Carly’s Voice

by Arthur Fleischmann

  We had read about ABA and seen a news piece the previous year, but between the doctors’ appointments, getting Carly enrolled in Northland, and Tammy’s cancer, we just hadn’t pursued it. The woman went on to tell us the name of her son’s therapist, something we would later learn was an immense act of charity. Canada has no national program of support for children with autism and nothing akin to the IDEA act in the U.S. It was up to the parent to scrounge for resources and pay out-of-pocket for therapy. But with the rising rate of autism, ABA therapists were in short supply and high demand. Any hours of therapy you could secure for your child were precious.

  The little boy was attentive, sweet, and calm. He seemed happy. He was everything we wanted Carly to be. That afternoon, we became converts to the religion of ABA.

  The next day, Tammy contacted the therapist, Elizabeth Benedetto. ABA, with all of its imposing procedures, tasks, and trials, spread through our life like a virus. The annual fees would amount to $50,000 to $60,000 a year; we had no idea how we were going to survive financially. Carly had been attending Northland for about two years, and while her progress was not apparent to the untrained eye, the school gave us the perception of stability.

  Carly had evolved from sitting on the floor rocking and crying to being able to subtly fend for herself. Now four years old, Carly would scamper to the kitchen, grab a chair, and pull it over to the cupboard above the microwave where she knew we kept crackers and Fruit Roll-Ups—snacks parents hate to admit they buy. Though this skill in itself was an accomplishment, the destruction she would wreak negated any pleasure in her progress. Carly would hurl the contents of the cabinet to the floor, rip open the packages, and dump their contents—all quicker than a tired adult could run to stop her.

  The tuition at Northland was over $20,000 and only through financial aid were we able to get by. In order to receive a fee reduction, we had to go through an annual review with the school’s financial director. It felt like a humiliating medical procedure with our private parts exposed in the chilled air of the examination room as he pored over our tax returns and reviewed the expenses of raising Carly and her two siblings.

  Tammy and I concluded that if we depleted our savings and extended our mortgage, we could afford one year of the intensive intervention while keeping Carly at Northland. Everything we had read made us believe that it was now or never. A child’s development was most easily influenced before they were six, we were told by autism service agencies. The combination of integrated services at school and one-on-one ABA in the afternoons and weekends was our best hope of snatching our daughter back from the thick murk that enveloped her.

  If our life had been invaded by outsiders prior to starting ABA, once Elizabeth, her second-in-command, Kevin, and their troupe of young, energetic therapists entered our house, any sheath of privacy was stripped away. Our home became a laboratory of social science. What makes ABA’s approach different from other forms of autism education is that it is scientific, not subjective. The psychologist and therapy teams develop plans on current behavior, and set goals for the student. Data is taken to track performance and remove the personal bias of the individual therapist. In this way, a child’s progress is driven by her ability, not by the whim of the instructor. At first, every task is broken down to its core and repeated with mind-numbing frequency. With each repetition, the therapist tracks and graphs the child’s success and failure rates and occurrences of specific behaviors and actions. Positive outcomes are encouraged through the use of reinforcers—a few minutes of play with a fiddle toy or a treat to entrench the positive behavior. In Carly’s case, we learned that she would dance on the moon for Lay’s potato chips.

  Our basement became filled with the telltale signs of the ABA therapists. Bins and Ziploc bags filled with assorted plastic pieces, blocks, toy animals, and rings—all debased from their intended source of childhood merriment to become scientific equipment. Sitting at a small brightly colored picnic table in our basement rec room, Carly would spend the recommended forty hours every week sorting, stacking, and constructing while the therapists encouraged, cajoled, timed, and charted her results. While I didn’t fully understand the approach, the image of the boy at the hospital with his Game Boy, so typical, so normal, propelled us both forward.

