Carly’s Voice

by Arthur Fleischmann

  On a day-to-day basis it was often hard to see just how much Carly was growing. But when we would string together all the small accomplishments—conversations, letters, camp activities—it was a dramatic trajectory. For my birthday that summer she wrote me a letter; something I told her I valued far more than presents.

  Dear Dad,

  You have been bugging me for almost the last two weeks to write something funny or comical for your birthday. But what if I don’t want to write that now that your older you have to stop dancing with your old man butt or sleeping in your underwear? I want to let you in on a big secret about autism. But don’t tell anyone. Promise. When you sing no one with autism will ever be able to audio filter you. But I still love you.

  I love when you read to me. I also love when you just chill in my room and say funny things and I love that you believe in me.

  I have made you and mom use all your contacts to get Ellen to read my speech and have even stressed you out about school. But somehow you always come through. I know I am not the easiest kid in the world. However, you are always there for me holding my hand and picking me up.

  I heard some one say on the radio that a wise person learns from a fool, but a fool learns from no one. So you must be the fool and I must be the wise person. LOL.

  I just want to say happy birthday and I love you.

  Your little Elephant Princess,

  Carly

  Oh, by the way you better tell the readers in your book you called me an elephant.

  Carly’s sense of humor was a fuel source that kept us going through much of the drudgery and frustration. In one of her final sessions with Barb and Howard before the summer break, she responded to Barb’s question of “What would you like to talk about today?” by saying, “I want to talk about how cute I am.”

  “Okay, Carly. How cute are you?”

  “I’m so cute blind people stop and stare.”

  As 2008 progressed, we watched Carly mature and we felt more restored. With renewed energy, Tammy and I once again weighed the option of conceding to Carly’s wish to leave the Learning Center. We reconsidered sending Carly to Carlton, the school our friends Rebecca and Edward sent their son to. We likely should have looked into it when Carly first came home from Cedarview, but in the urgency of the situation, there was little time to think. Furthermore, Autism Resources ran a world-class program and we wanted to maintain consistency with the therapists and directors.

  It made me feel like a nomad—each year a new game plan, a new location—but there was no point in keeping Carly in a program where she was unmotivated and refused to make an effort to participate. Carlton was a school for kids with autism, similar to the Learning Center, however, many of the students were teenagers. It was housed in a former public school, so while ABA was used to teach the students, the building was roomy and bright, with classrooms, desks, and computers. At least Carly would no longer be the oldest student at the school or have to work in a small office by herself.

  As space had opened up, we were told, Carly could start in September. Based on our friends’ endorsement and Carly’s desire to leave the Learning Center, we agreed to make the move. Although Carlton was not a mainstream school, we thought perhaps Carly would find a kindred spirit. We were doing our best to balance Carly’s desire for normalcy with her need to learn the skills to achieve it. I was well aware that life with teens is often a battle of wills—balancing doing the right thing with doing the popular thing. But the decisions we had to make regarding Carly were often more painful than those we made for our other kids, with compromises no parents should be forced to make. Sending Carly to Carlton, I hoped, had the potential to make both Carly and her parents happy. Or was I once again talking out of my ass?

  23

  What She Always Wanted

  @Carlysvoice: Today was my third time sitting in a real high school class. It is so cool and I love doing real work. Oh just want to say hi to the girls.

  In early spring of 2010, Carly sat with Howard in a classroom, doing her best to answer a teacher’s question. Her typing was so slow that the class had moved on to another topic by the time her sentence was completed. Carly, her classmates, and her teachers were all still figuring one another out. The school buzzer sounded. Howard closed the computer and grabbed Carly’s jacket, encouraging her to get a move on.

  Carly made her way through the crowd at Western Secondary, a high school of 1,800 kids in midtown Toronto. Howard was close beside her to be sure she wasn’t trampled in the mad rush of students racing through the enormous, rambling building en route to their next classes. She seemed to hold her head high despite her signature gait that swayed side to side slightly, due to scoliosis of her spine. She had a bounce in her step, her battered red knapsack slung over her shoulder as Howard toted her laptop in its Desert Storm protective case. Carly went through laptops the way most teens go through running shoes.

  That Carly was there, if only for one class three times a week, was nothing short of a miracle. She would say it was all her doing, but the army that surrounded my daughter knows that nothing comes easy when it comes to progress.

  Carly had been at Carlton since August 2009. Changes for Carly could be like disturbing a hornets’ nest, but some nests needed disturbing and we transitioned her cautiously and with tremendous planning. By now we had had too many “fresh starts” to try it any other way. I no longer had much enthusiasm for new years and new approaches because they often went south fast, leaving me feeling more desperate as the options dwindled. The first semester at Carlton had unfolded relatively smoothly, however, and I faced the year with guarded optimism.

