Carly’s Voice (26 page)

As the story unfolded, a journey “through the gauntlet” to prove the princess’s merit,
we saw creative writing as a possible outlet for a nonaudible mind. It was also another
way for us to peek inside Carly, to learn by observation. Although fantasy, the tale
was reflective of Carly’s life, and I was curious to see how she would portray her
world. But creative writing is challenging under the ideal situations, and Carly’s
pace of typing, and struggles with focus and sitting, still made the endeavor formidable.

One afternoon Matthew was online with Carly—her preferred way of speaking with him,
too.

“Hi, Carly. Do you want to talk?” Matthew asked her.

“no working on story. mom wants lip stick on a pig,”
she responded.

“I’m glad you’re working on your story again. What do you mean mom wants lipstick
on a pig?”

“she wants me to finish my story too fast and it’s not going to look good. like a
pig with lipstick. Duh.”

“Oh, sorry,” Matthew replied, missing the joke.

“you should be,”
Carly retorted.

“someone’s got attitude!”

“so put it away,”
Carly sassed.

“you’re full of it today, aren’t you? why don’t you put it away?”

“full of what?”
she teased.

“attitude,” Matthew replied, naïvely.

“duh i know sarcasm.”

We think we know our children—they are either easygoing or intense, pleasant or cranky,
book-smart, street-smart, or not-so-smart. Carly, however, was a medley and constantly
changing. It was unnerving. When she was a small child, I imagined that she
was like a stranger in a strange land. Perhaps she had conversations in her head,
but she lived in a world where those around her spoke an incomprehensible foreign
tongue making her a perpetual tourist among us. But I was wrong. She had been listening,
learning, thinking. The far-off stares were not signs she was lost. She was pondering
and processing. Writing lines of copy for her book, perhaps. Coming up with jokes
or clever observations. And thinking—always thinking.

While I was amazed to find that Carly was a clever, sassy kid, it was also confounding.
Carly neither lived in the world of the profoundly disabled nor fit in our world.
Her intelligence was opening the door for an exciting future; her behavior kept her
tethered, unable to cross the threshold. I felt both grateful and resentful. I knew
many other families coping with children with autism who had not had the simple, powerful
gift of having a conversation with their child. But I knew far more families who lived
traditional, calm lives with their children at home, progressing normally.

It was Pandora’s box. The more she opened up, the more she yearned to be like everyone
else.

“Why can’t I talk like you,”
she asked Barb.

“Your muscles don’t work properly, but you do a great job with your computer.”

“but what’s wrong with my voice.”

“Nothing is wrong with your voice. Your voice works fine. It has to do with the muscles
in your mouth and tongue.”

“fix it. I want to talk like Taryn.”

“I want to be honest with you, Carly. We can work on your sounds, but I don’t think
you will ever talk like Taryn,” Barb confessed. I was appreciative that she was having
this conversation with Carly. I already felt like I delivered enough of the bad news
in her life.

“that sucks,”
Carly responded.
“whats the point if I can’t be normal. I want to be normal. Help me.”

“What’s normal?” asked Barb

“like every other kid my age.”

With her growing vocabulary and self-perception came the recognition of how unlike
her twin she was. Their intellect and humor may have been similar, but that was about
the extent of what they had in common.

One Wednesday evening, the night before she was to return to the respite program for
the balance of the week, Carly wrote,
“I want to make money.”

“Why do you need money?” I asked. Carly had never asked for anything material.

“I want to buy the house next door. Because I want to live beside you,”
she replied before running from the room, flinging herself to the floor in the front
hallway.

I was not prepared for the answer. Taryn went quiet and looked down at the table.
Howard and I turned away from each other so as not to see the mutual hurt. The more
we got to know Carly, the more we realized how unfair her life was becoming.

“We are not sending you away as
punishment
,” I told her the next morning. “The staff at Cedarview is trained to help you in
a way we can’t at home.” But I had trouble convincing myself, and realized that Carly
was too intelligent to be comforted by this rationalization, either.

With Carly more frequently expressing her unhappiness, it was clear we’d need to start
thinking about other options. Over the course of the year, I had made some peace with
the decision to place Carly at Cedarview. Her friendship with Mel, her academic progress,
and her accomplishments in communication all felt like triumphs that were worth the
emotional price of sending her away. These triumphs, however, did not make living
together full-time a possibility. Carly still required around-the-clock supervision.
Residential care was our survival plan.

I found myself somewhat jealous of parents with children of lesser cognitive ability,
as if they were more justified in placing their child in residential care—a callousness
of which I am now ashamed. But we were like itinerants, never able to set down roots,
constantly on the move.

