Carly’s Voice (11 page)

At three in the morning, I was in no mood for cleaning up. I left the debris on the
floor and took Carly back upstairs, put her on the toilet, and cleaned her up. Back
in her room, I remade the bed for the third or fourth time that night and got her
back under the covers. This time I knew I wouldn’t be going back to my own room. Not
tonight. I lay down next to her again, pinning her in with the blankets and the weight
of my arms and legs across her. She sometimes likes the sensation of swaddling, but
by this point, I mostly did it to hold her in place. I knew I wouldn’t sleep, but
at least I wouldn’t be moving. Carly arched her back, screaming and flailing; the
tight hospital corners my mother had taught me to make gave way as Carly sprang from
the bed again. She jumped around the room yelping.

I considered getting Tammy up to give me some relief. This would have been a double-edged
sword. Tammy wears her frustration much closer to the surface than I do. If she started
yelling at Carly, I would feel worse than if I just dealt with this myself. Mothers
are supposed to have limitless patience, but I know too well that this isn’t true.
Tammy was drained. Her daytimes were not so different from my nights. She spent thankless
afternoons shadowing Carly and navigating the mostly unchartered waters of caring
for a child severely afflicted with autism. Hers was a relentless struggle to seek
assistance from government agencies—help for battle-scarred
families like ours to cope with what no family should have to cope with alone.

Then there was the matter of Tammy’s health. After years of struggling with cancer
and colitis, she felt like an old woman although she was only forty. When I looked
at her, I’d see a sadness that was not there when we first married. She often complained
of an overwhelming sense of hopelessness. “I don’t see a way out of this,” she would
say. But every day she persevered in her attempts to fix our daughter. “There really
is little choice,” I told friends who sympathetically inquired about our situation.
“What else can we do?”

And so I tried to manage these nighttime battles on my own as best I could. If there
was an alternative to this hell, I couldn’t find it. On nights like this I found myself
reflecting on the desperate case of a young mother, Dr. Killinger-Johnson, who had
lived nearby. On a sticky morning during the summer of 2000, she awoke early, took
her six-month-old baby, and jumped in front of a subway car as it entered the local
station. I had driven by the house owned by Dr. Killinger-Johnson many times before
the tragedy. The house was, and still remains, beautifully landscaped and pristine.
At night, I used to like to peek in the window as I passed because the interior looked
so elegant and peaceful. I liked to believe that the house’s appearance reflected
the lives of the people inside. Her death, and that of her child, was a sad and shocking
story made worse by the fact that the she was a psychiatrist and the daughter of a
psychologist who counseled those with depression. It seems that even experts in desperation
are not immune to it.

Many were horrified by the story, but my wife often spoke empathetically about Dr.
Killinger-Johnson. Not too publicly, mostly to me, she would say, “I can imagine what
she was feeling. If not for Taryn and Matthew . . .” Then, eerily, her voice would
drift off, ending with “I could never leave them motherless.” She would take
a deep breath and steel herself up for the next challenge. She clearly empathized
with the dark hole inside the perfect-looking life of our neighbor. We, too, had a
house and life that looked tidy on the outside but was a hurricane on the inside.

When Tammy would speak this way, a wave of nausea would flood over me. Not because
she sounded irrational; in fact, it was just the opposite. Week after week of sleeplessness
and exhaustion left me with little argumentative response. Because of Tammy’s resolve,
her tenacity, and her stalwart rescue missions for our daughter, I never considered
her dark fantasy to be a legitimate risk. In reality, when things got too awful, Tammy
would just get in her car and drive around until she calmed down. It didn’t matter
what time of night it was. And I just tried to breathe through it, not exactly praying,
but repeating to myself, “Just let me get through one more night.” We had become masters
of surviving Carly.

Eventually morning ended the seemingly endless night; one that had never really begun.
Light crept through the shades. Carly’s room filled with the happy tweets of the birds
that nested near the small portal window of her room. I sat on the edge of her bed.
It was close to five-thirty, and she was finally calming down, though still far from
placid. Her room looked like a tornado had hit it. But by afternoon, Mari would have
done her magic; everything would be back in its place, creating a temporary sense
of order. Carly’s room would once again be a pretty one with custom-made pink and
white drapes and a coordinated coverlet; an antique armoire and dresser with little
lamps, picture frames, and figurines resting in the corners. It should, I thought,
have been a room filled with giggles and “sleep tight, don’t let the bedbugs bite,”
not chaos and turmoil.

I rested my head on my hands. My face felt numb and rubbery, the way your lip feels
after a shot of Novocain. I looked at my sweet, tormented little girl, her thick wavy
hair erupting from her head, the big green eyes with long eyelashes, and her broad
cheekbones. “So beautiful,” I whispered out loud. Inside I longed for something more.
A father can give and give, but he wants something back. Just a hug. Or a silly malapropism.
“Oh, Daddy! Look at the slobber!” Taryn had once said, referring to the neighbor’s
inflatable lobster floating in their pool. A smile and a sweet memory would be fair
payment for all this.

I looked at her again; Carly was finally sleeping. Her breathing was calm and regular,
her forehead damp with perspiration. I lay down gently next to her so as not to wake
her, still longing for some sense of connection. I could feel my anger dissipate.
There was so much I wanted for her, simple things, impossible things. “Carly, I want
you to be calm and happy,” I whispered. “I want you to speak. I want you to play and
have friends and go to school. I want you to accomplish something you will feel proud
of. I want you to sit at the dinner table and share in the conversation. I want you
to have a first boyfriend whom I will regard with skepticism, and then a husband whom
I’ll welcome with open arms. I want you to have a life. I want you to know peace.
I want . . .” I cuddled her closer. She was still just a little girl, soft and warm.
She smelled sweet, like bath gel and shampoo.