  Working with the school’s staff, we had developed a new IEP, Individualized Education Plan, to replace the one that had grown outdated in the past months of academic turmoil. The plan included a list of targeted behaviors to correct—sitting for periods of time without slapping the table or making loud noises; resisting the urges to shred or dump materials in front of her or to flop to the floor and bang her head; fetching and eating her lunch independently. Tasks one would expect of a fourteen-year-old but that for Carly required microprogramming. In addition to the behavioral therapy, Carlton created an academic curriculum, hoping to satisfy her keen interest to learn. But with Carly’s history of not being able to type with strangers, I was skeptical about how far this might progress before the school would give up.

  During the first month, while Howard was there to ease the transition, Carly seemed happy. She sparred intellectually and conversationally with the staff assigned to her. Carly would type, her teachers and therapists would respond, and, when they had the time, they typed what they wrote so we would have a record of the conversations. They began her English literature module by reading Death of a Salesman. “Do you think our economic downturn is like a distorted mirror image of after World War 2?” she asked her therapist, showing off.

  The young woman assigned to work with Carly didn’t know how to respond, which was probably Carly’s intention in asking.

  She connected well with some of the staff, particularly the ones willing to engage in the types of conversations Carly was interested in—the ones about pop culture or, more important, about boys.

  “Do you have a boyfriend?” she asked Kendall, a petite twenty-three-year-old who worked with Carly in the mornings.

  “Yes. But we broke up,” she replied.

  “Did you brake his heart?” asked Carly.

  “No, it was a mutual break-up.”

  “Was he cute?”

  “Yes. Very.”

  “Was he not considerate?”

  “Yes, he was.”

  “How did you meet him?”

  “Grade 11, class. In school.”

  “Are you on internet dating?”

  “No. But my friends are.”

  “Can I put you on and write your profile?”

  “Can I hear what you would write first about me?”

  “She’s a blond bombshell looking for
an adventurous and old fashion valued man to treat her right.”

  “I’m not sure I’m ready to go on online dating.”

  “But I will get you lot of guys”

  “Have you ever written a profile for online dating before?”

  “no but im sure i can do it”

  “If Howard weren’t married, what would you write for his profile?”

  “He’s not worth it ladies. Lol”

  “What do you think of school?”

  “It’s cool.”

  “Do you think any of the boys in the class are cute?”

  “They are cute but no brad pitt.”

  “What about Angelina Jolie?”

  “We can just push her out of an airplane.”

  As Carly got acclimated to her new school, so did I. On the surface, everything looked like a smaller version of the typical school our other children had attended. A low-slung brick building abutted by a tidy parking lot and slightly worn-looking sports field, a candy-colored play structure of tubes and ladders, and a line of self-sufficient shrubs lining the pathway up to the side entrance—all gave the impression that nothing more complicated than mathematics and civics went on inside. Entering through the heavy double doors (“Keep doors secured at all times!”), I looked down the long hallway lined with student and staff photographs, artwork, and crafts projects. Once I was through the foyer, however, all the similarities to a typical grade school ended. Students transitioning from one room to another seldom roamed the halls unescorted. Staff, generally young women in their twenties, walked just a few steps behind, occasionally redirecting their students with a gentle nudge or quiet reminder of the task to be completed.

  “This is Mr. Fleischmann,” said one companion to her student on an afternoon I was visiting. “What do we say when we meet someone?”

  “HellomynameisStevenit’sapleasuretomeetyouwhatisyourname,” the boy said, with a rehearsed precision and flatness of a foreign actor reciting his lines phonetically. The boy’s eyes darted anxiously at my torso or the wall behind my head.

  “Hello, Steven.” I smiled, knowing how many months of therapy it must have taken to elicit that response. “My name is Arthur. I’m Carly’s dad.” Sometimes I would offer a hand to shake. But after a young man a good foot taller than me and twice my girth had once squeezed my fingers so hard they nearly popped like sausages on a barbecue, I was tentative with the formality.

  “Oh,” he replied, looking down the hallway and wandering away, his therapist turning back to smile at me.

  Despite the enthusiastic beginning, however, Carly’s friendly chatter with her therapists ended within a few months. Much like she had at the Learning Center, she refused to write or do work for any of her teachers or therapists with the exception of completing some multiple-choice answers on worksheets. It was always hard to tell whether her refusal to type was intentional or beyond her control—and this was a constant source of frustration for everyone.

  But it wasn’t just the lack of spelling that stymied us; it was her regressive behavior. We saw Carlton as an interim step toward integration into a mainstream high school. Carly needed to demonstrate her ability to remain calm and still for the duration of a traditional high school class period before we could unleash her on the chaos of a public high school. We explained to her that as soon as she was able to sit for periods of time, focus without tantrums, and cooperate with the teachers, we would be able to try part-time days at a local high school. We knew by now what she was capable of, and she knew we knew. Yet we continuously received reports of urine accidents that seemed intentional, refusal to cooperate with simple requests, and an increasing number of tantrums. Despite Carly’s intellectual ability, the school eventually moved her into a classroom of lower- functioning children because she was disturbing her classmates.

  “What’s happening at school that would explain why you’re acting up so much?” Barb asked Carly one afternoon, after about six months at Carlton.

  “I can’t explain it,” she replied.

  “Well, what happens inside you when they ask you to answer a question?”

