stranger in a strange land. Perhaps she had conversations in her head, but she lived in a world where those around her spoke an incomprehensible foreign tongue making her a perpetual tourist among us. But I was wrong. She had been listening, learning, thinking. The far-off stares were not signs she was lost. She was pondering and processing. Writing lines of copy for her book, perhaps. Coming up with jokes or clever observations. And thinking—always thinking.

  While I was amazed to find that Carly was a clever, sassy kid, it was also confounding. Carly neither lived in the world of the profoundly disabled nor fit in our world. Her intelligence was opening the door for an exciting future; her behavior kept her tethered, unable to cross the threshold. I felt both grateful and resentful. I knew many other families coping with children with autism who had not had the simple, powerful gift of having a conversation with their child. But I knew far more families who lived traditional, calm lives with their children at home, progressing normally.

  It was Pandora’s box. The more she opened up, the more she yearned to be like everyone else.

  “Why can’t I talk like you,” she asked Barb.

  “Your muscles don’t work properly, but you do a great job with your computer.”

  “but what’s wrong with my voice.”

  “Nothing is wrong with your voice. Your voice works fine. It has to do with the muscles in your mouth and tongue.”

  “fix it. I want to talk like Taryn.”

  “I want to be honest with you, Carly. We can work on your sounds, but I don’t think you will ever talk like Taryn,” Barb confessed. I was appreciative that she was having this conversation with Carly. I already felt like I delivered enough of the bad news in her life.

  “that sucks,” Carly responded. “whats the point if I can’t be normal. I want to be normal. Help me.”

  “What’s normal?” asked Barb

  “like every other kid my age.”

  With her growing vocabulary and self-perception came the recognition of how unlike her twin she was. Their intellect and humor may have been similar, but that was about the extent of what they had in common.

  One Wednesday evening, the night before she was to return to the respite program for the balance of the week, Carly wrote, “I want to make money.”

  “Why do you need money?” I asked. Carly had never asked for anything material.

  “I want to buy the house next door. Because I want to live beside you,” she replied before running from the room, flinging herself to the floor in the front hallway.

  I was not prepared for the answer. Taryn went quiet and looked down at the table. Howard and I turned away from each other so as not to see the mutual hurt. The more we got to know Carly, the more we realized how unfair her life was becoming.

  “We are not sending you away as punishment,” I told her the next morning. “The staff at Cedarview is trained to help you in a way we can’t at home.” But I had trouble convincing myself, and realized that Carly was too intelligent to be comforted by this rationalization, either.

  With Carly more frequently expressing her unhappiness, it was clear we’d need to start thinking about other options. Over the course of the year, I had made some peace with the decision to place Carly at Cedarview. Her friendship with Mel, her academic progress, and her accomplishments in communication all felt like triumphs that were worth the emotional price of sending her away. These triumphs, however, did not make living together full-time a possibility. Carly still required around-the-clock supervision. Residential care was our survival plan.

  I found myself somewhat jealous of parents with children of lesser cognitive ability, as if they were more justified in placing their child in residential care—a callousness of which I am now ashamed. But we were like itinerants, never able to set down roots, constantly on the move.

  Everything in our family was lived on extremes. When Carly was home, her presence was enormous and all-consuming. When she was gone, I felt empty and hollow. Carly’s intelligence far exceeded that of most kids, but her behavior was far below that of the mainstream. The polar extremes were exhausting. Our life was too black-and-white, and I yearned for some gray—some in-between. I hoped that when Carly was away, absence would make the heart grow blinder and in time I would ache less while she was away, and be more at peace when she was at home. For the time being we would have to live in a binary world—Carly here or gone—and that would have to be good enough. At least for a little while.

  Part III

  Ascension

  Sometimes when you are in a crowded room the best way to be heard is to yell. But the best way to be understood is to explain your
self.

  —Carly, June 2009

  15

  Daughter of the Commandment

  In a world of silence, communication is everywhere. You just have to know how to look.

