Carly’s Voice (12 page)

“There is a girl, who is twelve. She lives here Monday to Friday. Her mother passed
away earlier this year, and her father finds it difficult to manage,” she explained.
I could not meet Tammy’s downward gaze. Only a few years past her first bout of lymphoma
and chemo, I could see the film running in her mind—
will that be us?
But she was silent.

“And there is a little boy, about eight, who will be here some of the weekends,” Andrea
continued.

We would learn over and over that autism was primarily a world of boys. For every
female diagnosed with the disorder, there are four males. Many grew to be large, loud
near-men with stamping-mad tendencies. Their behaviors are vocal and physical and
sometimes aggressive. Carly, on the other hand, had more feral traits—smearing gobs
of cream cheese on the furniture, tearing into packages of food, or repetitively flinging
the clothes from her dresser and cupboard. But she was not aggressive—never hit or
bit others, shrieked, or grew violent. Carly was not like most kids with autism. Even
in her oddness, Carly was odd.

“Do you do activities with the kids?” asked Tammy. “Carly doesn’t sit still. She doesn’t
watch TV. She needs exercise.”

“Depending on staff, we go out for walks or to the mall,” the woman said hopefully.

The thought of Carly spending a weekend inside on a warm sunny day made my soul sink.
I grew up in a time and place where days were spent outdoors—roaming and finding adventure.
I knew that left to her own devices, Carly would sit and rock, twisting and breaking
whatever small items she could get her tiny hands on.

“Respite is for you, not Carly,” a friend would tell us as we lamented our decision
over dinner out one night. I repeated this over and over in my head like a mantra.
At home, we would try to make Carly’s life as disciplined and perfect as we could.
For two days every month, good enough would have to be good enough. I wanted to feel
relief in the permission to let go, but all I felt was profound sadness. Looking over
at Tammy, I saw blankness in her eyes. It was a look she wore most days now. In a
glance I could see she felt a desperation so thick she was suffocating.

Andrea took us to the second floor, where we poked our heads into the bedrooms and
bathrooms. The rooms were bland, with a few personal effects of their residents strewn
on the bed or dresser. Some rooms were reminiscent of a college dorm; the clutter
was
typical of teenage boys, a canister of Axe Body Spray and a few posters of rock heroes
or voluptuous movie stars. But all the rock posters and cans of body spray in the
world will never make this home. Only home is home.

We finished the tour and sat in a small room used as the administrative office. Andrea
explained the schedule, handed us the ream of forms we would need to complete, and
reviewed the qualifications of the staff that worked in the house. We had no doubts
that the program was well managed. It had come highly recommended by people we respected.
But this did little to improve our spirits. Rather than seeing this as a gift, we
saw this as the first stumble onto the slippery slope of resignation. Today it was
the occasional resting point, but one day, we feared, it would be the final destination.

We drove home in silence. Neither of us strong enough to broach the subject. But it
was understood: We would give this a try.

Several weeks later, we packed Carly’s little overnight bag for her first respite
weekend. “Pack some of Carly’s favorite things,” Andrea had suggested. A toy. A blanket.
A pillow. But Carly had formed no attachments save for potato chips. She did not take
comfort in possessions or people, from what we could tell. But we packed the blanket
and stuffed animals that we tucked Carly into bed with every night. And a few of the
stim toys—objects that she liked to fiddle with to relax herself—such as the octagon
of colorful wooden tubes and bells strung together with elastic thread that she could
stretch and rattle. Optimistically, we included some of the picture books I read to
her every night.

Tammy and I tried to explain to her siblings why Carly was going away for a weekend.
“It’s like a sleepover,” I lied. I can’t remember what we explained to Carly. We clung
to the belief that she didn’t fully comprehend her surroundings. There were never
tearful good-byes when we dropped her off at day programs or school
like other normal kids. Perhaps parting from her family carried no fear or anxiety
for her. I wish I could say the same for me.

I have limited recollection of the first few times Carly stayed at Caring Friends.
I cannot recall what we did in those first weekends of freedom. Did we laugh? Run
errands? Go out with friends? Probably we slept. Fitfully.

I do, however, remember the last. Tammy and I had quickly learned that the key to
survival was to take turns with thankless tasks. Both the dropping off and the picking
up duties had to be shared, as neither of us could handle that much emotional stress
in one weekend. Leaving Carly filled me with a sense of loss and guilt, followed by
the giddiness of knowing I could slow down if only for two days, followed by the guilt
over feeling giddiness. The pick-up on Sunday brought relief that Carly seemed no
worse for wear from her weekend. It also brought the dread of facing the next week
back in the hole in which we started.

It was my turn to drive pick-up duty on what would be Carly’s final stay at Caring
Friends. That weekend, we had done what the social worker at the agency that funded
our respite program suggested: We acted like a regular family. On Saturday, Tammy
and I took Matthew and Taryn to see a movie and out for dinner, and on Sunday, we
relaxed with
The New York Times
over extended cups of coffee.

When I got to the house on Sunday evening, I found her on the sofa in the den, rocking
back and forth, her hands over her ears. This did not surprise me, as it was the only
state of rest she knew, other than sleep. She was wearing a soiled T-shirt and the
elastic-waisted jeans she had been wearing when she arrived on Friday. And she reeked.
At five Carly was still not consistently toilet trained.

After cleaning her up the best I could and disposing of the soiled diaper, I sought
out the shift manager. “What the hell?” I asked her. “Why is Carly in the same clothes
from Friday? And she’s filthy!”