  “They don’t. They ask me to spell “carly” or “dip” like a moron.”

  In fact, the teachers had tried to get Carly engaged in school-work, but when she wouldn’t type, they moved to simpler tasks, hoping it would help her overcome the anxiety of typing in a new environment.

  “I don’t even have to ask you how that makes you feel, but if you can tell us what you would like us to do, maybe we can help fix this,” offered Barb.

  “They moved me to a lower class and never really gave me a chance in room 7.”

  “How did they not give you a chance!” interjected Howard. “You were in there for six months and never spelled. How is that their fault?” The frustration was clearly wearing on his nerves.

  “I did well at The Learning Center just answering multiple choice boards. It was rare I got a question wrong and Audrey saw me do it.”

  “It isn’t just the lack of spelling. You were moved because your behaviors were disturbing the other kids. They were all trying to do their work. That’s why they moved you into the other classroom. And you are going to have to do more than multiple choice if you want to convince them that you’re ready to fit into a mainstream high school,” Howard told her. He wasn’t insensitive to her struggle, but he wanted her to take some ownership of the situation.

  “I don’t need to convince them. They’re treating me like I’m dumb. When was the last time I had a legitimate pee accident? They are the real morons.”

  “This tactic is not working for you, Carly,” Barb pointed out. “You have to have find another way of communicating your frustration.”

  “I am only as good as my environment and when I am treated low it’s hard to be anything else. Don’t u read my tweets?” she asked, referring to her more frequent use of the social media network. Carly continued the irritating and circular discussion; her behavior was so Carly, but her language was so teen.

  “Part of growing up is to learn some self-restraint. If someone does something not nice to me, I don’t lower myself to their level but try to rise above it and be the best person I can be,” Barb counseled her. “Peeing in the classroom is not demonstrating the best that you can be.”

  “It’s funny that my dad can go on national TV,” Carly huffed, referring to an interview I had done a few years earlier on ABC News, “and says he believes in me but he doesn’t believe in me enough to let me pick my own school. I just want a chance.”

  She then closed her computer to shut down any further lecturing.

  “She is such a diva,” Howard fumed.

  We persevered. The rest of our family ecosystem was in relative balance, something we had craved for years. Audrey, Carlton’s director, seemed almost apologetic for their inability to connect with Carly, but we were just happy to have an environment that was willing to keep trying and a school with the resources to counter Carly’s jabs. Our family fell into a solid routine. Matthew was away in Halifax at university and Taryn had entered high school only a few blocks away from our house. Carly’s school was in the west end of the city, but Howard offered to come to the house in the mornings and help get Carly ready for school and then drive her to Carlton. He could then spend the day with his family and work on the plans for the residential summer camp he was developing for young adults on the autism spectrum. After school, Howard came back for Carly and worked with her at our home until nine or ten, when she went to sleep. It was a long day for him, but he never seemed fatigued.

  Our weekday morning routine was hectic, but probably no more so than in other homes with teenage girls getting ready for school. With some guidance from Howard, Carly would now wash and dress herself for school and was learning to prepare her own breakfast—significant accomplishments.

  Tammy would shuffle in bleary-eyed for coffee, and Taryn, who vacillated between chipper and sullen in the manner of teenagers, would come downstairs, where she wo
uld have to pass my daily wardrobe inspection. I often shot Tammy a look to see if she approved of the amount of skin showing below Taryn’s neckline. Taryn and I had entered that phase between a father and teenager that sometimes felt like radio silence. Like an astronaut, I prayed we’d resume communication when the obstacle blocking our frequency cleared the path.

  “Is leftover shepherd’s pie okay for breakfast?” Taryn asked one morning, poking through the fridge.

  Now it was my turn to roll my eyes. But compared with our daughters’ childhood—a time of flying food, banshee screams, and two hours of sleep—I was in heaven. I had begun to view managing Carly’s life as a marathon, not a sprint. There would be times we could surge with energy and change. But, there had to be periods of stasis, too. In a life filled with so much turmoil, lack of change was refreshing. So while Carly may have resented her predicament at Carlton, she would have to struggle through good days and bad. My back hurt at the thought of exploring any other options.

  Although school was not a high point, Carly was becoming more engaged in her role as an autism spokesperson.

  “Barb, should I go on Larry or Oprah?” she asked. Early in March of 2009, Carly had gotten it into her head that she’d like to be on Larry King Live. She had been getting messages on her Twitter page from people who thought she should try to get on a talk show to inspire others with her story of finding her inner voice. Not that Carly needed encouragement to dream lofty dreams anymore, but her followers were fueling her ambition nonetheless.

  “Which one would you prefer to be on, if you had a choice, Carly?”

  “I want to do Larry.”

  “Why Larry?” Barb mused. To her recollection, Carly had never expressed a real interest in Larry King.

  “He’s so old it takes him forever to ask a question. Even at the speed I type, I can get my answer out before he speaks three words.”

  Howard laughed his silent laugh, more of a nod, smile, and look of parental amazement. Barb shook her head. “Carly, you are one funny kid.”