Carly’s Voice (10 page)

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 takes 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.

As an alternative to the public school, Howard attempted a partnership with a small
Montessori school. Here he would take direction from the director and teacher and
try to create structure in Carly’s day in the less restricted environment. The school
had hoped that if it worked with Carly, they would start a program for other children
with autism the following year.

The venture withered after the first year, however, due to high costs and lack of
resources. To provide the level of specialized education required would have cost
parents nearly $60,000 per year. There weren’t many takers.

We were exhausting all options. After six years of ABA, Carly had mastered a number
of self-help skills, but her hyperactivity and verbal tics made her an educational
pariah. While my career was gaining momentum, our credit line was maxed out, making
attendance at one of the few private autism schools out of reach.

I could feel Tammy lying awake at night, her brain whirring through the meager options.
“It would be so much easier if Carly were
more
disabled,” she lamented. “If she were a little more blobby, at least we could contain
her.” What could I say in response? It was true. We had met families with children
living with a full spectrum of challenges and, ironically, the ones with physically
depleting disabilities had a place in the system. We were rejected like a transplanted
organ.

A kid’s ’tween years should be filled with excitement and discovery. Taryn was experimenting
with dance and drama, soccer and overnight camp. But Carly’s childhood felt like a
slog through mud. It was hard to rejoice in her newfound abilities to sort letters
and spell a few simple words or to take turns playing a game of checkers when minutes
later she would spontaneously fling herself to the floor and bang her head or compulsively
dump plates of food and glasses of juice.

With no public school options, we improvised our own school. Our basement family room,
which had long served as both Tammy’s office and space for Carly’s ABA, became a one-room
schoolhouse. Howard, Barb, and whichever ABA provider we were using at the time strung
together hours of activities and programming to keep Carly busy. She wasn’t getting
a diet of academics, but her mind would have to wait for her body to catch up. To
our list of responsibilities—parent, manager, advocate, therapist, and prison warden—we
could now add schoolmaster. As Carly got bigger, it seemed our world got smaller.

Even now, with the worst of it behind us, I have a sense of foreboding at bedtime.
Through most of her childhood, Carly’s constant movement and inability to settle tormented
her sleep and ours. She would struggle to fall asleep at a reasonable hour and to
stay asleep for more than four. All parents go through sleepless nights with their
infants, but by forty I had hoped to be past this phase of my life.

One night, around eleven, when Carly was little, Tammy and I were in bed, as usual.
Tammy can only fall asleep with the television on, so we’d watch Jon Stewart ridicule
George Bush, or a news show on CNN—a group of guys I call the Screamers because they
yell over one another to the point of childishness. Tammy, however, is a news junkie
and follows the commentators and the politicians that they rip apart like most guys
follow sports. But to me they look like old gray men raging against the system, and
I can’t understand how it relaxes her.

When I finally drifted off, I did so with one ear open as always, because I knew my
night was just beginning. Sure enough, just after two in the morning Carly burst from
her room and jolted me back into a hazy reality. She ran—Carly never walks, never
moves peacefully—into the hall and bounded into our room. Each step was a heavy stomp,
her hands slapping at her sides. But her fiery energy packed a mean punch. She didn’t
cry so much as bleat, a sound that immediately raised my blood pressure. What few
words she had been able to form at three or four years old were long gone, replaced
only with gestures and guttural noises. Perhaps forming words was more effort than
it was worth, since gesturing, grabbing, and whining often produced quicker results.
We despaired of ever actually hearing Carly’s voice. The effort required for her to
utter even the simple nouns she once learned far outweighed the benefit to her; it
was quicker and easier to point to what she wanted or use the binders filled with
picture symbols of things other people’s mouths could prattle off without thought.
Or perhaps as she developed, pathways in her brain—the complex network of neurons
that told her mouth what to say—crisscrossed into a tangled mess, leaving her speechless.

She stood in the darkened room at the foot of our bed, stripped naked, and jumped
up and down. She made the yelling and howling sounds that were her only form of verbal
communication. I pulled myself heavily from my bed. “I guess it’s my turn,” I said
sarcastically to my wife. She had learned that if she stayed in bed long enough, I
would be the first to get up. This tactic left me with a double dose of resentment.
I am not kind when I’m tired and aggravated. The sense of humor I often use to defuse
a situation deserts me and is replaced with petulance. “It’s
always
my turn,” I throw in under my breath.

