Carly’s Voice (34 page)

The families met regularly on our own to discuss who would provide training for the
house staff. We knew we’d probably have to fight with FH on this issue, as they were
accustomed to hiring, training, and maintaining all aspects of their facilities. But
they had never run a home exclusively for residents with autism. And with a combined
thirty-five years of experience in raising kids with the disorder, we were adamant
about having input into the program design.

Our meetings were about twenty percent business and eighty percent support group.
We rotated locations, but it seemed like Rebecca and Edward got an unfair share of
hosting responsibility.

A bottle or two of wine and sushi often accompanied our discussions, which drifted
from planning agendas to updates on the progress of our kids. My alcohol consumption
increased alarmingly during the months of planning. Alyssa’s mother and father would
join us as counsel on the issues of group facilities. Although not always productive
or well organized, our meetings allowed us to stay well-bonded as a team. Inevitably,
everyone would be assigned a task to focus on until our next love-in.

“I think we’ve found two options,” Dave said to me somewhat breathlessly one afternoon.
“There’s a large home downtown and one out in the eastern suburbs, in Scarborough.
Probably our best options.” We were looking for a needle in a haystack. We wanted
a house in a good neighborhood that was already licensed. The three families lived
somewhat centrally, and it was essential that any location not be in one of the eastern
or western suburbs of the city—generally where most of the group homes were located.
With traffic, getting to these towns took almost as long as getting up to Cedarview.
Carly had already attended respite programs in the far
eastern reaches of the city, and Tammy and I wanted to move forward, not back. Ryan
and Edward made the trek out to Scarborough one afternoon anyway, as they had boys
and felt that a suburban location might offer up more outdoor space for activities.

“Send me a postcard,” I told them.

On a chilly fall evening all six of us and representatives from FH met at the second
option, a house in Parkdale, a downtown neighborhood that’s been in the process of
gentrifying for about fifty years. This would be the meeting where we agreed to proceed
with one of the two facilities—or pass on both and hope we’d find something more uptown.

Dave warned us that if we passed up one of these two opportunities, he could not be
sure when or if another alternative would come along. It wasn’t exactly a threat,
but we knew that if we didn’t take one of the two imperfect homes, our dream could
be delayed by a year or even indefinitely.

My initial reaction to the downtown location was utter despondency. The house had
been used as a group home for many years, and the bruising and battering was evident.
It had the unmistakable air of neglect that characterizes publicly funded housing
facilities. Tired, worn, and institutional. Currently, there were three residents
who would be relocated within the coming months. I tried to look past the bare light
bulbs, broken shades on the windows, water-stained ceilings, and cracked walls. It
was a large home, enormous really.

In its day, Parkdale had been a grand neighborhood of large and imposing Victorian
mansions. Its being located only minutes from Lake Ontario and the parks that line
the shore, and a quick commute to the downtown core, made it an ideal affluent neighborhood.
But through the 1960s and 1970s, real estate zoning changes allowed the conversion
of many dwellings and apartments into halfway houses for those leaving drug and alcohol
rehab. The crime rate in the neighborhood was higher than in the rest of the city,
but as
one policeman I asked told me, “Mainly petty theft. Addicts looking for their next
hit.” Not comforting.

However, in recent years, due to the explosive real estate market in Toronto, many
neighborhoods had become unaffordable for young professionals and families. Thus,
houses like the one we were considering rubbed shoulders with renovated, well-maintained
Arts and Crafts and Victorian single-family dwellings. Even on the block on which
this house sat, it was not unusual to see a nanny pushing a small child in a stroller
down the street past gnarled men sitting in broken lawn chairs on the front stoop
of their tenement.

“Can you really see Carly living here?” Tammy whispered in my ear.

“I can’t see her living anywhere,” I replied, trying not to lose enthusiasm after
so many months of planning.