“I’m not sure,” she said. “The worker that was with her this afternoon is gone for
the day,” as if this were a logical explanation. Then, “And we’ve been a little short-staffed
this weekend.”

For a brief moment I actually empathized. I knew what it was like to herd cats with
one hand. As I gathered up Carly, so small and shabby, my open-mindedness dissipated.
Over the past months, Carly had come home clean and healthy. Sometimes she would bring
a small craft she had done. Not knowing all the details of how Carly’s time had been
spent while away made it easier to accept that everything was fine. Or if not fine,
then acceptable. But seeing Carly in a state of seeming neglect and the staff’s unapologetic
nature led me to wonder whether this was not a thoroughly unusual circumstance.

The shift manager took out a clipboard as we were leaving. “Shall I put you down for
the same weekend next month?” she asked.

“No, I don’t think so,” I said. Then, just in case, I added, “We’ll call you during
the week,” as I led Carly out the door into the chilled dusk.

Exhaustion had given us the permission to place Carly in respite. The sleeplessness,
the inability to spend time with Taryn and Matthew, or even to take a shower without
worrying about what hell Carly was causing, was unsustainable. Handing our child to
others to care for—was that not a final act of desperation? I realized, as I fastened
Carly into her booster seat and closed the car door, that even this extreme act failed
to stop our free fall. Placing Carly in the hands of others, even for a few days,
left a hollow feeling in my gut. I could not relax despite the quiet in the house.
Looking at my soiled daughter rocking in her car seat, my conscience jeered, “I told
you so.”

As the dizzying fall continued, I lamented as I knew we had not yet reached rock bottom.

“Susan,” I said, “what can we expect?” We had come back in for another consult with
the psychologist who had been following Carly’s development since our daughter was
four years old. I had reread her latest evaluation over and over, each time feeling
more lost.

Tammy sat in the chair next to mine as Dr. Marcotte reviewed the findings in the latest
of what would become biannual evaluations. She hedged. “You two are doing everything
you can for her. More than most. Keep in her face. Keep pushing her.”

“What will her future look like?” I try again, hoping for some measure of specificity.
I like things in neat steps and stages.

“It’s very hard to tell how far a child like Carly may progress.”

We sit in silence, Tammy looking worn, drained. Having now survived nearly a decade
of Hurricane Carly, we had hoped for some measure of promise. Some tiny piece of stony
land that wouldn’t sink under our step.

“But what
might
her future look like? As an adult?” I press on, undeterred.

“Carly may be able to function somewhat independently. Maybe even a vocational job.”

My family is a family of professionals. Each generation encouraged to stretch farther
than the previous. Mopping the floors at McDonald’s was not ever a part of the plan.
Today I snort at my arrogance and small-mindedness. Tammy and I had had high expectations
for all of our children. To be happy and independent, for sure, but to do something
important and worldly. We had clung to some hope that Carly would emerge from this
as a child emerges from a
phase
.

“I see,” I lie. “And our living situation?” It’s all I can manage to articulate. I
don’t like choking up in public, and I see Tammy is now fighting hard not to cry.
She squeezed her hands tightly in her lap and looked out the window.

“You can only do your best, for as long as possible,” the doctor continued. “There
are group facilities you can explore when the time comes . . .” she said vaguely.

“I see,” I said again. But I still didn’t.

I battled the deflating loss of hope that Carly would ever catch up to her siblings.
Along with the grief came a crushing
boredom
. I had hoped that by the time Taryn and Carly were well into their primary school
years that life would be busy with family activities. Although I don’t consider myself
the super dad, the type that coaches soccer, plays football with his kids, and volunteers
at the school, I did look forward to spending time with my children. Matthew and I
had taken up karate when he was about nine. Two or three times a week we trained at
a dojo nearby and it became a routine we continued until we both earned our black
belts around the time he finished high school.

Taryn and I played games, or I would take her to swimming, soccer, and hockey practice
and watch her outpace boys twice her size. She had earned the nickname “Minnie” for
her diminutive stature—all skinniness and smiles. Carly, however, was impossible to
engage. Despite the fact that she never stopped moving, she didn’t
do
anything. Unless being guided through an activity by one of the therapists, Carly
would lapse into one of two modes: sit and rock or run and destroy.

We met other families in the autism community. Many seemed to embrace their child’s
disorder as if their uniqueness was as benign as left-handedness or freckles. “I think
they’re in denial,” Tammy once said.

I sensed their admiration of their child’s unusual behavior to be genuine, and I was
jealous. I saw no beauty in this condition. Autism was a thief. The opportunities
it stole from Carly were obvious: the chance to participate, to play, to learn, to
fit in. It stole a sister from Matthew and Taryn. It stole energy and money and patience.
It was stealing our daughter, bit by bit. I saw no beauty, only evil. What force of
good attempts to rob a parent of the love of a child? I was greedy; while I had two
children with whom I could speak, play, and be a father, I wanted all three.

Some parents that we met through our autism network and from programs Carly attended
were capable of filling the role of therapist. In fact, a main tenet of ABA is to
include parents in the training so they can provide consistent direction. Tammy and
I marveled at their patience, sitting on the floor and supervising their youngsters
as they put colored pegs in holes for a reward. The mere thought of it made me yawn.
I found that the style of communicating with my child in the manner of a therapist
turned me from a parent into an instructor, further distancing me from my daughter
rather than bringing me closer.

“I feel like I should spend time learning Carly’s programs,” I told
Tammy. “At least I’d have something to do with her.” Lowering my voice out of embarrassment,
I added, “But I hate doing those repetitive tasks. It’s so freakin’ dull.”