Carly’s Voice (21 page)

Nights continued to be the black hole of desperation. While on occasion Carly might
sleep peacefully for six or seven hours, we could pretty much rest assured that we
could never rest assured. None of her doctors had found a solution to her insomnia
and agitation. On average we were getting about three hours of uninterrupted sleep
at a time. I’m still amazed that Tammy and I weren’t perpetually sick.

Rebecca, a friend with twin teenage boys with autism, suggested we look into a more
stable solution. One of her sons was on the more severe end of the spectrum. At over
six feet tall and weighing 185 pounds with an occasionally aggressive temperament,
he was too much for the family to cope with full-time. Rebecca had already moved past
the phase of grief and mourning and come to accept the fact that her son must leave
home. Now a young man, he lived
at a residential program run by Cedarview Institute for part of the week, and came
home the other days where he had a one-on-one worker who took him to a specialized
school for autism. They also had a nanny and an extended family who stepped in to
help both financially and, on occasion, physically.

At Rebecca’s suggestion, Tammy and I drove up to visit Cedarview. The girls were away
at their overnight summer camps—Carly at a camp for children with various physical
and developmental challenges—Matthew, then fifteen, was doing whatever it is that
teenage boys do. The residence was located in a small town off the provincial highway
that leads to what Torontonians call “cottage country”—a general term for hundreds
of miles of lakes and forests stretching from an hour north of Toronto up to the edges
of Georgian Bay and the Niagara Escarpment.

“How do Edward and Rebecca do it?” I asked Tammy as we drove for what seemed an eternity.
“Sending him up here . . .” I wasn’t criticizing; I was asking for permission.

“What choice do they have?”

The social worker who was coordinating our services suggested that we explore a routine
for Carly that would have her living at Cedarview from Thursday to Sunday and at home
the rest of the week. They had staff on duty twenty-four hours a day, seven days a
week, which suited Carly’s perpetual motion. The plan sounded good on paper, anyway.
We would send therapists to Cedarview, in shifts, for about ten hours a day to supplement
the residential staff. In short, we were creating a school and behavior program that
would help Carly get academics
and
learn to better manage in the nonautistic world. When at home, she would work with
Howard, Barb, and our ABA team.

Friends and family tried to encourage us for taking constructive measures. Placing
Carly at Cedarview was never intended as a permanent solution to the permanent question
that was her life. But
it was something that could be done for a period while we thought through her young
adult years. And possibly, just possibly, she would mature into a calmness that would
allow her to live at home?

I felt that creeping sense of loss as we drove along the two-lane highway that snaked
through the flat farm country north of Toronto. The road narrowed and we passed through
small villages with century-old churches, farmhouses, and disused cemeteries where
the town’s founders were laid at rest. For many Torontonians, this route was a gateway
to happy family weekends at the cottage. For me it felt more like the Odyssey.

We drove silently as I turned off the highway onto the rural route leading to Cedarview.
We saw the brick house rising up before us. My pulse quickened and my throat tightened.
I focused on the pinging noise of the pebbles popping up under my car and the dust
wafting across the road. I could still change my mind, I thought. And go back to,
what? I parked near the front door and got out.

The way a prospective house buyer sizes up a piece of property as he enters, I did
the 360 look before climbing the steps to the covered porch. There were fields stretching
out behind the main house, a large well-tended barn, a few gardens drying in the summer
sun. What did I expect to see, a warning sign telling me to turn back before it was
too late?

We passed through the worn screen door into the foyer where we were met by the executive
director and a senior staff member. I glanced around the entrance hall, lined with
cubbies for the residents’ jackets, shoes, and outerwear. Each person had a hook and
a basket, but it was hodgepodge of miscellaneous items, and I thought about how Tammy
and Mari worked so hard to keep each of our children’s clothes neatly stored in their
closets and drawers. It’s odd, the details that stick in my mind. Things of such little
consequence at times of such great ones.

The director was very cheerful and clearly proud of his facility.
We had been told by the government agency that was managing Carly’s file that he had
an excellent reputation and ran a squeaky-clean program. I’ll be the judge, I thought.
I am suspicious from the start, though cynicism is something I can ill afford.

The tour of the facility, however, was impressive. Although it was shabby by the standards
of a private home, I could not deny the house looked well run. It was clean, spacious,
and sufficiently appointed for the six or seven kids who lived there on either a full-
or part-time basis. We were shown the room that Carly would use and were assured that
although she would be staying in it only three nights a week, no one else would use
it when she was not there. We were encouraged to bring our own furniture and decorations
to make it feel homey. However, the house manager reminded us, we would need to use
the plastic-covered mattress they provided and meet other standards of the safety
codes they followed. It was a further reminder that this is not a home; it is an institution.

Our tour concluded with a walk through the barn and the gardens that surrounded the
home. A young man was weeding in the garden. “That’s Greg,” the director told us.
“He loves weeding and gardening, and he earns an allowance to do it. He’s saving up
to buy a little refrigerator for his room.” Greg looked up and gave us a widemouthed
smile as if to say, “Isn’t that cool?”

There was one other girl who lived in the house; she was a few years older than Carly
and also nonverbal. From the description of the other residents, I quickly surmised
that none of them received the same degree of therapeutic intervention that Carly
got. The kids were placed at Cedarview because of their need for one-on-one supervision
and their families’ diminished strength. This place was their only option for survival.
We were no better or worse, but that was little comfort.

