Carly’s Voice

by Arthur Fleischmann

  Excerpt from psychological assessment, February 2000:

  Dr. Susan Marcotte, PhD, C. Psych Registered Psychologist

  Carly attends school in the morning and therapy in the afternoon. Carly is a child who needs a lot of direct one-on-one care. She can be extremely destructive and dangerous to herself, both at home and at school, unless she is well supervised. Carly spends a great deal of time out of focus and also rocking on a chair. Her communication skills are limited . . . Carly has recently begun an Applied Behavior Analysis Program.

  ASSESSMENT RESULTS

  It is evident from this profile that Carly continues to demonstrate global developmental delay and functions within the Developmentally Disabled range. Carly presents as a child whose presentation in all three domains, stereotypic behaviors, communications skills and social interaction skills, falls within the spectrum of Autism/Pervasive Developmental Disorder. Carly is a child who avoids establishing eye contact, will often spend her time spinning items and rocking back and forth. She makes sounds repeatedly and used to flap her hands. In group settings, Carly tends to stay to herself. She does not use toys appropriately and will often respond to requests with negativity.

  Carly is not an easy child to look after and she is a child that requires a great deal of direction in order to assure that she is using her time productively. Developmentally, Carly functions between an 18-month and 2-year level. Carly’s social and communication skills are her weakest areas of development. Cognitively, Carly functions between a 2- and 3-year-old level. Carly appears to have benefitted from Applied Behavior Analysis intervention in the short time period in which she has begun. It would benefit her to continue receiving this type of approach to her learning. Carly’s parents may wish to consider a year in which Carly receives ABA half days and some half days with an opportunity for inclusion in a regular Senior Kindergarten classroom with a shadow . . .

  Tammy’s friend Beverly, who was a grade-school teacher, suggested we visit a small elementary school about fifteen minutes from our house. Crestwood Heights was a community school nestled into a tree-lined neighborhood of curved roads and straight hedges. Walking through the front door, we felt like we were stepping back in time, in a peaceful, nostalgic way. The school had a special-needs classroom, and while most of the children would be younger than Carly, who was around six years old, the small class size and the offer of allowing us to bring in an educational assistant trained in ABA was about as good as it could get. We would never know why this school had never been presented to us as an option in the past. The only task remaining was to find a worker who would meet our requirements—someone patient, energetic, and willing to be trained in ABA and work full-time with Carly. Furthermore, she would have to be an appropriate teaching assistant in the eyes of the school board.

  Several years earlier, Beverly had introduced us to a young woman named Dana Dalal, who had been a teacher’s assistant in Beverly’s classroom. “You have to meet her,” Beverly had told us on a number of occasions. “She works with a little girl like Carly who also goes to Northland part-time and is in my classroom in the afternoons. Dana is amazing.”

  When Tammy finally called to inquire if Dana would be willing to work with Carly for a few hours on the weekends, we learned that she also worked part-time for Liz, our ABA provider. Autism, it turns out, is not only a closed world, it’s a small one, too. After meeting her, we called Liz to request that Dana pick up some after-school ABA shifts with Carly.

  Dana was calm and professional and, most important, not rattled by Carly’s outbursts, tantrums, and the constant humming noises she made, like a teakettle wailing endlessly for attention. She peered through dark-rimmed glasses with an intensity and wisdom uncommon in any twenty-three-year-olds I knew. The fit with Carly was important, but as Dana was at our house twenty hours a week and occasionally came to synagogue with us on Saturday mornings to help us with Carly, the fit with us was equally critical. Carly’s therapists held a position in the family somewhere between friend and family member. They are often present at mealtimes, family celebrations, and the inevitable arguments that break out between stressed-out spouses.

  When it came time to find the educational assistant to help Carly at Crestwood Heights, we asked Dana if she had a clone or knew anyone like her who might be interested. Parents of kids with autism covet one another’s prized therapists the way some people covet their neighbors’ houses or cars. “Well, actually my brother is looking for work. He’s just finishing his early education certification.”

  Carly had had only female therapists and helpers in the past. Part of their task was to help her bathe, dress, and use the bathroom. Neither Tammy nor I was too sure how we felt about a young man taking on such a personal role. But we agreed to meet Howard, because he would be working in the classroom with a female teacher.

  Though they lack a physical resemblance, Dana and her brother shared a similar wiring. Their mother had made a career of early childhood education and owned a nonprofit group of day-care centers. In fact, she was a close friend of the executive director of Northland. It was evident that this was a family dynasty of talented people who loved working with children—especially those with exceptionalities. Howard had the perfect educational background and, as an avid summer camp counselor, we knew he had the required physical stamina and creativity.

  I don’t know yet whether I believe in divine intervention. For the most part, I think we get whatever we get and it’s up to us to make a go of it. But like Mary Poppins, Howard dropped into our life at precisely the moment we needed him the most: August 6, 2001. Once Howard arrived, it was like he had always been there.