  In addition to mornings at school and afternoons and weekends of ABA, we drew Barb, Carly’s speech-language pathologist, tighter into the ever-expanding team recruited to prop, push, and drag Carly out of her depths. While ABA suppliers and therapists would come and go over the next decade, Barb Nash-Fenton would become a steady fixture in the three-ring circus of our life with Carly. Barb was unwavering in her belief and commitment. She and Carly worked together several days a week at school, and later we would engage her to work with our daughter at home in the afternoons.

  Barb was part mother, part teacher, and part magician. A petite woman, then in her early forties, she had a quiet, confident demeanor. Her weekly reports and recommendations read like marching orders. As lost soldiers, we were all too happy to cede control. After years of seeing doctors who offered little practical help, it was a relief to have Barb’s calm direction. Her presence alone brought the tension down. With daily contact at Northland, Barb witnessed a side of Carly that the rest of us did not.

  “There is something there,” she would say. “She knows how to get herself out of situations she doesn’t want to be in. She problem solves, and that takes intelligence,” she encouraged us. After years of people diagnosing Carly and itemizing her deficiencies, Barb was the first person to chronicle Carly’s strengths and look for ways to exploit them.

  Barb worked alongside the ABA therapy team. While they focused on skill mastery and behavior control, Barb explored ways to help Carly communicate. We reasoned that Carly’s frustration and outbursts must at least be in part due to her inability to make her wishes known.

  Barb had started with PROMPT, a form of speech therapy where the therapist manipulates the student’s jaw and mouth into position. Words were broken down into single sounds, and then strung together. “We got the c sound out of Carly today!” one of her post-session summaries observed enthusiastically. PROMPT seemed to work a bit, for a while. Carly could make sounds like ooce for juice, cackah for cracker, and even say mama. But over time, even these simple words disappeared. I was thoroughly disheartened when meaningful sounds were mastered one week, then lost the next. There were periods where Carly would make a step forward, being able to say Matthew’s name (“Ma-ah-foo”), for instance, only to have the skill evaporate. For months they would work on a single consonant. At this rate, we’d all be old before Carly could say her name.

  The ABA therapists would then be instructed on how to continue to prompt Carly to use this sound as much as possible through the week. Maybe she’d be able to do it again next week. Maybe not.

  Barb added sign language and then picture exchange techniques—endlessly looking for ways to help Carly communicate. This last approach, known as PECS, was decidedly low-tech but effective. Carly had stacks of cards containing photographs of things she might want and she would merely have to point to make a request. Although cumbersome, it beat screaming in frustration. Carly quickly got the hang of selecting cards for what she wanted most. Images of juice, cookies, storybooks, and swimming were used with frequency. Broccoli and carrots much less so. She never pointed to “I love you.”

  Barb believed that Carly’s inability to communicate fueled her anguish and tantrums. At the end of each weekly home session, Barb painstakingly drafted clinical notes summarizing the appointment and providing us with instructions that read like a how-to manual. She wanted us to use multiple forms of communication, the theory being that one skill builds on the other.

  Carly had mastered a hard g sound after months of laboring. It’s one of the harder consonants to teach because of the pulled-back position of the tongue, Barb told us. When Carly found she could no longer replicate it, Barb was crushed. I came home once to find Barb, Ma
ri, and Tammy in our family room, Carly lying on the couch with her head hanging back off the edge. As Tammy steadied Carly’s body, Barb supported her head and attempted to use gravity to drop Carly’s mouth into position to make the elusive sound, but to no avail. Barb shot me a look, a rapid raising of both eyebrows, as if to say, “Well, we tried.” Barb was a cross between educator and the Army’s Corps of Engineers; she never showed her frustration.