Everything in our family was lived on extremes. When Carly was home, her presence
was enormous and all-consuming. When she was gone, I felt empty and hollow. Carly’s
intelligence far exceeded that of most kids, but her behavior was far below that of
the mainstream. The polar extremes were exhausting. Our life was too black-and-white,
and I yearned for some gray—some in-between. I hoped that when Carly was away, absence
would make the heart grow blinder and in time I would ache less while she was away,
and be more at peace when she was at home. For the time being we would have to live
in a binary world—Carly here or gone—and that would have to be good enough. At least
for a little while.

Sometimes when you are in a crowded room the best way to be heard is to yell. But
the best way to be understood is to explain yourself.

—Carly, June 2009

In a world of silence, communication is everywhere. You just have to know how to look.

—Carly

It is a ritual in our religion, as it is in many others, to celebrate a child’s coming
of age. For parents of someone who is remarkably challenged, these milestones are
bittersweet. We had long ago put to rest any hope that Carly would have the enjoyment
of passing through the evolving markings of life: a first date, high school graduation,
attending university, walking down the aisle. We had to content ourselves with celebrating
Carly’s own triumphs, such as toilet training and, on occasion, writing.

Pushed by Barb, however, we reflected on our girls’ bat mitzvah, the Jewish custom
of marking the move from childhood to adulthood—a symbolic transition when a child
takes responsibility for her own acts of good or evil, generosity or selfishness.
Jaded into still seeing Carly for what she could
not
do, we assumed this celebration would be one-sided in favor of Taryn. So many aspects
of Taryn’s daily life were defined by her sister’s autism and disability,
and in this case we felt she deserved the same experience her friends had. But, as
two of Carly’s greatest advocates, Barb and Howard insisted that Carly play a meaningful
role in the religious service and celebration that would follow.

So as the fall of 2007 approached, we encouraged Carly to write a short speech that
we would read at the event scheduled for January 2008. She and I had been having short
conversations over email and instant messenger. I was generally home too late from
work or the gym to eat dinner with the kids. So, after her bath, Carly would sit at
the table while I ate, and we would either play a game of Connect Four (a game she
quickly learned to trounce me in) or talk. Carly would sit with the laptop in front
of her, me with my plate in front of me. I would encourage her to ask me questions
or tell me anything she wanted. Had we eaten dinner as a family, all sitting around
a table cluttered with dishes, we would have been focused on helping Carly feed herself
properly and conversation would have been impossible. Although unconventional, it
was our way of bonding.

“what will I say?”
she asked me, referring to the topic of her bat mitzvah speech.

“I think you should thank people for coming,” I replied. To date, her conversations
and emails had been short and simple. We knew at this point that she was witty and
had a good vocabulary. But other than
The Elephant Princess
, Carly had never written anything longer than a few sentences, so the notion of a
speech was daunting.

“Maybe tell them a little bit about what it’s like to be you. People are curious to
understand autism, and now that you can write, you have the chance.” I was enjoying
the new stage of our relationship. Carly and I were actually conversing. The first
twelve years of her life had been a noisy silence devoid of language or meaningful
answers. As painfully slow as it was, I relished these interchanges and
the ability to offer advice. I could be more than a caregiver: I could actually be
her father.

Though she had been writing for the past year, we still had limited insight into Carly’s
puzzling behaviors, explosive outbursts, and odd noises. Carly was anything but calm,
which made typing an onerous task. Her emails or instant messenger conversations over
the past twelve months generally consisted of short requests. She also told us, several
years later, that in the beginning she didn’t like the sensation of touching the computer
keys. Autism can affect senses in ways we can’t even imagine. What feels like nothing
for neurotypical people may be excruciating for those with autism. In these early
days, after she learned to type, Carly’s language was terse and staccato because of
the formidable challenge; the pace was creeping.

To help her write her speech, I would prompt her with questions or thoughts, and she
would respond with answers. We would then cut and paste these phrases together into
paragraphs. I felt like we were building a house out of pebbles. But it was the first
creative project we collaborated on, and I loved it. Not only was I helping Carly
accomplish something powerful, I was learning so much about her. By the time the speech
was complete, I would have a dramatically different view of my daughter.

Though progress was slow, she was exploring feelings, reflections, and self-knowledge
that she had not yet expressed in her writing. In their afternoon sessions, Barb would
work with Carly by prompting her with additional ideas when she seemed to stall and
keep her on task with a series of reward-based goals. But soon we started to see that
Carly had her own ideas of how the speech should unfold.