  Although quiet, Howard exuded confidence with Carly. He had access to Carly’s ABA team for training, but his intuition proved stronger than any textbook education we could have given him. While some might have been put off by his take-charge approach and the fact that he lived by the principle of asking for forgiveness, not permission, we welcomed his leadership. I came home from work one evening to find latches drilled into our kitchen cabinets to halt Carly’s invasions and a swinging chair from IKEA hanging from our basement ceiling. I was impressed with Howard’s initiative and tenacity but could never have imagined how much we’d come to rely on him.

  The first year at Crestwood Heights, Howard developed Carly’s curriculum using the supplies and tools in the classroom, the principles of Carly’s ABA program, and his own imagination. The teacher had returned after taking some time away from teaching and seemed enthusiastic to have Howard run the show. Tammy and I appreciated that she spoke of Carly warmly and glowingly, but it quickly became clear to us that she had little intention of rolling up her sleeves to learn the tough lessons of educating a youngster with autism. She let Howard tackle the tricky task of keeping Carly focused on her work.

  Carly’s ever-expanding team resembled a Rube Goldberg device—a series of interconnected parts, each serving individual functions, tenuously connected to one another. Howard became the lynchpin as he spent the greatest amount of time with Carly. At first Howard spent the school days at Crestwood with Carly, but within months, he was working with her after school as well. Although he was respectful of the ABA team leader and other therapists, it was clear within a matter of weeks that his bond was far tighter with Barb than with any of the other specialists. Where ABA followed rules and protocols, Barb and Howard followed Carly. They seemed to notice details about her that others missed.

  “She’s smart,” Howard told us.

  “Uh-huh,” I responded, not wanting to dampen his enthusiasm.

  We had seen the progress reports from school. Carly was beginning to point to letters on a letter board to spell words like cat or dog. She was completing 100-piece jigsaw puzzles faster than an adult. But the overall impression she gave—with her hyperactivity, table slapping, and wailing—made it hard to see our daughter as intelligent.

  “No, really,” he protested, sensing my skepticism, before recounting a stor
y that had happened earlier in the week.

  “Just watch Carly for a second,” he had said to the teacher. “I’ll be in the hallway.”

  The small bag of potato chips Howard had been using to reward Carly for completing a sorting exercise lay folded shut on the classroom table.

  “I’d put those on your desk,” he suggested to the teacher as he walked out the door.

  “Howard, I’ve been teaching school for twenty-five years. I think I can keep Carly out of the chips for a minute,” the woman replied.

  When Howard left the room, closing the split door behind him, Carly grabbed for the crumpled yellow bag. One step ahead of her, the teacher snatched them away and put them on her desk at the front of the room. Having missed her chance, Carly sidled up to the desk, giving the woman what seemed to be a nuzzling.

  “Oh, sweetie,” she said, assuming Carly’s act was one of affection.

  Quickly, Carly attempted to reach around the teacher for the bounty, but her teacher was one step ahead of her again and moved the remaining chips out of Carly’s reach.

  Thwarted, Carly picked up the teacher’s reading glasses and flung them to the center of the class. As the woman bolted to catch them, Carly snapped up the bag and dumped the remaining chips on the desk before taking handfuls and shoving them in her mouth with a satisfied “mmmmmm.”

  Excerpt from developmental pediatrician’s assessment, February 10, 2002:

  Dr. Nancy Robards, MD, FRCP Developmental Pediatrician/Director Child Development Centre

  Carly has been experiencing behavioral problems for some time, however, this has been increasing over the last 3–6 months. This has been manifested by increasingly restless behavior, impulsivity and frenetic-like activity. She has developed some compulsions including touching things and tapping people on the head. She is unable to sit still and is in constant motion. She has an increase in stereotypic and repetitive behavior including grinding her teeth, increased sensitivity to noise, increased self-injurious behavior including head-banging . . . she has also experienced some emotional liability manifested by crying for thirty minutes to one hour at a time. There is more restlessness and she has developed significant foraging behavior. She will often rummage through the kitchen looking for food or if food is out anywhere, she will go through the boxes looking for different items. She does eat some of this food, but really it is more the looking around for food that is problematic as opposed to overeating.

  FORMULATION

  We had a long discussion with Carly’s parents regarding which were the most important target symptoms at the moment. We agreed that her repetitive behaviors and increased restlessness and activity were the most concerning . . . we have recommended the decrease in the dose of Luvox . . . we discussed the use of two other medications . . .

  From Carly’s eighth to tenth years, her education once again became a frayed patchwork of in-class and homeschooling. Howard needed time off during the day to complete additional college courses and was only able to work with Carly in the afternoons and weekends. A fight ensued with the school board over who would take over his job with Carly at Crestwood Heights. Our position was that a suitably trained ABA therapist was critical; ideally, someone that we selected and trained. The board’s position was based on union seniority, and they thought that a thirty-five-year-old male accounting clerk who worked in the school system and wanted to work in the classroom was an appropriate choice. The winds that had blown favorably for the previous two years had clearly changed direction.

  Tammy called to complain that Carly required ABA to learn and that putting her in a classroom for developmentally handicapped children with an untrained worker was negligent, if not criminal. “We have written reports from Carly’s psychologist and developmental pediatrician stating that she requires ABA to learn new skills,” she told the school superintendent. He resisted, claiming that ABA was the “flavor of the month” in treatment of autism and that Tammy had no right to interfere with the implementation of special education in the Toronto District School Board. “You do not get to determine how we teach children,” he said, and hung up.

