Carly’s Voice (27 page)

“I want to pick a Jewish topic to talk about,”
Carly told Barb one day when the speech was a paragraph or two long.

Barb went on to explain a concept known as
tzedakah
, the act of charity.

“I know what it is,”
Carly informed her.

“How do you know that, Carly?” Barb asked her, doubtfully.

“At your school,”
Carly retorted, referring to Northland, where the two had first met. At that time,
Carly was at her most erratic and uncontrollable self. Although she participated in
activities such as music, stories, circle time, and crafts, no one really considered
that she might actually be absorbing the more subtle and intellectual concepts such
as the spiritual value of kindness. That was seven years earlier, and we were amazed
that she was able to comprehend the mature concept of charity—much less remember the
Hebrew word for it—so many years later.

“What do you think of my idea?” Barb continued.

“I like it,”
Carly replied.

Barb suggested that perhaps, in preparation for the bat mitzvah, Carly could actually
perform an act of altruism, not merely write about it.

“I want to make food for people who need it,”
Carly decided.

While it is not unusual to partake in such a project as part of the coming-of-age
ritual, I was awed by my daughter’s enthusiasm to help those less fortunate. Those
less
fortunate? Who could possibly be less fortunate than a girl possessed by a driving
energy that produced destruction? A girl who was showing the signs of creative thought
but who could not control the actions of her body? And yet in the following weeks
she actively participated in baking cookies, shopping for food, and paying a visit
to a men’s homeless shelter to make the donation. As she sloppily mixed the cookie
dough, my hand over hers gripping the whisk, I wondered what else was going on inside
her head. Even as I felt a warm sense of pride at Carly’s thoughtfulness, sadness
clouded the moment. Despite our
best efforts, she will always require someone else’s hand guiding hers.

Sitting at my desk one morning in early October, I saw Carly sign onto her instant
messenger. I instinctively smiled. “Carly has signed in,” my screen read, almost like
a cheerful accomplishment in and of itself.

“I want to write a letter with you,”
she typed.

“That’s a good idea,” I replied. I was thrilled that Carly was beginning to reach
out and use her voice in ways that extended past requesting chips or popcorn. “You
need to write a letter to Marty and Pop Pop,” I reminded her. “To thank them for your
new computer.”

“I want to write a different one,”
she said.
“I want to write to Ellen.”

The time code at the start of each message on my computer screen taunted me. This
simple request would take no more than thirty seconds coming from any other twelve-year-old.
But Carly had to scan the keyboard and peck one letter at a time. She often needed
breaks to stand up and jump around to release the eternal restlessness that haunts
her body. This short conversation took an excruciating forty-five minutes. During
the time she made the request, I had held a brief meeting in my office and written
a memo of my own.

“Who is Ellen?” I asked. No response. Knowing that Howard would be sitting at Carly’s
side, I persevered. “Who does she mean, Howard?”

“The one I dance to,”
she continued, finally.
“I can’t spell her last name. It’s too funny.”

“It’s Ellen DeGeneres,” Howard informed me. “That’s who she dances to.”

“That’s funny, Carly,” I replied, shaking my head. As Carly never sits calmly in front
of the television, I didn’t immediately make the connection. “Okay. What do you want
to tell her?”

With over an hour invested in this quest, I knew I had to press on. We had learned
long ago to resist the temptation to write long responses or ask complicated, run-on
questions.

“Howard says that she shares the same birthday with me.”

“Cool. What do you want to tell her?”

“I want to make a wish.”

“You want to tell Ellen your wish? What’s your wish?” I was now thoroughly intrigued.
If you were asking for something for the first time with a newfound voice, what would
it be? Would her wish be for something frivolous like a computer game console or iPod?
Simple, like a signed autograph from Ellen? Other than requests for basic needs or
treats, I had never known Carly to ask for anything.

“cant say now will telll you later,”
she teased.

After taking a break for lunch, which allowed me to cram two hours of work into thirty
minutes, Carly came back online and we started the letter. “I think you should start
by introducing yourself, Carly,” I suggested.