We huddled together on a few thrift-store couches in the basement, so as to stay out
of the way of the residents and staff upstairs. The parents sat quietly, avoiding
each other’s glances. We had hoped for more. We always do.

Rebecca, the eternal optimist, broke the ice. “I think it can be fab,” she said in
her ironic post-hippy slang. “It just needs work. And it’s only a few minutes to Carlton
and downtown. You know, we’re downtowners, so this kind of neighborhood doesn’t really
bother us.” In fact, it was only fifteen minutes from the Annex, where they lived,
but while it was close, it was light-years away. She looked up at her husband, hoping
for his nod of agreement. Edward continued to look at his feet. The rest of us could
only inhale and sigh.

“I gotta tell you,” said Dave, “we can let this one go and keep looking. But you’re
not going to find anything else in the city. Certainly nothing in a nicer neighborhood,”
he reminded us again. “Let’s at least take a look around.”

We’d come this far and, after looking for four months, we were beggars. We plodded
up the narrow, windy stairs, starting our
investigation on the third floor. It was a maze of jagged hallways and rooms, but
ample space for a few bedrooms and office space for the night staff. “Probably good
for the girls’ floor,” Dave said. At least, I thought, the girls would have their
own space away from the boys who were even more rough and tumble than Carly.

I closed my eyes for a moment to imagine my daughter sleeping here. Outside I could
hear the traffic of Queen Street, the main thoroughfare just north of the house. Only
feet away, through the thick, cracked brick walls, was a halfway house for old, drunk
men. From their second-floor porch, they could look down into the paved backyard of
what was to be Carly’s new house. My stomach churned and I wondered why we were always
in the predicament of making the best of a bad situation.

“We can try to get Karen to help us get the place renovated and decorated,” Tammy
added hopefully. She was referring to a friend who had a successful architectural
design company.

“A designer group home, with hookers and addicts as neighbors. Maybe they’ll come
for a barbecue this summer,” I replied sarcastically when Dave was out of earshot.
I knew I sounded like a snob, but I was having trouble feeling gratitude just yet.
Nevertheless, I forged on, resigned to making this work.

The rest of the tour revealed little to be excited about except the raw size of the
house. It was dark and lopsided, like the bowels of a whaling ship. A few broken and
stained (with what?) pieces of institutional furniture, bare floors, dripping faucets,
and broken toilets. But it was in Toronto, licensed, and ours for the asking. It wasn’t
perfect, but it was about as perfect as you get when you’re dealing with autism.

Dave agreed to keep looking for a few more weeks while we decided. He would also give
the agency that currently ran the house a provisional statement that we were interested,
just to get the paperwork going. We pretended we’d think it over, but we knew our
decision was made for us. The kids couldn’t stay at Cedarview another year while we
kept looking. We were all weary at the thought of another winter of commuting and
having our kids living in a different area code. Tammy and I were even more motivated;
although Luc and Anton seemed happy enough at the residential program, Carly was miserable.

“I don’t belong there,”
she said to us one night.

I felt my world cave in. I had fooled myself into believing, since she had never mentioned
it, that somehow she didn’t mind living up north for part of the week. We knew she
liked Mel and one of the other women who worked with her. She never talked about the
other residents, but that wasn’t surprising since she didn’t really have any friends
in Toronto, either. Every Wednesday or Thursday when she made the trek up there, and
on Sunday afternoons when I met the van at the truck stop to bring her home, my heart
constricted and my skin tingled. I was nauseated by the situation. But she didn’t
cry or act up, so for months I could fool myself into believing she was happy. Recently,
however, Carly made it obvious that this was not the case; I had to face the truth.

First, she made passing comments in conversations. When it was time to buy a dress
for her bat mitzvah, Tammy asked her if she wanted to come out to the store to look
for one.
“Can you bring it home?”
Carly asked.

“Why?” asked Tammy.

“I don’t want to leave home ever. I miss it too much.”

“Oh, Carly. Do you know why you go to Cedarview?”