  A series of pointless emails of escalating anger followed. As we sunk deeper into the bureaucratic quicksand, I decided to call the board directly and set up a face-to-face meeting. We agreed that Tammy wouldn’t attend and that we’d try a good-cop/bad-cop approach. Tammy had already declared which one she was and carried a grudge as a form of exercise. I could at least fake tolerance.

  I was led to a small conference room in the sprawling maze of cubicles and offices at the board of education. I gathered my thoughts and channeled calmness as I prepared to explain that their staffing plan was a misguided idea and would not be in Carly’s best interests.

  The superintendent did not attend, instead sending one of his direct reports. A woman in her late forties entered.

  After a few pleasantries, I came right to the point. “Carly has been making real progress,” I said, hoping that a positive start would ease the conversation. Keep it all about the student, I reasoned. “I’m sure we all want what’s best for her. Tammy, our doctors, and I just don’t think it’s best for her to have someone without the right training. Kids with autism need the stability of routine, and her ABA program is her routine,” I pointed out.

  “Union rules are unequivocal,” she told me. “We must give priority to union members with seniority and cannot let one of your therapists jump the queue.”

  “I don’t understand how a man who was an accounting clerk last week is suitable to work with a girl with autism this week,” I said, hoping my sarcasm underscored how ludicrous the board’s plan appeared.

  “I’m sure we will provide the candidate with appropriate training to support the teacher,” she parried.

  “Is he trained as an ABA therapist?” I asked rhetorically. “Will he come to our house for team meetings and to understand how to work with Carly?”

  “All of our teachers take a seminar on ABA and autism now,” she replied, referring to a two-hour lecture on the definition of applied behavior analysis provided to special ed teachers.

  “Come on, Deborah.” I exhaled. “You know that’s not what I mean. We are willing to provide hours of training every week and the supervision of a Board Certified Behavior Analyst as well as a registered psychologist. And we’re not even asking the board to pay for it!”

  But I had my suspicions about what this was really about. The school board had caught wind of us bringing ABA into the classroom—a policy no-no. Furthermore, by bringing Howard into the school, even though he was officially an employee of the school board, we had compromised the seniority policies of the union. This seemed to be all about keeping the union happy.

  Deborah continued to sit impassively. At the moment, she had all the power and she knew it. In its black-and-white operating system, public education was blind to the odd color of autism.

  “So . . . you’re telling me that to ensure my daughter’s right to a proper education, I need a lawyer to discuss this further?” I asked. Her calm manner taunted me.

  “There’s really little else I can offer.”

  “So, you’re telling me I need a lawyer to ensure my daughter can return to the classroom?” I repeated, the burn rising inside me. I needed to hear her invite me to battle.

  She rose and held the door for me, making it clear the conversation was at an end.

  I had my answer.

  On the way home, I phoned Tammy. “I’m calling Martha,” she said, referring to our friend Martha Ellison, one of Canada’s most respected civil rights litigators. Within hours, she successfully petitioned the court for an interim injunction to allow Carly to stay in school with an appropriate assistant—one that Howard helped us find. The judge agreed the school board was required to provide Carly with the appropriate level of support and was running the risk of irreparable harm to Carly if it did not. Carly was back in school with an ABA therapist, and we learned the cynical lesson that it sometimes t
akes a lawyer to get an education.

  By the following year, Carly no longer fit the profile for the classes offered at Crestwood Heights, even with a therapist present. She could not join “typical” classes for kids her age, and she was getting too advanced intellectually for the developmentally handicapped classroom she was in. Looking for a suitable classroom, we once again returned to the neighborhood public school she had attended several years before, armed with our injunction to ensure access. Howard had completed his studies and returned to Carly’s side as her one-on-one classroom aide. We experimented with a first-grade classroom, since Carly lacked the academic skills to join an age-appropriate fifth-grade class. While she couldn’t read or write, we reasoned that she would at least absorb some of the material.

  Some days Carly was reasonably calm and seemed happy to be with typical kids. Other days her behavior was out of control. It was a tennis game of success and failure—one day sitting quietly able to do the schoolwork of her peers, others so disruptive Howard would withdraw Carly from class and bring her home.

  Howard was a one-man school system; there was no substitute teacher were he to get sick or need a day off. We lived in fear of anything that would prevent him from arriving at our door in the morning—a personal appointment, a snowstorm, even a cold.

  “Howard, I forbid you to get sick,” Tammy once half-joked with him when the flu was ripping through our community. But it was no joke, because without Howard, we were adrift in an ocean of Carly’s mayhem. Whether out of good luck or his sheer determination, Howard has never missed a day of work without devising an alternative plan for Carly.

  After six months, it was clear that Carly was not ready for a mainstream classroom, with its twenty-eight children and need for quiet and discipline. In the middle of class she would stand up and repeatedly slap the table and yelp, startling the students. This time, we didn’t need the principal or school board to push us out. We knew it was time to go.