  When Carly was four—just as she was entering the world of ABA—we began to witness her exile from the community of her “neurotypical” peers. Taryn attended a neighborhood nursery school and we became friends with a family up the street. They, too, had twin girls, and despite Carly’s obvious lack of ability to connect, the Millses always included Carly in any plans they made with Taryn and their daughters, Sydney and Katherine. Carly seemed to have a connection with the girls’ father in particular. A family doctor, Tony was calm and matter-of-fact. He seemed to look right past Carly’s oddness and see something much deeper. In return, he was one of the only people other than Tammy, Mari, or me who could hold Carly without making her cry. She loved his unruly beard and metal-framed glasses.

  After school, the three girls often went back to Lauren and Tony’s, and Tammy would bring Carly over to join them. Their neighbor, Kathy, had a daughter who also attended the preschool, and was another fixture of these chaotic play groups. The mothers all got along well and it created a welcome community for Tammy, who spent so much of her time pulled into the vortex of Carly’s doctors’ appointments. But one morning, nearly a year after this ritual began, we were reminded that Carly was seen more as a visitor than as a member of the community. Kathy was planning a birthday party for her daughter. The invitation arrived addressed to Taryn. Not Carly and Taryn, just Taryn. Who invites just one twin to a party? At first Tammy tried to rationalize that maybe it was a space thing. But given the size of the family’s home and the fact that it was to be an outdoor party, she quickly faced the truth.

  The family’s niece had been living with them while she finished a college course and often babysat for Carly; we were sure they were keenly aware of the challenges we lived with. A line was being drawn, one we would see over and over in the years to come. Our “normal” four-year-old would be included, and our disabled four-year-old would not. This little piggy gets roast beef, and this little piggy gets none. Uncharacteristically, Tammy bit her lip and sent Taryn to the party.

  Slights were not uncommon. Sometime later that summer, another mutual friend of Lauren’s and Tammy’s was planning a party for her daughter. The Weavers lived several streets away and Mari’s sister worked as a nanny for their children. In fact, Mari would often walk Carly and Taryn over in their strollers so the girls could play together. When the invitation for their daughter’s party arrived, again without Carly’s name on it, it stung like a hard slap on a cold cheek. Tammy, not prone to tears, phoned Lauren and sobbed.

  Ten minutes after Tammy got off the phone with Lauren, the mother phoned to apologize and include Carly. Lauren had clearly set her straight. In the end, Carly attended (with help from Mari), and she did great. I generally noticed that the kids were more accepting of Carly’s uniqueness than the parents.

  Had Carly and Taryn not been twins, the double standard of their treatment by friends and members of our community would have been less obvious. But as it was, we had a constant reminder of the normal childhood Carly was missing out on. We were forever attempting to integrate Carly into Taryn’s world; the one with mainstream schools and activities, friends and parties, dance, swimming and art classes. Carly’s world was one of doctors and therapists. That was not a place for Taryn.

  So when it came time to invite Taryn’s school friends to her birthday parties (wasn’t it their birthday parties?), were we to put Carly’s name on the invitation? We decided that the only way for people to see the girls as equals was to treat them as such. While they may not share a social network, they did share a birthday. They both deserved the same respect. It worked in some cases; thoughtful moms sent a card and gift to a girl they’d never met just because she was Taryn’s sister. Others, clueless of the hurt they would cause, chose to ignore Carly’s existence.

  We couldn’t tell whether Carly felt the strangling loneliness that came from being left out. With her lack of telltale emotions, it was easy to assume she didn’t know the difference between being included and not. There was some relief in the delusion that she didn’t understand the sights and sounds swirling around her. But Tammy and I always felt as if we were being shunned by a clique. Getting Carly to blend in and be accepted would be impossible. Winning a popularity contest was never the goal; merely having a friend would be a relief. Carly’s being shunned was a painful reminder of our child’s difference. If she was not included in a five-year-old’s birthday party, would she ever be accepted anywhere?

  Excerpt from Northland Educational Centre, June 1999:

  CLASSROOM REPORT

  Carly is beginning to show an interest in symbolic play, particularly in the Daily Living Center . . . Carly is able to identify five body parts and she enjoys the shape sorter and puzzles when encouraged to do so. We continue to work on increasing Carly’s attention span.