  —Carly

  It is a ritual in our religion, as it is in many others, to celebrate a child’s coming of age. For parents of someone who is remarkably challenged, these milestones are bittersweet. We had long ago put to rest any hope that Carly would have the enjoyment of passing through the evolving markings of life: a first date, high school graduation, attending university, walking down the aisle. We had to content ourselves with celebrating Carly’s own triumphs, such as toilet training and, on occasion, writing.

  Pushed by Barb, however, we reflected on our girls’ bat mitzvah, the Jewish custom of marking the move from childhood to adulthood—a symbolic transition when a child takes responsibility for her own acts of good or evil, generosity or selfishness. Jaded into still seeing Carly for what she could not do, we assumed this celebration would be one-sided in favor of Taryn. So many aspects of Taryn’s daily life were defined by her sister’s autism and disability, and in this case we felt she deserved the same experience her friends had. But, as two of Carly’s greatest advocates, Barb and Howard insisted that Carly play a meaningful role in the religious service and celebration that would follow.

  So as the fall of 2007 approached, we encouraged Carly to write a short speech that we would read at the event scheduled for January 2008. She and I had been having short conversations over email and instant messenger. I was generally home too late from work or the gym to eat dinner with the kids. So, after her bath, Carly would sit at the table while I ate, and we would either play a game of Connect Four (a game she quickly learned to trounce me in) or talk. Carly would sit with the laptop in front of her, me with my plate in front of me. I would encourage her to ask me questions or tell me anything she wanted. Had we eaten dinner as a family, all sitting around a table cluttered with dishes, we would have been focused on helping Carly feed herself properly and conversation would have been impossible. Although unconventional, it was our way of bonding.

  “what will I say?” she asked me, referring to the topic of her bat mitzvah speech.

  “I think you should thank people for coming,” I replied. To date, her conversations and emails had been short and simple. We knew at this point that she was witty and had a good vocabulary. But other than The Elephant Princess, Carly had never written anything longer than a few sentences, so the notion of a speech was daunting.

  “Maybe tell them a little bit about what it’s like to be you. People are curious to understand autism, and now that you can write, you have the chance.” I was enjoying the new stage of our relationship. Carly and I were actually conversing. The first twelve years of her life had been a noisy silence devoid of language or meaningful answers. As painfully slow as it was, I relished these interchanges and the ability to offer advice. I could be more than a caregiver: I could actually be her father.

  Though she had been writing for the past year, we still had limited insight into Carly’s puzzling behaviors, explosive outbursts, and odd noises. Carly was anything but calm, which made typing an onerous task. Her emails or instant messenger conversations over the past twelve months generally consisted of short requests. She also told us, several years later, that in the beginning she didn’t like the sensation of touching the computer keys. Autism can affect senses in ways we can’t even imagine. What feels like nothing for neurotypical people may be excruciating for those with autism. In these early days, after she learned to type, Carly’s language was terse and staccato because of the formidable challenge; the pace was creeping.

  To help her write her speech, I would prompt her with questions or thoughts, and she would respond with answers. We would then cut and paste these phrases together into paragraphs. I felt like we were building a house out of pebbles. But it was the first creative project we collaborated on, and I loved it. Not only was I helping Carly accomplish something powerful, I was learning so much about her. By the time the speech was complete, I would have a dramatically different view of my daughter.

  Though progress was slow, she was exploring feelings, reflections, and self-knowledge that she had not yet expressed in her writing. In their afternoon sessions, Barb would work with Carly by prompting her with additional ideas when she seemed to stall and keep her on task with a series of reward-based goals. But soon we started to see that Carly had her own ideas of how the speech should unfold.

  “I want to pick a Jewish topic to talk about,” Carly told Barb one day when the speech was a paragraph or two long.

  Barb went on to explain a concept known as tzedakah, the act of charity.

  “I know what it is,” Carly informed her.

  “How do you know that, Carly?” Barb asked her, doubtfully.

  “At your school,” Carly retorted, referring to Northland, where the two had first met. At that time, Carly was at her most erratic and uncontrollable self. Although she participated in activities such as music, stories, circle time, and crafts, no one really considered that she might actually be absorbing the more subtle and intellectual concepts such as the spiritual value of kindness. That was seven years earlier, and we were amazed that she was able to comprehend the mature concept of charity—much less remember the Hebrew word for it—so many years later.