I drifted off to sleep.

Excerpt from pharmacology consult clinic, September 15, 2002:

Anne Murphy, MD, FRCPC

Peggy Fitzpatric, MD, FRCPC

Carly was sent to us on consult from Dr. Nancy Robards . . . during the interview
Carly was quite agitated and demonstrated a number of repetitive sensory activities.
She continues to lick her hands and tap the bottom of her chin . . . some time was
spent with mom discussing the importance of respite care and it is good that she has
a contact at Kerry’s Place. The number for the clinical social worker was given to
arrange for respite care. The importance of sleep was stressed and it was suggested
that Carly’s melatonin be increased to 9 mg at nighttime. In addition, we suggested
an increase in the Risperdal . . .

At what point do people realize they’ve reached rock bottom? For addicts, I suppose
it’s when they’ve lost everything. No house. No job. No friends or family left willing
to enable their death spiral. But I was getting the sense that for us there was no
bottom. It seemed like there was always potential for a little more bad news, a few
more challenges. Even though Carly was still a child, Tammy and I felt like we had
already lived a lifetime of child-rearing. Although Carly was making some academic
gains and we continued to battle for her place in the school system, her behaviors
continued to confound and exhaust us. Nights were still an endless routine of making
ruined beds and corralling Carly into her room. The incessant tantrumlike behaviors
made Tammy’s heart race and pushed me to the limits of forgiveness. The plaintive
bleating and head banging became so routine that neither of us could feel sympathy—only
frustration and anger.

As the days dragged into weeks and months, we realized this was not a life but a slow
demise. It was either Carly or us. Years before, one of the staff at Northland, the
special-needs school Carly attended as a toddler, introduced us to the idea of respite
care. Respite is the chance for families raising disabled children to have a break.
In principle, these little breaks were supposed to give the families a chance to regain
their strength and perspective.

Run by various agencies, respite programs take place in either residential houses
that have been converted to group homes or large institutional facilities. Pick your
poison. The woman at Carly’s school suggested we contact Caring Friends, an organization
that ran six or seven residential homes for teens with autism who were too challenging
to raise at home. The families of several of Carly’s classmates made use of their
services. The homes were located in diverse suburbs where larger houses were affordable
and neighbors kept their distance. Clients, as they were known, might live in a residence
on a part-time or full-time basis. In addition to these more
permanent arrangements, families could plan occasional respite weekends. The executive
director of the facilities suggested that this might be appropriate for us. Although
Carly would be younger than the other residents, she explained, she would have her
own room and sufficient staff to care for her.

On a parched summer afternoon when Carly was around five, Tammy and I drove out to
visit a home that had space available for a weekend every month or two. It was a typical
suburban Toronto home located in the labyrinth of a planned community about forty-five
minutes east of our house. As we pulled up, the only distinguishing feature I noted
was the large, somewhat battered transport van parked in the driveway. Over time,
I was to learn that such a vehicle was the hallmark of group homes.

We walked up the path to the front door and the façade of normalcy began to fade.
I noticed the cracked garage light, skeletal plants gasping in the dried flowerbed,
and the sprung spring on the screen door, small signs I would learn are symptoms of
houses that are not homes, inhabited by residents who have bigger things to tackle
than aesthetics.

Andrea, the facility’s manager, welcomed us in. She was a woman in her forties, casually
dressed in jeans and a T-shirt. Like many of the other managers of residential homes
we would meet over the years, she had a calm professionalism, almost a detachment
from the noisy chaos of the house. As we chatted briefly, I was struck by the matter-of-factness
in the details of handing one’s child over to strangers. There was no judgment, no
probing of
why
we were doing what we were doing. Andrea was more interested in Carly’s issues, her
condition, what she needed. It was a relief that guilt was not a required payment
for the services provided.

“We can get more of the details later,” said Andrea. “Why don’t I show you around
the house and introduce you to some of the staff.”

From the front hall, I looked around the house hoping for some
measure of cheer. I could feel Tammy’s anxiety rising. Her eyes darted around the
open-space living and dining rooms; I think I heard her sigh. The furnishings, likely
donated by well-meaning families, were sparse and well-tormented: a cracked leather
sofa, and someone’s uncle’s La-Z-Boy that never had seen better days. An overhead
light shone, its mismatched bulbs casting urine-colored light. The whitewashed walls
were no match for the larger residents whose outbursts left them dented, scuffed,
and pockmarked like a war zone. The kitchen extended into a family room where four
or five boys sat around watching TV. The staff, a few young women, was making lunch.
I saw the same multitasking we engaged in at home; trying to prepare sandwiches with
one hand and blocking one of their charges from pillaging the refrigerator with the
other.

Although I saw nothing overtly disturbing, there was little to comfort, either. The
house had all the basics for survival. Unbreakable dishes and cups, clunky furniture,
a table at which to eat. This was a place for strangers who lived together, but in
the summer heat I felt no warmth.

I tried to maintain an upbeat air as I watched these gangly teenagers barking, flapping
their arms, and shaking their heads. How could I leave my daughter, a girl no more
than four feet tall, in this land of giants? My stomach churned.

“Are there any girls or smaller children who live here?” I asked Andrea.