While Carly swung, Taryn ran off to the jungle gym, her long brown hair swinging from side to side. Other parents chased their kids, saying “I’m coming to get you! I’m coming to get you!” before grabbing their giggling children and swinging them into the air. Taryn loved it when I did that. When the three of us were together, however, I stood grounded behind Carly’s swing and could only watch Taryn play while I endlessly pushed Carly. There seemed to be no limits on how Carly’s Carlyness could drain resources away from her twin. I looked at Taryn, feeling as if my guilt were apparent to all. I would have loved to have the time and energy to run after her and play. Or to read with her or play a game after dinner without dozing off from lack of sleep. As I looked across the playground, I gritted my teeth. “It’s just so unfair,” I whispered to the wind caused by Carly’s swing. Taryn never seemed to mind, though, and was quick to strike up a friendship with the other kids scampering up the tubular yellow play structure.
Sometimes Taryn would go off on errands or do activities with Tammy and I would take Carly to the park by herself, another form of divide and conquer. Whether in a stroller, a swing, or through the bumpy road of her development, it seemed that pushing Carly was the only thing I did for the first ten years of her life.
Though Carly would never look up at me or acknowledge my existence, I spoke endlessly to her. I asked her questions I knew she could not answer, imagining how lonely it must feel to be among people and yet ignored. “How was your day, Carly? Should we go swimming this weekend, Carly? Would you like to go to the zoo, Science Center, the moon?” It didn’t really matter, I just couldn’t stand the silence. Brrrr. Brrrrr. Brrrrr. MMMMMM. The only thing worse than a one-way conversation is no conversation at all.
Like the wind, water lulled Carly to a temporary calm, making the bath an important daily ritual. Sometimes she would take several a day. Until Taryn was old enough to prefer showering, the two girls would share the oversized bathtub. Mari would supervise, helping Carly wash, and the sisters would giggle and splash one another. Taryn would swim to Carly and wrap her arms around her sister’s middle, making her laugh. We have a picture of Carly in the bath with Taryn at about three, looking like any other kid. But Taryn started losing interest in co-bathing when Carly started having accidents in the tub. “She’s making poo-berries in the bath,” Taryn said once, referring to the pellet-sized stools. With autism, even something as basic as evacuation can’t be typical.
As one year of ABA therapy faded into the next, Carly was undeniably making progress, as Dr. Marcotte’s report noted. Perhaps not at the rate or to the degree of miraculous transformation we had hoped for, but enough to know there was no going back. Sliding into debt, we girded ourselves for an uncertain timeline and an even more uncertain outcome. I had resigned myself to an expensive life. Raising Carly was like renovating a home: an endless money drain for things that are as essential as good plumbing and wiring, but of little aesthetic or pleasurable value. Carly was still a long way from fluidly living a life like other children, and her development was not remarkable. She could neither speak nor dress herself properly, nor display any real skills that would make her independent.
We had celebrated the girls’ birthday one year with an arts-and-crafts party. Tammy continued to seek a commonality between the twins and strove to satisfy the needs of two very differently abled kids with one event. Sitting at the activities table with a few other children, Carly spontaneously grabbed a large bead and strung it on a cord. “Wow! That’s amazing,” said one of our friends, truly excited to see Carly engage in the activities.
“That’s a two-hundred-fifty-thousand-dollar bead,” Tammy quipped dryly, referring to the amount of therapy required to get her this far. We were trying to celebrate the progress while keeping our more palpable sense of disappointment at bay. Our persistence was not so much out of enthusiasm as desperation: We really had no other options. Carly was mastering some basic academic skills—identifying objects by pointing with a closed fist when asked, correctly pointing to words or answers to simple math equations printed on flash cards when prompted by the teacher. Yet she was filled with a static electricity that kept her buzzing and moving in a noisy commotion that made a typical school classroom an impossibility.