“my name is carly I am from Toronto,”
started the first letter my daughter ever wrote.
“I have autism I cant talk I can spell on myyy computer,”
she continued. I was struck by the fact that the onerous task of typing would make
Carly’s conversations so direct and to the point. Any extra adjectives, adverbs, even
a simple article could add minutes to the task.

“its hard for me to sit still or play a game.”

“How does this make you feel?” I suggested.

“it ok sometimes but I get sad and frusterrateted. I want to be like other girls.”

This was not the first time Carly had made this painful admission, but it was still
new enough that it stung. It had been easier to think that she was so intellectually
challenged that she didn’t notice how far she stood from the crowd. Those who make
odd noises, flap their hands, walk in a shuffling run or a stiff-legged march, are
they aware that others notice? Do they care what others think? How misguided I was
to think they don’t.

Carly had complained frequently,
“I need you to fix me. Fix my brain. My mouth feels silly.”
She would then slam shut the computer and run from the room in a fit, crying and
throwing herself to the floor. But now she was beginning to come to terms with her
condition. Once Tammy asked Carly bluntly if she knew what autism was.

“It’s something I have that other people don’t like to see,”
she responded poetically.

After several weeks of slow progress, the letter was nearly complete. In it, she had
introduced herself and made her request of Ellen but hadn’t wrapped it up. During
one of our evening routines—Carly freshly bathed and sitting at the kitchen table
with Howard on one side, me on the other eating dinner—I told her, “It’s time to get
this letter finished.”

In truth, I felt this exercise was a charade. I could barely get Taryn to clean up
her room, much less convince a celebrity to read our daughter’s letter, but with Howard’s
quiet confidence, Carly’s steadfast effort, and Tammy’s unwavering networking, I kind
of went along with the plan. Carly was hesitating and wrapping up the letter had stalled.
“Finish it with ‘thank you’ and ‘yours truly,’” I suggested, trying to push it home.

Carly probably snickered at me inside. In hindsight, I think she was looking for a
way to strike an empathetic chord. Finally, Carly added the last three sentences to
her request.

Dear Ellen,

My name is Carly. I am from Toronto.

I have autism. I can’t talk but I can spell on my computer.

It is hard for me to do things like sit still or play a game.

It’s okay sometimes, but I do get sad and frustrated.

I want to be like other girls.

I like you because you make funny sounds like me. I like when you dance and act silly.
You make me smile.

Howard told me we share the same birthday and I only know one other person that has
the same birthday; she is my sister. I make a wish every year and it never comes true.
If I tell you maybe it will.

My dream one day is to talk but I don’t know if I will be able to.

So my birthday wish is for you, Ellen, to read my speech and be my voice at my party.

I’m sure you had a dream of being an actor and someone helped you out.

So can you help me out?

Love your fan,

Carly

Carly had mastered the centuries-old art of guilt and manipulation as she spelled
out the closing sentiment of her letter. We marveled at how Carly was able to draw
Ellen’s experience into the situation to create empathy. “That’s incredibly mature
and sophisticated,” I said, as much to myself as to Carly.

And the salutation was the first of what would become a signature trait of Carly’s
letter writing: personalized sign-offs, each one tailored to the theme of her letter.
“Where did she learn the concept of being a ‘fan’ or how to write a letter like this?”
I asked Howard rhetorically.

In the coming months, this would be a recurring theme in our relationship. Carly would
dribble out small amounts of knowledge or observations, crack jokes and tease us.
We hypothesized that although she didn’t sit and watch TV or read newspapers, she
likely picked up information. She seemed to take in information around her as if by
osmosis. When I asked her directly about how she knew
the definition of certain words, or where she had heard about various current events
such as a particular politician’s position on government-funded autism services, her
only response was a coy,
“I know stuff. Duh.”
There appeared to be an entire world spinning inside Carly that we had yet to discover—a
world of imaginative thought far beyond the controlled, adult-managed one she lived
in.

