Carly’s Voice (18 page)

“I want Mom to spend time with me. With little me,”
Carly pouted.
“I want to go away with her like Taryn,”
she said, referring to a short trip Tammy had taken with Taryn a few months earlier.
She went on to complain that we sent her away on weekends, referring to a weekly residential
program she had begun to attend at a camp north of the city for children with autism.

Barb was winded. I’m not prepared for this, she thought. As a speech pathologist,
she knew strategies to help kids communicate.
Now she felt she was being thrown into a much tougher role, that of a psychologist.
In the eight years of working with Carly, she had never had a conversation with her,
much less heard an emotional outpouring like this. She was terrified of wasting the
moment, saying something wrong and losing Carly back down the dark tunnel of silence.
I need a brilliant answer, she thought, and called to Howard, who was sitting just
out of view in the hallway.

“You don’t need to be a doctor,” he said. “You have kids. Think like a mother.”

Barb went on to reassure Carly of Tammy’s commitment and love.

“This is something that your mother needs to hear, Carly. Can I tell your mother we
discussed this?” Barb asked.

“Yes. But not that I spell,”
Carly replied, paying no attention to the impossibility of the task.

“How can I tell her if I don’t tell her you spelled all this?” Barb pointed out.

“
You will find a way
,” she said, cryptically.

“Carly, we are all so proud of you. You are making such great progress. You know,
spelling is really going to help you out in the end. Just think, if you spell for
people, you’ll get the things you want. Do you think you can spell for your mom and
dad?”

“No. Stop,”
she answered. Then,
“Maybe.”

Another glimmer of hope. Or was it? I’d like to say this revelation came with a watershed
sense of relief. That would be a lie. Carly wouldn’t type spontaneously. She would
never sit down at a computer or use her voice output device and initiate conversation.
If we attempted to place one in front of her, she would push it away as if it were
Brussels sprouts. Getting her to write took coaxing and reinforcement, generally with
potato chips. And she never spoke with Tammy, her siblings, or me unless Barb or Howard
was at her side. Years later we would learn that what we thought was
teen stubbornness was in fact OCD, obsessive-compulsive disorder. It wasn’t that Carly
didn’t want to type with us; she was unable to force her body to do so unless the
situation was exactly right for her. By right, it meant having Barb and Howard at
her side.

Barb raced over to our house immediately after concluding her session with Carly.
Tammy, Barb, and I sat on the back porch, a covered, open-air extension of our kitchen.
It was a place Tammy and I would often escape to for an early-morning coffee or glass
of wine in the evening. “Is it cocktail hour yet?” I would joke at nine in the morning
after a particularly rough night. Even in the fall, though faded, the garden bloomed
resiliently and the light was warm and golden.

Barb was tearful as she told us about the conversation. “She is so intelligent,” she
said. “She has an awareness, understanding, and feelings so much more sophisticated
than any of us had imagined,” she marveled. “She may look like she is not listening,
or not understanding, but I think we know now that’s probably not the case.” The underlying
knowledge of how hurt Carly felt for being treated like the ugly stepsister hung between
the three of us as we silently sat sipping a drink.

“I don’t know what to say,” I lamely offered.

“I wish she would talk to us. Tell us how she feels,” Tammy said.

“I wouldn’t engage in a power struggle,” Barb intuitively reasoned. “I would speak
in front of her the same way you speak with Taryn. Don’t say anything in her presence
you wouldn’t say to your other kids. Don’t make her type just for practice or to please
us; she knows how to spell. She’ll type when it can be used to satisfy her own needs,
not ours.”

Carly’s growing awareness was in
some
ways exciting; it meant she had intelligence far greater than we imagined. It also
meant that the often-harsh language and brutal honesty that should have been reserved
for moments behind closed doors had not been lost on her.
She was a silent witness to her life in our family. This realization left me with
an overpowering sense of guilt. I was angry at myself and others who spoke hurtful
words, mistakenly assuming they floated over Carly’s head. I regretted every scolding
and the callous comments I would make about Carly’s behavior when speaking with others
directly in front of her. Several years later she told us,
“You know how people talk behind people’s back? With me, they talk in front of my
back.”