As it became clear that Carly understood the concept of selecting items that she wanted, Howard and Barb moved on to an activity schedule. Barb wanted to give Carly the ability to express more complete thoughts and her ABA therapists wanted to be able to show her a visual schedule of events for the day and week. To help them, I needed to print out hundreds of comic strip–like illustrations—times of the day represented by a line-drawn clock, activities, toys, or food. When the guy at the Kinko’s down the street got to know me by name, I realized it was time to purchase my own laminating machine.
Every few weeks, I sat on the playroom floor in the basement—Carly’s in-home classroom. I printed and laminated dozens of little individual cards, each representing individual actions and themes that could be arranged in a sequence of events by the ABA therapists. I attached small pieces of Velcro to the back of each of the hundreds of squares. I created extra sets, as they seemed to get lost or damaged as quickly as I could assemble them.
In her room was a large board with a strip of Velcro on it. Howard could arrange the activities in order to show her what she needed to do. Get up. Use the toilet. Brush teeth. Take off pajamas. Pick out clothes. Put on underwear. Put on T-shirt. Put on sweatshirt. Put on pants. Put on socks. It’s a long list when you break down every part of your daily routine in nanoseconds.
We did this for every activity Carly needed to engage in—at home and in school. We taught Carly that as she completed one task, she was to remove the little card from the Velcro strip and put it in a box. When she completed a series of actions, she received a reward to reinforce positive behavior. Some families have little lines drawn on the backs of closet doors, marking the heights of their children as they grow. Many parents refuse to paint over the symbolic forward march of time. In our house, we still have a strip of Velcro on the back of the coat closet door with the sequence: breakfast, brush teeth, put on coat, wait for bus, free time. The last item seemed like a non sequitur, but I don’t question it. Nor do I question why after a decade, the cards are still stuck to the back of the door long after we’ve stopped using this system. It’s our version of nostalgia, I guess.
Carly became adroit at using this method, so I was constantly redoing cards and pages with increasingly sophisticated items. My job was to sort the little Velcroed cards into categories and put them in Ziploc bags for Howard, Barb, and the ABA therapists to work their magic. I got pretty good at it, but I never got promoted. I’m not even sure my boss appreciated me.
While I was just the line worker, Tammy processed the paperwork for the government so we could be reimbursed for some of the costs of running the full-scale production that was Carly’s life. Tammy also managed the HR component of hiring, shift scheduling, and procurement. We called this business of running Carly’s life Carly Inc. “The pay is lousy, but the benefits suck,” Tammy would say ironically.
Over her desk in the basement office, which she called “the dungeon,” hung a bumper sticker emblazoned with the quote “Well-behaved women seldom make history,” by Laurel Thatcher Ulrich (who herself looks remarkably well behaved). This humble office space, no more than a desk and a few basket-style filing drawers, was Carly Inc.’s official headquarters. An African proverb claims that “it takes a village to raise a child.” But we’ve found that it takes something far more entrepreneurial.
Tammy’s work space was the central nervous system of the doctors’ reports, schedules, invoices, forms, and paperwork required to keep Carly up and moving in the right direction. Although Tammy had the educational background, the smarts, and the drive to run a private company, her struggles with depression and the overwhelming chaos of Carly kept her at home. Here she was the manager of Carly’s world—a complex tangle of bur
eaucracy, dead ends, and uncharted territory in need of charting. And beyond helping Carly, Tammy—along with several other families who had become close friends—was successfully waging a battle to get the government to fund autism services in our province.
Some days I couldn’t see the value in all the menial work we did to keep Carly afloat. I understood the logic of it all, but from my experience, she didn’t use these tools to do much more than request juice or the bathroom. But I wasn’t with her all day and so I never really got to see what she was capable of. One evening I got home a bit early from work. It was already dark and cold, sometime leading up to winter break when Carly was about nine. She had been working hard with Howard all afternoon following a day in school, and she was knackered. Howard had planned on working her program through the dinner routine—requesting items on the table, rewarding her for proper behavior and communication. Carly, on the other hand, had different ideas.
Darting to the front hall, Carly pulled Howard’s leather jacket from the closet and dragged it to him. Tugging at his arm, she pulled him down to her and kissed his cheek and pushed him toward the front door. The three of us laughed.