  Carly continues to use a combination of communication systems in order to have her needs met. These include sign, gestures, sounds and photos. A recent addition to her verbal approximations is the “s” sound, which she has used to request “chips” and, in a different context, “swing.” She has been observed to combine “words” by signing “more” and saying “s” to request “more chips.”

  Carly enjoys gross motor play such as running, jumping and climbing on playground equipment. She is propelling herself well on a riding toy and now able to turn corners . . . she has been practicing throwing and catching games. Carly has also been working on “turning” activities and has shown good wrist movement when turning objects such as jar lids.

  Matching, sorting and copying are all important goals for Carly. She is now able to sort two colors, match identical objects as well as pictures to objects she is motivated by.

  Carly has learned to independently remove her shoes and socks and shirt if they are loose. She is working on independently putting on her socks. She drinks from a cup with no spillage. Next year we will introduce such fasteners as zippers, snaps and buttons . . .

  After two years at Northland, just past Carly’s fourth birthday, she began to outgrow the services that the school provided. And even the reduced fees outgrew our credit line. We moved on to the public school system’s watered-down services for special-needs education. There were suitable placements for a child with more common disabilities. However, for a child like Carly with a mixed bag of behavioral and what we presumed were intellectual deficits, there was no perfect fit. The philosophy of the public education system in our area was to offer “good enough” for as many as possible. It’s what our friend and lawyer Martha Ellison once called “equality with a vengeance.” Provide a bit to everyone, but not enough for anyone.

  Even though we were prepared to send our ABA therapists into the classroom at our expense, the rules of the school board forbade outside staff from working in the classroom. In one of the neighborhood schools, however, the principal was prepared to be flexible and admit a worker with Carly. Then, partway through the year, we were called to a meeting. The teacher stood in front of us with a written statement.

  “Your daughter does not seem to like me or the environment of our classroom,” she read from her script. Her hand shook slightly as she spoke, and she avoided our stunned gaze. She was a fastidious woman who kept her classroom tidy and efficient, and Carly’s needs were anything but efficient. The principal and school board administrators looked on in sycophantic sympathy.

  “Doesn’t like you?” I interrupted, incredulously. “She’s autistic, for God’s sake. She doesn’t ‘like’ anyone.”

  “I just don’t think I can do this,” the teacher responded.

>   As far as we could tell, the teacher had made no effort to learn about autism or our daughter’s needs. Nor was she required to actually teach Carly, since we had provided a trained ABA therapist to run all programming for the half-day sessions. In fact, Carly wasn’t even in the classroom very much because her therapist withdrew her to a private work space in the hall when she needed quiet and greater focus. But it was clear the battle was already lost. Carly was asked to leave the school by the end of winter break.

  We were told that there were more appropriate schools for Carly to attend, though a tour with the director of special education made it clear that there weren’t. There were specialized schools for the deaf, the blind, the medically fragile. There were schools for the developmentally handicapped. The administrators stonewalled and bullied Tammy to visit a school nearly an hour east of Toronto that they promised “is perfect for Carly.”

  “It is not perfect,” Tammy said. “Carly cannot sit on a bus for two hours a day. What if she has to go to the bathroom? She can’t tell anyone. What happens in the winter when at the slightest dusting of snow the bus service is canceled? Who will come to the house to help us? We moved into this neighborhood so that Carly could put on her knapsack and walk to school like all the other kids.”

  Tammy was resolute. Just because we were made an offer did not mean we had to accept it. While the school board would attempt to make us feel grateful for their largesse, we, too, could dig in our heels. Through our sheer stubbornness borne from a lack of reasonable options, Carly remained in the local public school for the next few years. However, when a new principal arrived, it became all too clear that the improvised program we were running was no longer acceptable. Either Carly would have to be assigned to another school with a developmentally handicapped classroom or we would have to make our own arrangements to educate her.