Regret for our past, frustration in our present, and anxiety about our future created
a vortex of emotion. Tammy looked thoughtful. She may have felt a sense of guilt in
what Carly told Barb, but she did not let it show. My wife is a pragmatist and likely
was already thinking ahead to what had to change in our life. We had to relearn how
to be with our daughter. There were so many bad habits to break. While her outbursts
and uncontrolled behavior would continue to limit the degree to which Carly would
be able to participate in all aspects of our family life, we immediately ceased talking
in front of her about events we believed were too challenging for her to handle.

We never did let on to Carly that Barb had spoken with us about feeling like a second-class
citizen. Instead, we immediately made plans to experiment with a simple overnight
vacation. Matthew was planning on spending a weekend with a friend and his family
who had moved out of the city to what had been their country house. We told Carly
we wanted to take her downtown to stay overnight in a hotel. “We can swim in the pool,
go out for dinner, and watch TV in bed. Sound good?”

“Eh ess,” she replied with what I imagined to be a gleeful smile.

“Should we invite Taryn?”

“Eh ess,”
she said a second time.

I was grateful that Carly’s jealousy was not so deep-rooted that it would drive a
wedge between the girls.

We began looking for little ways to include Carly in activities
we had formerly thought would not interest her. As long as we had Howard at her side,
we mustered the energy and confidence to venture back to restaurants, holiday dinners
at friends’, and even the occasional movie. Howard was able to cajole and convince
Carly to behave in ways Tammy and I could not. And when Carly erupted into flailing
tantrums, he had the patience to whisk her away and get her refocused. For both Tammy
and me, the wailing set off internal chemical reactions that left us filled with despair.
But Howard was firm and calm and seemingly unscathed by Carly’s temperament.

I had so many questions to ask her. I still do. This awareness that Carly was so there
but so unreachable made me despondent. I felt I was owed an explanation for what was
going on inside her body that caused her outbursts or her compulsiveness. Yet on these
points she was mute. Even when posed by her tireless pair of helpers, she would not
answer questions that would offer any insight into her internal struggles. I would
even have been satisfied with silly banter, the kind Taryn, Matthew, and I engaged
in, about school, TV shows, or my annoying habit of speaking in imaginary foreign
accents and making up tales of adventures in my fictional past. Carly, I’m sure, had
an opinion about all of this. But she would not engage.

It was like having a buffet laid before me and then told not to partake. No manner
of sly manipulation would break the stalemate. “What would you like for dessert, Carly?”
I would ask. “Cake, cookies, or ice cream.” We seldom even served dessert, but if
it would get her typing, I’d gladly have served candy for breakfast. Carly would sit
with her voice output device between us, rocking in her chair and humming. No dessert
was served.

After she began typing, we cycled through various types of equipment hoping that Carly’s
recalcitrance could be assuaged. Each was met with a similar lack of enthusiasm. The
energetic consultants at
the agency that supplied the equipment would optimistically push a new version of
the DynaWrite or some such device in front of Carly and inquire, “Do you like it?”

“No” Carly would choose from the words printed in front of her.

It would be several years before we understood why Carly refused to type on the light,
quick, and convenient equipment. As she began telling us that she wanted to
“be normal, like my sister Taryn,”
it occurred to us that the devices that were intended to help her
join
our world instead made her feel more like one who does not belong. They made her
feel like she was disabled; like she stood out from other kids her age. When I look
back, I can only shake my head at the absurdity of the logic. The squawking, bleating,
flopping, and flapping were much more obvious signs of her disability. But since these
couldn’t be controlled, Carly focused on the handful of things that could. She had
no interest in a bright red plastic device with a strap worn over her shoulder that
in effect said, “Disabled Kid Who Can’t Speak.”