“You want me to leave?” Howard asked in mock offense.
Carly went back to the closet and pulled out her dress coat, a long faux shearling that Tammy had bought for those times we brought Carly to nicer events like dinners out or synagogue. It still looked new from its infrequent use. Carly brought Tammy her purse and car keys and opened her communication book. Grasping Tammy’s arm with her left hand, she pointed to the icon for McDonald’s with her right, showing us she really was a kid like all others. Never before had I felt so enthusiastic about fast food.
As Carly began mastering the skill of pointing to pictures of items she wanted—a toy, a snack, a drink—Barb and Howard brought in a string of communication devices for her to try. A local agency supported by government funding had a program that leased equipment at a discount to parents. However, getting the equipment was no easy task, requiring evaluations, paperwork, and appointments that could never be scheduled at our convenience. Nevertheless, over the years, we did make use of the service happily. One such piece of equipment, called a DynaVox, was a small plastic unit with a touchscreen that produced page after page of programmable images.
“Carly picks it up very quickly.” Barb showed us the device. “She’s got I want orange juice and I want chips down pretty well.” She laughed. Barb and Howard never seemed to question whether Carly was capable—merely how to make the impossible possible. The device was temperamental and slow, but compared to sorting stacks of cards, it was rocket science.
In their early months together, Barb had taken on the role of teacher, Howard the student. Over time, Howard gained confidence and began developing programming ideas of his own. He had devised a communication bracelet to help Carly get what she needed when she was among those who didn’t know her well. Like a charm bracelet, but rather than mementos, Carly’s wrist was festooned with little metal tags engraved with words such as washroom, juice, or I need my communication book. (She had quickly learned to use the I want a break tag to escape from engaging in the demanding tasks she loathed.) Unlike some of the ABA therapists who spoke to Carly in artificially exuberant, childlike tones, Barb talked to her as if she were an equal—something Howard had picked up on immediately. As Carly matured, they engaged her in the process of learning. “What should we work on today, Carly?” Barb would ask as they began a session. It seemed Barb never doubted Carly’s determination and ability to grow. Tammy and I seldom got to experience Carly’s moments of growth. She saved these for school or sessions with Howard. We had to satisfy ourselves with the secondhand reports of Carly’s accomplishments as if watching it all through murky glass.
We would hold team meetings every few months to review Carly’s progress and adjust her program accordingly. The ten or twelve people required to keep Carly moving forward would crowd around our dining room table to debate what was working. Pressed shoulder to shoulder, we pored over the large blue binders of charts and lists documenting what tasks Carly was working on and debated her progress at mastering these skills. The process of taking and reviewing data was a fundamental component to ABA’s approach of helping our daughter become more socialized. Yet the scientific and clinical nature was at the same time dehumanizing.
The team sessions were long and exhausting. Words like antecedent, way-points, reinforcers, and data points flew around the room. I would lose track of the details, relying on the team leader to ensure they were documented and incorporated into Carly’s program. While I sometimes could not follow the minutiae of Carly’s ABA program, I could always count on Barb and Howard to come up with practical solutions of their own.
One afternoon after Barb’s session with Carly, Tammy commented that it was getting harder and harder to get Carly to eat without throwing a fit.
“Well, I know she can’t always have a choice at mealtime, but we need to find opportunities to let her make a decision about things. Take two pictures from the picture deck, like one of hamburgers and the other of spaghetti, and have her point to the one she prefers. Let her know there are only two options. You need to give her a chance to speak up.”
While at times it turned us into short-order cooks, giving Carly a say in matters—something she never had before—ended one of many battles waged every day.
Howard dutifully balanced the repetitive style of ABA with Barb’s more creative and intuitive approach. Carly formed a bond with Howard unlike any she had had with prior therapists. One night I came home a bit late from work to find Taryn, Carly, and Howard watching a movie and sharing a bowl of popcorn. Carly was slumped against Howard’s shoulder like his adoring sister.
