Carly’s Voice (14 page)

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.

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.

Our resolve had worn thin. Nights were still sleepless. Days chaotic. Even something
as simple as an evening out was becoming impossible. Maintaining a cadre of well-trained,
capable staff for weekend support was a full-time job and an enormous expense. Despite
the unsettling experience with Caring Friends, we began exploring respite options
again.

Through a friend of Tammy’s, we met a young woman who worked for an organization called
Riverside Autism Services. Riverside focused mainly on the needs of adults with autism,
but they also dabbled in some youth support. Zoe was one of their regional
managers and despite her bulging caseload, she agreed to meet with us at our house
one evening. We discussed how we needed a break from Carly, but our breaks had often
backfired, causing more heartache than comfort. I was humbled by Zoe’s willingness
to voluntarily tangle with the autism monster. At 8:00 p.m., her day was going on
twelve hours and she still had a forty-five-minute commute home after our meeting.

“It’s fine,” she reassured me when I apologized a second time for the late hour. “I
meet with most of my families at night.” I saw no weariness in her explanation, only
optimism and fortitude.

We explained our trepidation of any type of group facility. “Carly really needs one-on-one
supervision,” we told Zoe. “She’s a flight risk. And if she’s not engaged, she will
either sit and rock, or get into trouble.”

“There
are
options,” she reassured us. “It’s true, most of the clients we support are older.
But I’m sure we can come up with a solution.”

Several weeks later, Zoe phoned to say she had found a suitable respite program for
Carly. One of the residential facilities Riverside ran was a home about twenty minutes
from ours. It was inhabited during the week by a young man. His workers had discovered
how much he enjoyed being in the country and, in particular, on a farm. They had arranged
for him to spend several weekends a month north of Toronto, and thus the three-bedroom
house he lived in in the city would be empty.

“This will be perfect for Carly,” Zoe told us. At most, there might be one other child
in the home when Carly was there, but she’d have her own room and plenty of supervision.
On some weekends, she would be the only one. It would be lonely, we thought, but at
least there would be no chance of her being overlooked.

“And because it’s part of a bigger regional program,” Zoe
continued, “they will include Carly in their outings and activities with other kids
and young adults. We have a van.”

Of course they did.

We girded ourselves for another exploration and headed out on a weekend morning to
visit the home. Although only several miles west of us, it was a different world.
The house was located in a once working-class neighborhood that now was home to the
unworking class. The area did not strike me as dangerous-looking, but it had a fatigue
I had come to associate with autism. The treeless lot was fenced in, and while there
were a few other houses just like it up and down the street, high-rise apartments
elbowed their way onto every block.

The man who regularly inhabited the home had autism and was blind. He lived unaware
of the darkness; the worn, mismatched furniture; the ceiling light over the laminated
kitchen table in the dining room hanging askance, one glass bulb-cover missing. Carly,
on the other hand, could see, and it saddened me to think of her being sent to such
a dreary place.

The day we visited, there was a teenage girl at the house for the weekend. “Her name
is Carla,” said Victoria, the woman managing the house. Tammy and I looked at each
other, our eyes like saucers at the coincidence.

When we went to see the bedroom where Carly would stay, Carla was sitting on her bed
rocking. She did not look up when we entered, made no acknowledgment of our arrival
in her personal space. Tammy gasped slightly. Although maybe sixteen years old, Carla
had the same lost look in her eyes that Carly wore so often. She was dressed in clean,
simple clothing selected more for the convenience of caregivers than for fashion.
Her light brown hair pulled back in a ponytail looked much the same as Carly’s. Too
much like Carly’s.

For a moment I felt as if I were peering through a portal to the future, and a cloud
of nausea passed over me. I looked at the young woman, trying to connect with her.
“Hi,” I said hopefully. “I have a daughter named Carly who may come to stay here once
in a while.”

Carla did not respond. She continued to stare at some other place, her eyes offering
no sign she’d heard me. I wondered if she had already given up trying to escape her
body and was resigned to this existence. She looked neither sad nor happy, just vacant,
the way I’ve seen gorillas look at the zoo. Her room was a nondescript bedroom—a room
with no signs that it actually belonged to anyone. Bare and soulless as a cheap motel
room. Maybe rock posters and body spray would have been a nice touch. What hope was
she being offered anyway? I wondered.

I asked Victoria about the girl’s wrists. They were oddly wrapped in gauze and elastic.
“She chews at them. We have to keep her wrists bandaged to protect them,” she said
with her strong, kind voice. There was no evidence of judgment or pity. It was a statement.
It was what this girl does. She rocks and chews.

Tammy stepped into the hall. She was crying now, soft sobs, her chin on her chest.
I looked away. This
cannot
be Carly. Not ever. I bit down on the inside of my lip. If she descended this far,
could we ever reach her?

Back downstairs, Victoria took Tammy’s arm with a compassion I found calming. Victoria
spoke with a strong Jamaican accent that lilted. “I know,” she said, looking directly
into Tammy’s eyes, as if answering an unasked question. “It’s gonna be awright.”

I had come to despise the residential facility workers who seemed
too
sweet. I didn’t trust them. I couldn’t help but feel they were putting on an act
for us, desperate parents, and that a darker side would emerge once our backs were
turned. I despised even more the cranky ones who no longer even bothered to hide their
disdain for the people they were hired to care for. Victoria, however, had a
sincerity that warmed even the shabbiness of the house and I caught my breath again.