Laptops were still expensive and relatively slow to start up compared to the devices
offered to us, but we reasoned that it was a good alternative. No kid wants an “Augmentative
Communication Device” emblazoned with a metal tag identifying it as leased from a
government agency. But every kid wants their own computer. Thus began our love-hate
relationship with technology. For the next three years we churned through numerous
laptops as they were dropped, slammed shut, and choked to death with the detritus
of potato chips and juice.

We began archiving our conversations with Carly. First, Carly typed only with Barb
and Howard, the valiant magicians who pulled language out of her through her fingertip.
Later, Carly began conversing with a few therapists, doctors, or workers that she
bonded with—always with Howard by her side. Most of the time Carly
worked either at our dining room or kitchen table, or at the round worktable set up
in the basement. Her therapists would sit several feet away, one on either side, and
they would pass the computer back and forth to Carly. Howard often sat to her right
and kept a small bowl of chips in sight, but out of grasp. From the start, Barb and
Howard were careful never to touch Carly as she typed. She was highly ritualistic
because of her OCD, and they didn’t want her to become dependent on physical encouragement.
Their sessions sounded like a one-way conversation between adults. I could often hear
the voices of Barb and Howard rise and fall, but I could never hear my daughter, or
even the mechanical voice from her device or computer. Carly’s written words would
chronicle her childhood.

Bit by bit we were rewarded with glimpses of Carly’s hidden personality. She was becoming
like one of those cakes with the charms and coins baked in. I looked forward to coming
home from work to find out if there was a little surprise. Had she unveiled anything
of what was going on inside?

We once asked her why she kept dumping the contents of her dresser onto the floor
or why she stripped her bed incessantly.

“I know I’m not supposed but I can’t help myself. That’s why I hit myself sometimes.
I’m trying to stop my body from doing something it shouldn’t.”

In the long stretches when Carly would refuse to type in front of Tammy or me, Barb
became a vocal advocate. She continuously reminded us to find ways to make Carly communicate
with words. She developed a sheet of standard questions and laminated it, placing
copies around the house and in a communication book. Rather than a binder of pictures
and symbols alone, Carly now had pages of phrases, words, and concepts (
“I feel sad”
) that she could rifle through and point at to make herself understood. “I want her
to feel like she’s in control,” Barb counseled us. “So much of her life is dictated
to her, she needs to feel like the director now.”

That Carly could begin expressing herself was a relief for all of us. It meant that
over time, she would be assured of some measure of independence. Some of the walls
isolating her from us could be breached. More amazing was the sense of self that was
emerging. I felt like we were discovering the lost city of Angkor. As we hacked through
the tangled vines and overgrowth that shrouded Carly from us, we were discovering
a fully formed, intricate personality.

Keeping Carly busy was still one of our biggest goals. Because of her restlessness,
there was no “just hanging out.” Tammy found a winter holiday camp at a community
center nearby that would keep her occupied while school was closed for the winter
break. One of her therapists, Dina, agreed to supervise her, as the program was designed
for nonchallenged kids. There were really very few programs for kids with autism,
and what the hell, we thought, shouldn’t she be around other kids whose behavior we
wanted her to imitate? As long as those running the programs would have her, and the
activities could be modified with her ABA therapist’s assistance, we were game.

The camp week was successful. Interestingly, the other kids—all around nine or ten
years old—warmly welcomed Carly. They were fascinated by her odd behavior, juxtaposed
with her eagerness to be a part of the activity. I have always been heartened and
amazed that kids welcome Carly far more than many adults do. I had anticipated a backlash
or teasing, but over the years those have occurred infrequently. Somehow, even when
she won’t write, Carly has an ability to engage other children that I cannot explain.
Perhaps it comes from her sudden smile and giggle: fleeting and surprising but infectious.