While not exactly compliant with Howard, Carly seemed to listen. Though she seldom met anyone’s gaze head-on, Carly would turn her long-lashed doe eyes to Howard plaintively at times, and we felt she was trying to project her muted thoughts directly into his mind. Perhaps Carly responded to Howard differently because he was a guy, someone with a different approach or style. Or maybe it was because he was willing to brainstorm new approaches and not merely follow the ABA rules. Howard had an endless repertoire of activities to keep Carly physically active and engaged. Carly sensed in Howard someone who would never give up on her; someone who saw past the toileting accidents and outbursts, the screaming and destruction. Howard demanded more from Carly than anyone else. One afternoon I found him leading Carly down the sidewalk wearing in-line skates, a skill I never would have thought to teach my daughter. Carly’s sticklike legs were rigidly shuffling along the pavement as she grasped Howard’s arm with both hands. She looked determined, if not amused.
The years approaching adolescence were formative for all of us. At times, our household felt like some grand social experiment more than it did a family. Space and time were filled with therapists, clipboards, charts, and paraphernalia. Taryn took it all in stride, seeming not to notice. She was figuring out who she was through her hobbies, school, and activities. She was easy to please, upbeat, and bubbly. As long as she had her friends around her and an activity to engage in, she beamed. Somehow in the shadow of autism, Taryn continued to bloom. Matthew was eager to help, sometimes going overboard with a label gun, making our house look like a giant tag sale. He looked up to Howard like a big brother, and I’d often find him helping Howard with tasks or emulating the clipped style in which therapists gave Carly direction. I could see the devotion to his sister, even when he was a young child.
After three or four years of ABA, it was evident that we would not have the same outcome as the family who had introduced us to it in the first place. The rewards were meager, and yet there were rewards. We persevered, propelled by Howard and Barb’s devotion and the data provided by therapists indicating small improvements. I came to think of us as a slow-grinding train. I couldn’t fathom our destination, but took solace in the belief that we were at least moving forward.
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sp; 7
A Sinking Feeling
Although Carly was learning, her insomnia and hyperactivity were worsening. She had taken to grabbing forks, knives, or other utensils and sharply hitting the edges of the marble counters in our kitchen. Even after we had them repaired, years later they still look as if they’ve been gnawed by gerbils. Stillness defied Carly’s personal law of nature. We had not reentered the terrifying waters of respite care since she was five, but with our nerves frayed, we were ready to jump overboard again. That we hadn’t killed one another in the ensuing months after our last respite experience was testament to the endurance of the human spirit.
Carly was now toilet trained, attending a public school program with an aide, and receiving intensive ABA therapy every afternoon and on weekends. But getting her to this point—the logistics and planning, the cajoling of school boards and staff, and struggling to finance Carly’s complex life—sucked all our spirit. With my work schedule, I was of little assistance except at night and on weekends, so most of the role of managing Carly’s life fell to Tammy.
We had no breaks from the mayhem that ruled our house other than occasional weekend day programs, our nanny, or an iron-willed babysitter. One evening Tammy and I went to a farewell party for a colleague at a small restaurant downtown. A friend of Tammy’s who lived down the street had a teenage daughter named Samantha who was more grown-up than most of the adults we knew, so when she offered to babysit for a few hours, we took her up on it. We had gotten Carly ready for bed and hoped all Samantha would have to do was read to her and tuck her in. Taryn and Matthew could help out—or at least take care of themselves.
At about 9:30 that night I glanced at my cell and noticed I had missed six phone calls from the house and one from a number I didn’t recognize. The party had been so noisy that I hadn’t heard the ringer. When I finally picked up, it was Samantha’s mother—and she didn’t sound very happy. It seemed that Carly had been out of control and Samantha had been trying to reach us for over an hour. When she didn’t get through, she had called her mother in for backup. Carly had pooped in her bed, and the teen wasn’t sure what to do. I guess the other kids she babysat for didn’t use their beds as toilets. That was the last time she offered to babysit.
Carly’s Voice Page 9