I shepherded Carly from our room and back to the sea of destruction that faced me
in hers. Compelled by some unstoppable,
inexplicable force, Carly had pulled the sheets, pillows, and blankets from her bed
and emptied all the contents of her dresser onto the floor. She was now on her bare
mattress jumping and flopping about as if possessed. “Oh, Carly,” I said. I felt the
creep of desperation in my stomach. This was not a new scene for me; it was one that
played out over and over—almost every night. Carly’s behavior was inexplicable, and
without language, a mystery.

I put the sheets and quilt back on her bed and plumped up the pillows. It looked inviting
to me, anyway. “Carly, get back in bed,” I told her, a bit roughly. Although she complied,
I knew this was the beginning of the day, not the end of a momentary disruption of
the night. She flopped around on the bed as I sat on the edge trying to soothe her.
“Shhhh,” I said, or was it a command at this point? I lay next to her, hoping to project
an infectious calm.

“Think of something peaceful,” I suggested. “The ocean, for example. A walk on the
beach.” For me, visualization has always been a powerful ally. It’s hard to know if
Carly understood this technique. I tried not to talk down to her. An attempt at soothing
her to sleep felt futile; hadn’t I tried every trick I knew a hundred times before?

As the fit subsided, I viewed the carnage of clothing strewn around the room. “You
must make her clean up all of her messes,” the therapists had told us. “It’s the only
way to discourage her from doing it.” I think they called it an “aversive”—a kind
word for “negative reinforcement.” In this case, cleaning up was designed to be a
consequence of her action, to discourage her from making a mess next time. But making
Carly do anything she doesn’t want to do is a major struggle. For whom is the task
really an “aversive,” then?

“Piss off,” I said to no one in particular; it seemed like the right sentiment. I
was woozy with exhaustion. Not just a physical tiredness, but the type that comes
from tedium, frustration, and anger. I usually can move beyond anger with some sort
of catharsis, like provoking an argument or slamming a door, but this seemed like
an
inextinguishable fury. The only force keeping me moving forward was inertia—what choice
did I have?—and a desire for normalcy. Though my life often felt like I was bailing
water from a foundering vessel with a teacup, I believed that if I was determined
enough, consistent enough, patient enough—I could bring order to chaos.

I lay next to Carly as she drifted off only to be startled back to wakefulness with
a twitching spasm. So we lay this way as the rest of the household slept. We had purchased
a clock radio that played a series of Zen-like nature sounds. I stared up at the ceiling,
and listened to the track trying to determine when one cycle of chirping birds and
bullfrogs ended and the next one began. It was like counting stars. Something mindless
I could do at two-thirty in the morning when I should be sleeping. Carly was finally
quiet, though not sleeping, so I headed back to my own bed.

On a good night, I might have fallen back to sleep and cobbled together something
that resembled a sufficient amount of rest to function the next day. But this night
was not a good night. I was jolted again by a crash in the kitchen. I ran downstairs
to find Carly standing on a chair in front of a food cupboard. Boxes of crackers and
pasta, cans of soup and stewed tomatoes lay around her on the floor.

“God damn it, Carly.” The rush of emotion electrified my body. “Stop it. Just fucking
stop it. I’m exhausted. If you want to live in this house, you need to get control
of yourself,” I snapped. I had slipped into the bleak place exhaustion and frustration
sent me. But I didn’t feel better after making these hurtful threats; I felt worse
and worried that one day the threats may not be empty. This was not a sustainable
existence, every night and every day, chasing Carly around the house, putting our
things back together just in time for her to rip them apart again.

Several months before, Carly had snuck upstairs and filled the bath. We were unaware
of what she was up to until we heard the
flood of water pouring through the ceiling lights on the floor above. Another time,
she smeared peanut butter on the den walls and furniture. While we cleaned up after
her attack on the den, she grabbed a full container of baby powder and dumped it over
the second-floor railing onto the carpeted stairs below. By the time Carly was seven,
her uncontrollable movements and urges had taken on an untamed, destructive quality.
Carly’s actions were not mischief that we would laugh about when she was older, such
as the time Taryn gave one side of her head a haircut. It was like living with a raccoon
in the house, and there were no signs of her growing out of it.