  “What do you think of my idea?” Barb continued.

  “I like it,” Carly replied.

  Barb suggested that perhaps, in preparation for the bat mitzvah, Carly could actually perform an act of altruism, not merely write about it.

  “I want to make food for people who need it,” Carly decided.

  While it is not unusual to partake in such a project as part of the coming-of-age ritual, I was awed by my daughter’s enthusiasm to help those less fortunate. Those less fortunate? Who could possibly be less fortunate than a girl possessed by a driving energy that produced destruction? A girl who was showing the signs of creative thought but who could not control the actions of her body? And yet in the following weeks she actively participated in baking cookies, shopping for food, and paying a visit to a men’s homeless shelter to make the donation. As she sloppily mixed the cookie dough, my hand over hers gripping the whisk, I wondered what else was going on inside her head. Even as I felt a warm sense of pride at Carly’s thoughtfulness, sadness clouded the moment. Despite our best efforts, she will always require someone else’s hand guiding hers.

  Sitting at my desk one morning in early October, I saw Carly sign onto her instant messenger. I instinctively smiled. “Carly has signed in,” my screen read, almost like a cheerful accomplishment in and of itself.

  “I want to write a letter with you,” she typed.

  “That’s a good idea,” I replied. I was thrilled that Carly was beginning to reach out and use her voice in ways that extended past requesting chips or popcorn. “You need to write a letter to Marty and Pop Pop,” I reminded her. “To thank them for your new computer.”

  “I want to write a different one,” she said. “I want to write to Ellen.”

  The time code at the start of each message on my computer screen taunted me. This simple request would take no more than thirty seconds coming from any other twelve-year-old. But Carly had to scan the keyboard and peck one letter at a time. She often needed breaks to stand up and jump around to release the eternal restlessness that haunts her body. This short conversation took an excruciating forty-five minutes. During the time she made the request, I had held a brief meeting in my office and written a memo of my own.

  “Who is Ellen?” I asked. No response. Knowing that Howard would be sitting at Carly’s side, I persevered. “Who does she mean, Howard?”

  “The one I dance to,” she continued, finally. “I can’t spell her last name. It’s too funny.”

  “It’s Ellen DeGeneres,” Howard informed me. “That’s who she dances to.”

  “That’s funny, Carly,” I replied, sh
aking my head. As Carly never sits calmly in front of the television, I didn’t immediately make the connection. “Okay. What do you want to tell her?”

  With over an hour invested in this quest, I knew I had to press on. We had learned long ago to resist the temptation to write long responses or ask complicated, run-on questions.

  “Howard says that she shares the same birthday with me.”

  “Cool. What do you want to tell her?”

  “I want to make a wish.”

  “You want to tell Ellen your wish? What’s your wish?” I was now thoroughly intrigued. If you were asking for something for the first time with a newfound voice, what would it be? Would her wish be for something frivolous like a computer game console or iPod? Simple, like a signed autograph from Ellen? Other than requests for basic needs or treats, I had never known Carly to ask for anything.

  “cant say now will telll you later,” she teased.

  After taking a break for lunch, which allowed me to cram two hours of work into thirty minutes, Carly came back online and we started the letter. “I think you should start by introducing yourself, Carly,” I suggested.

  “my name is carly I am from Toronto,” started the first letter my daughter ever wrote. “I have autism I cant talk I can spell on myyy computer,” she continued. I was struck by the fact that the onerous task of typing would make Carly’s conversations so direct and to the point. Any extra adjectives, adverbs, even a simple article could add minutes to the task.

  “its hard for me to sit still or play a game.”

  “How does this make you feel?” I suggested.

  “it ok sometimes but I get sad and frusterrateted. I want to be like other girls.”

  This was not the first time Carly had made this painful admission, but it was still new enough that it stung. It had been easier to think that she was so intellectually challenged that she didn’t notice how far she stood from the crowd. Those who make odd noises, flap their hands, walk in a shuffling run or a stiff-legged march, are they aware that others notice? Do they care what others think? How misguided I was to think they don’t.