Carly’s Voice (7 page)

Throughout the year, our house had been oddly peaceful. Matthew, who had never been
a particularly calm boy, adopted a mature and helpful nature. He took on the role
of big brother with enthusiasm. He would sit on the floor with both girls next to
him reading from one of his picture books. Taryn would look up at him hanging on his
every word; Carly stared off at images only she could see. Although he probably was
deprived of the type of attention a seven-year-old wants, Matthew never acted out.

“It’s just one more way we’re messing up our kids,” I joked to Tammy. “They’ll get
over it.”

We had spoken to him about Tammy’s cancer in the way we were advised. Mom is sick.
The medicine she’s taking will make her lose her hair and may make her tired. But
the doctors are making her well. That was the mantra we repeated, perhaps as much
to calm our fears as to calm his.

Our son was growing out of his short-temperedness and tantrums and turning into a
sweet boy. Tammy called him her Bo-Bo Head; his still-small body a life support system
to his robust cranium. Matthew’s childish chubby cheeks were beginning to thin, but
when he smiled they still rose into pinchable wedges at either side of his mouth.
Somehow this horrible disease brought out a kindness that would become a permanent
characteristic in our son.

The girls, just months past their second birthday, were too young to feel the shifting
sands beneath them. Could Carly even grasp the situation? Her medical reports continued
to describe her as cognitively and developmentally delayed. Though we tried to maintain
similar schedules and activities for the girls, their differences were marked. Taryn
walked and chattered with a permanent smile on
her face. Her short dark hair clung to her head like a swimming cap. Carly, on the
other hand, seldom laughed—unless being tickled, bounced, or bathed.

I have a black-and-white photo I took of the three kids that summer. Taryn is standing,
grasping the side of a chaise lounge on our patio. She looks directly at the camera
with a grin so wide her eyes nearly squeeze shut. Carly sits on the ground beside
her, her legs splayed out for balance. Both of them wearing summer dresses of crinkly
cotton. Carly’s dress poufs out about her like a dollop of whipped cream. She looks
toward the sky, her mouth turned down in a pensive frown, but her eyes wide as if
contemplating the firmament. Matthew, the big brother, stands arm crossed, leaning
on the chair looking protectively down at his little sisters. This picture aptly summed
them up. A son feeling the need to guard. One daughter growing into a fun-loving,
playful ham, and another drifting skyward, away from us.

As the months passed after Tammy’s last treatment in August of 1997, we didn’t see
her remission as the closing of a book. In the years to come, the constant monitoring
would remind us that every day free of cancer meant no more than that. One more day
that it hadn’t resurfaced. Now every night-sweat, unusual bruise, persistent cough,
or swollen gland sent Tammy into a fearful spin, only calming slightly with the reassurance
of her doctor that she was still in remission. Milestone dates were looked at not
as accomplishments, but as sand trickling through the hourglass. The form of lymphoma
Tammy had, we were reminded, was treatable, not curable.

Nevertheless, with chemo behind her, Tammy began clearing out the artifacts of that
surreal year. The wigs and books on cancer survival were donated. Supplements and
pill bottles were thrown away. She kept the card with a quote from Zora Neale Hurston,
“There are years that ask questions and years that answer.” I’m not sure which this
one was, but as long as the two sides cancel out in the end, we’re doing fine. Lastly,
Tammy unpinned the little bag of lentils hanging on her bulletin board. But rather
than throwing them away, she placed them in her desk drawer.

When Carly was three and a half, we were waiting in a clinical ward at the Hospital
for Sick Children. Carly was a part of a drug trial for secretin, a hormone that researchers
briefly thought might be beneficial to children afflicted by autism. Tammy struck
up a conversation with a mother whose six-year-old son was sitting on the edge of
the hospital bed, playing with his Game Boy. There was a fairly typical cadence to
conversations among parents with children living with autism.

“Is your son . . . ?” Tammy started.

“Yeah. Autism. Your daughter?” the woman responded with a tired smile.

“Same.”

“Who’s your doctor?”

“Stephensen. Yours?” asked Tammy.

“Constantarios.”

“What are you doing for him?”

“Gluten- and casein-free diet. Occupational therapy. Behavioral therapy. Communication
therapy. How about you?”

“Same. Diet thing doesn’t seem to do much, though. We’re starting to explore medications
like risperidone. How do you pay for everything?” There is an unspoken code among
autism families that makes all topics of conversation fair game.

“Debt. My husband’s family kicks in somewhat. How do you guys cope?”

“Bourbon,” joked Tammy. And then, “Kidding,” just in case.

Carly was to have a sleep-deprived MRI as part of the secretin study. The boy was
in for an appointment with the doctor running the study. But Tammy and I were startled.

“Your son
really
has autism?” Tammy asked, now focusing on the child. The boy sat quietly playing
with his Game Boy while his mother chatted with us. He made no odd noises, did not
spontaneously get up and jump around flapping his hands. On occasion he’d look up
at his mother and then go back to his game. If there is such a thing as normal, this
boy portrayed it.

Diagnosed with autism at the age of two, the woman told us, her son had been undergoing
a form of behavior therapy called applied behavior analysis, or ABA. He had made such
incredible progress that his behaviors were largely under control. So much so, in
fact, that she kept his diagnosis from family members and even her son’s second-grade
teacher so that he wouldn’t be labeled. I was struck by the fact that this family
had the option of keeping their son’s autism to themselves. I was not embarrassed
by my daughter’s diagnosis, but there was no hiding her unusual characteristics. Tammy
had once filmed a video to show the doctors how Carly behaved at home. The small cassette
was euphemistically labeled “Kooky Carly.” It shows Carly tearing around the house
like an overwound toy, unable to stop. Chaos swirled around her like dust around Pig-Pen
from the
Peanuts
cartoons as she darted from room to room, jumping up and down, flinging herself on
furniture and the floor while bleating and whining. Discretion was not an option for
us.

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.