Although I wanted to encourage Carly in her goal of having Ellen read the speech,
I had no expectations of being able to get the letter to Ellen—certainly not in the
two months that remained before Carly’s bat mitzvah.

Tammy was the one who was driven to bring about a miracle. As a friend once told her,
“Some people don’t take no for an answer. But you never even get no for an answer.”
With Barb’s continual encouragement, Tammy engaged for battle—a compulsive warrior.

Carly worked on her speech and Tammy navigated the six degrees of separation that
apparently linked us to Ellen DeGeneres. A search on Google led her to the name of
Ellen’s agent at ICM, a major talent agency in LA. Charles and Richelle Bolton, close
friends of ours from graduate school, were living in Los Angeles and contacted someone
they knew who also worked at ICM. “He’s Jewish, too,” Tammy joked. “He’ll understand
guilt. At least he’ll know what a bat mitzvah is.” By the time my wife’s sleuthing
was complete, we had contacted Ellen’s agent, her manager, producer, and personal
assistant. I think someone who worked for me at john st. even put in a call to Ellen’s
makeup artist, whom she somehow knew through the industry. Initial responses were
not encouraging (“We can offer you a signed photograph of Ms. DeGeneres,” said Ellen’s
manager). But compromise is the enemy of success, and Tammy continued emailing her
newfound contacts and eventually, we successfully got Carly’s letter through to Ellen.

By that time, several other leads we explored had also mentioned the request to Ellen
and her staff. In an effort to persuade them, we
got Carly to relinquish a draft copy of the “secret speech” to Tammy and me, so we
could attach it to her letter. We thought if they could get to know Carly and the
amazing strides she had made, perhaps we could move them as much as we were moved
by Carly’s unique voice and spirit.

Over the coming weeks, we would get occasional emails back from Ellen’s agent. It
might happen. It might not happen. It probably will happen. “My daughter told me I
had to make it work. It’s a chance ‘to do good,’” he told us. All the while we kept
this from Carly. Her life was a string of disappointments; she didn’t need another.
Maybe she would even forget about it, I deluded myself.

On a cold, dark evening in December, I received a call on my cell as I drove up Avenue
Road from my office. Christmas lights adorned the shops and restaurants lining the
city street. Traffic crawled. “Ellen will read Carly’s speech on video,” said Ellen’s
personal assistant, Craig. “She’ll do it after she records her Christmas show, and
we’ll send you a DVD by the New Year. Will that be okay?”

I was stunned. What are the odds of this? I thought to myself. After thanking Craig
profusely, I had to ask: “Clearly, Ellen is a very kind person, but I’m sure she gets
thousands of requests. Why is she doing this?”

“She was very moved by Carly’s letter and speech. And I have to tell you, you have
quite the PR machine going there.” He chuckled warmly. “We were approached by three
or four people about this. No matter which way we turned, Carly’s name was coming
at us from all sides.”

While I knew it was the confluence of strength, a group of strangers’ and friends’
desire to do good, I was equally becoming aware of the power of Carly’s words to motivate
people to action.

I called Tammy on my cell. “How should we tell Carly?” I asked.

“Let’s take her out to Demitri’s after dinner,” Tammy suggested, referring to a dessert
place near our house that Carly loved.

Later, as Howard, Tammy, and I sat around a table sharing an enormous slice of chocolate
cake, we announced to Carly that Ellen had agreed to her request. Ellen would be her
voice at the bat mitzvah. I had no expectations of heartfelt reaction, as Carly’s
face does not brighten and she will seldom spontaneously hug. With no way to vocalize
her feelings, Carly is impossible to read. At best, she will look down and the slightest
smile—almost a knowing look—will briefly cross her face.

The only way to understand what Carly is thinking is to persuade her to put it down
in words. Her body fails to communicate what her brain thinks. “Tomorrow you need
to write a thank-you note, and we’ll send it to Ellen’s assistant,” Tammy told her.