“Because I act silly and you want me to be like Taryn but I can’t”

She later wrote a note to Tammy just before heading up to Cedarview for the weekend:
“I am going to Cedarview. I am going to work hard there so I can stay with you.”

Eventually she was direct in her pleas, and began exploring guilt as a strategy—one
in which she became frighteningly proficient.

“Hi Mom,”
she started one Saturday morning on instant messenger.

“Hi Carly. Dad’s here too. How are you today?”

“I’m okay. But I want to come home.”

“I know. You will be home tomorrow and now you stay home until Thursdays.”

“You come today please. I want to come home.”

“You will be home in just one day, Carly. We can’t drive up this afternoon. I know
you’re disappointed, please understand we are doing our best to get you home soon.
What are you doing today? Are you going to the mall?” Tammy tried to redirect her.

“Oh, I get it. You don’t really want me there.”

“You know that is not true! That’s called guilt. You are getting good at it. We have
to say no lots of times to Matthew and Taryn. They cannot get what they want the minute
they want it either.”

“You can come. You just don’t want to.”
“Carly, we can’t. We have to take care of a lot of errands today. Remember, you are
home more now; you just need to be patient.”

“I guess I just, well, wish I were home.”

“I know. I want you here, too. I miss you and love you so much. You know we are working
on this. You have to trust me and just be a bit more patient. Can you do that?”

“yes. I guess.”

“Thank you. I know this is hard.”

“Bye.”

“Bye for now.”

It was becoming harder to ignore the fact that Carly was not a silent observer. She
began telling her therapists that she was acting out because she hated living away
from her family, and using manipulation to force our hand. But when she was home,
she still lacked independence, sleep was challenging, and the complexity of
managing her life frequently overwhelmed us. We could feel the walls pressing in from
both sides.

After dinner one evening Howard and I were trying to get Carly to write with me directly.
He quietly started to edge himself out of the room while Taryn sat across the table
doodling on a pad and half paying attention. Tammy was out with a friend for a coffee.
We had learned to divide and conquer and grab a few minutes for adult social time
whenever we could. “Who’s nice at Cedarview?” I asked Carly innocuously.

“The cows,”
Carly answered. She was learning teen sarcasm and I sensed attitude, even without
the telltale facial expressions or voice.

“Who else?” I asked her, undeterred. I was perhaps prodding at a sore spot, but I
was hoping to hear Carly talk about other residents or staff that she enjoyed spending
time with.

“The ostrich too,”
she said with no evident sense of irony.

“Are the people nice at Cedarview?” I attempted to redirect her.

“They are okay.”

“What is
not
nice about the place?” This was not going as I had hoped, but perhaps as I had expected.

“Being away from you,”
she said. Oomph. The plunge of the guilt dagger struck its mark. Of course, a child
would rather be at home with her family, but we had become good at deflecting reality.
In finding her voice, Carly was able to force us to face up to the truth.

“I know. It makes me sad too, Carly.”

“You are going to have to fix me.”

“You don’t need fixing. You are not broken. You will learn to control yourself better
in time. They are helping you learn to do this.” I left out the part that it was also
allowing Tammy and me to breathe, but I’m sure she could see through my ruse.

“but I can’t,”
Carly said.

“You are already doing so much more than you did a few years ago. You are making great
progress. Carly, you don’t need fixing. Why do you say that? What do you think needs
fixing?”

“My brain.”

“You are not the only one like this, Carly. What do you think about the other kids
with autism at Cedarview?”

“They make me feel sad.”

“Why?” I asked. We had never broached the subject of her peers. Those with autism
are supposed to lack social awareness. With this preconceived notion, we didn’t overly
concern ourselves with her thoughts about a community or peer group. We had made care
and therapy a priority, balancing it with her integration into our family life.

“They are just like me,”
she responded with clarity.
“I want to be around normal people. I belong at home.”