We went back into the house and sat at the large island in the well-appointed kitchen.
Big wooden cupboards and long counters stacked
with cookware lined the walls. An enormous industrial refrigerator hummed. All things
considered, I liked the room because it was unlike the sterile kitchens I’d seen in
other residential facilities. Two young women in shorts and oversized shirts were
preparing lunch. “It’s a bit quieter here on weekends in the summer,” the director
told us. “Some kids go to camp or are away with their families.”

“When she’s here, will she be lonely?” I braced myself so my voice wouldn’t crack.
Seclusion is one of the things I feared most for my daughter. She was already so isolated.
Unable to speak, unable to connect.

“We keep the kids busy,” one of the young women offered up. “We take them swimming
or into town and out for walks.”

I heard the buzzing of a fly and looked out the window across the gardens at the fields
below. There were a few cows grazing alongside an ostrich. It was a bizarre sight,
but I’m used to weird by now. I wonder if Carly can be happy here, in this strange
and unfamiliar place. Maybe the best I could hope for was a lack of unhappiness, I
thought.

Through the morning Tammy had been solid. She asked all the practical questions. Schedules,
pedigree of staff, work space for Carly’s ABA therapists, Internet access, quality
of food. She wound up a little bit as she attempted to explain the peculiar temperament
of our daughter, an excitability that had gotten worse over the years.

I glanced into the next room where an unusually tall young man of about seventeen
sat at a large table used for crafts and games. He sat with a mountain of crayons,
picking one up at a time and breaking it in half and throwing it back on the enormous
pile. All the while he made squawking sounds that went from being jarring to annoying.
Tammy had no need to worry that our daughter would be out of place here.

“How do you manage the meds?” Tammy asked, concerned about accurately dosing the increasingly
complicated buffet of Carly’s medication.

We were shown a large, locked cupboard on the sidewall of the kitchen. It was designed
to house cans of tomato sauce and tuna, but was now a vault of mood stabilizers, antiseizure
medications, and antidepressants that were often used for people living with autism.
Each resident’s prescriptions were labeled and stored in their own individual boxes.
“The shift supervisor dispenses the medicine,” we were told. Confusion and overdosing
was a constant fear of ours when anyone other than Tammy or me administered Carly’s
pills.

The tour and grilling complete, we agreed to a trial period. The director was pleased—glowing,
really. He tried to give us the sense that life at Cedarview was like life at a resort
or on a cruise ship. Happy, happy, happy. Activities, great supervision, excellent
food, and fresh air. What else could anyone want for their child? My hackles went
up again.

We knew a few people whose kids stayed at Cedarview. It would provide nighttime supervision
and accommodate the daytime ABA therapy. The building felt more like a home than most
facilities. With this meager rationalization, I agreed to the plan.

Tammy and I drove back to Toronto, somewhat relieved. We had been looking for a solution
to our pending crisis. Fall was coming, and with it would come the unanswerable question:
What should we do with Carly for school and staff support? It was only July, and we
had a plan in place, so we allowed ourselves a sigh of relief.

I was once told that a block of wood is only a block of wood if you want it to be.
So make it something else.

—Carly

The house was peaceful and even-keeled for the four days a week that Carly was at
Cedarview. Life took on an eerie calm and flow. Homework, lessons, outings, and friends
stopping by. It all seemed so sane.

Inevitably I would walk into Carly’s room to put something away, however, and the
image of her empty bed, her possessions neatly in place, even just the smell of her
body lotion, would halt me in my tracks. It reminded me of the shrine that parents
of lost children maintain years after their child’s death.

Yet, for the next two and a half years, life entered a period of relative stability.
Tammy’s cancer was in remission; Taryn and Matthew were doing well at school; john
st., the ad agency my partners and I started in 2001, was gaining momentum; and Carly
had a routine. On Wednesday or Thursday afternoons Howard would drive Carly up to
Cedarview and on Sundays the staff would drive
her partway back to a rest stop on the highway where I would meet them. In all of
the time she was there, I only went to Cedarview four or five times. By not actually
making the drive up, I could imagine myself to be an accomplice but not a felon—and
that felt a bit better.

There were now two other families we knew with children residing at Cedarview on a
part-time basis, and the fathers would wait together to meet the kids at the end of
the weekend. Seeing my friends Edward and Ryan was a measure of consolation. Edward
is a world-renowned classical musician, and Ryan is a successful partner at one of
Canada’s largest law firms. I figured if guys of such standing could handle the outsourcing
of their children, then I should be able to suck it up, too. The logic was desperately
flawed, but I looked for any crevice to stick my toe into. On Sunday afternoons, as
the sunlight faded, we’d stand in front of the Tim Hortons drinking coffee and waiting
for the dusty van to pull up and dump its contents into our arms.

“How was the week, kids?” one of us would ask as their sons and my daughter tumbled
out. None of them spoke or spoke much, so we never got an answer. We’d get a proper
report by phone later from the staff.

It would have been nice to think the three of them were like peas in a pod, a little
tribe of autistic kids living together. The stuff of Disney movies and kids’ novels.
One boy was nine, the other sixteen, and Carly in between. But from what I could tell,
they barely acknowledged each other’s existence.

I imagined that Carly was forlorn, scared, and angry about her living situation, though
in the early months, she never commented to Barb or Howard about any of these feelings.
This was triage, and neither Tammy nor I wanted to probe too deeply into how Carly
might feel about this living arrangement, as there were no alternatives we could come
up with.