Carly’s Voice (13 page)

“We’re good at getting stuff done for Carly,” Tammy reminded me. “But we are
not
therapists.”

During the whirly years of her childhood, the only time Carly was calm was on long
walks to the park. When she was constrained by her stroller or a swing, I had a sense
of peace; it was as close to a normal father-daughter experience as I could get. Taryn
preferred to run all the way to the park. Carly, on the other hand, would melt down
into a tantrum if we didn’t use the stroller. We began calling her the Countess von
Carly because she wanted to be pushed in her carriage, even when she was six years
old. Eventually, we bought an oversized stroller for children with physical disabilities
rather than fight.

Flying through the air, snugly squeezed into a safety swing designed for children
half her age, Carly seemed to find a serenity she couldn’t find on the ground. The
motion and the wind in her face seemed to provide a sensory relief we could not replicate
elsewhere. She could swing for hours, her eyes closed, hands over her ears, and making
a humming sound through her closed lips.
Brrrr, brrrr, brrrrr. Mmm. Mmm.
As I watched the other kids play, my mind drifted. What if I could just take a gram
of Taryn and inject it into Carly? I dreamt of what it might be like to have twins
who were both normal. Maybe Carly was dreaming the same thing.

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 bureaucracy,
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.