Carly’s Voice (25 page)

Carly often speaks in non sequiturs. Perhaps it is nothing more than the speed bumps
caused by the slow pace of her typing; her mind already racing well ahead of her fingers.
Or perhaps the logic in her mind, clear as an Arizona sky, looks befuddled to us.
Yet another mystery I hoped to solve one day.

“Of course they love you, but do they know all this stuff?” Mel asked, confused.

“No.”

“Why not?”

“They don’t ask.”

“I think Mom, Dad, Howard, and Barb would love to talk to you about this stuff. Maybe
we can all work together to get a professor to teach you new things. Or how about
having a philosophical conversation with Dad about something in history or something
about psychology?”

“That would be awesome.”

“Would you ever want to start a book club with your family and friends? You read a
book and discuss the book over dinner and drinks?”

I smiled reading this, picturing Carly holding court, a martini in one hand.

“Yes,”
she replied.

As Carly continued to mature, a fog seemed to be lifting. We took every opportunity
to ask her about what was happening inside of her; what motivated the outbursts and
perpetual motion. It had been something she was either unwilling or unable to articulate,
though we continually probed. Just maybe if she gave us a little more insight, we
would find something we had missed in all the years of exploration.

In one of their conversations, when Barb inquired why children with autism don’t look
people in the eye and whether they should be encouraged to, Carly replied,
“No. We see different than everyone else.
We take pictures in our heads like a camera. It’s like filling a camera with too many
pictures. It gets overwhelming.”

At the end of each of their sessions—even before leaving our house—Barb took out her
own laptop and summarized the conversations and progress they had made. I read her
emails off my BlackBerry while stopped at red lights on the drive home. Today that’s
a ticketable offense, but one that’s worth the fine. These notes were like an addictive
mystery that I couldn’t put down—even at the risk of a car accident.

One particularly intriguing session, we learned how it was that Carly processed information.
Barb had been telling Carly about a problem she was having with one of her other young
clients. She said the boy was a bright five-year-old with autism. He frequently made
noises and repeated phrases or words over and over—words he had picked up from watching
cartoons.

“I find it very difficult to work with him when he stims. Carly, do you have any ideas
how to stop this?”

“That’s not stimming,”
Carly corrected Barb.
“People mix that up with stims but it’s not. Stims are when we focus on sensory output
to block out sensory input.”

Typically,
stims
referred to the repetitive behavior people with autism exhibit—flapping hands, wriggling
fingers, or fiddling with an object.

“Isn’t that what he is doing—focusing on his own talking ‘output’ to block out my
‘input,’ if I am asking him to do something he finds hard?” Barb pursued. She was
stunned by Carly’s clarity and sophisticated insight, and intrigued to learn—the master
from the pupil.

“Knowing myself—and again remember I don’t talk, you can’t just talk as a stim. It
has to be more engaging.”

“I don’t understand. Can you explain?” asked Barb.

Howard interjected, “When you were making noises just now,
was that a stim?” Carly had been making a humming sound while chewing her potato chips.

“I was making noise and changing the sound with my finger in my ear to block out audio
input from the crunching of the chip.”

“So back to my client, what is he doing if it’s not stimming, and what can I do to
help him?”

“He is audio filtering.”

Barb and Howard looked at Carly dumbstruck.

“What is he filtering, and what should I do about it?” Barb was genuinely intrigued,
as if consulting with a famed doctor.

“We take in over a hundred sounds a minute. We have a hard time processing all the
sounds at once so it comes out later as a broken record.”

“That’s so interesting!” exclaimed Barb. “Is he listening while doing this?”

Carly nodded yes.

“How do I get him to stop?”

“Something is setting it off. Smells. Hairstyle. clothes or sounds can be a trigger,”
responded Carly.

“But what can I do?” continued Barb.

“How can you help someone when you are to stubborn to listen?”
teased Carly.

“That’s not fair. I am here to listen. If I don’t understand something, it’s not fair
to say that.” She couldn’t see Carly’s face as she was looking toward Howard, but
he said she said this all with one of her mischievous smiles.

“It could [be] something you are saying or making him do that acts as trigger. It’s
the method that reverberates the sentence or words in his head and to filter the meaning
he repeats it over and over,”
Carly replied somewhat cryptically. It seemed that Carly’s thoughts raced ahead of
her ability to type, and some of the words in the sentence were missing. Her paragraph
was like Swiss cheese—we grasped the gist of her meaning, but the holes left us wanting
a bit more.

“If I can make out what he is saying, would it help if I explain what it means? Would
it stop then?” Barb asked.

“He has to do it himself so he could learn how to filter,”
Carly responded, and then signed she was done speaking.

We were astonished by how articulate Carly was—using simple metaphors to help us
neurotypicals
understand her condition. “It’s just brilliant,” Barb remarked, with a sense of relief.
The observation of how Carly was absorbing information—taking in thousands of sounds
and images at once—explained how she was gathering so much information. Newspapers
are always spread over our kitchen table; the television or radio often left on. While
it may not look as if she were perusing the way most of us do, Carly was reading much
the same way a photocopier snaps a picture of the text and then stores it for future
processing. Sounds would pour into her head and be sorted and filed for meaning at
some later date. Some months later she pointed out that information could sit in an
unprocessed state for hours, days, or weeks before she finally understood it and could
respond—like an enormous pile of papers sitting on a desk, waiting to be filed.

Carly’s imagination and wit would become other cornerstones of her persona. Humor,
we are told, requires intelligence, so we were both surprised and encouraged when
she began peppering her conversations with little jokes, jabs, and sarcasm. To celebrate
Matthew’s eighteenth birthday, Carly wrote him the following note:

Dear Matthew,

I want to wish you a happy birthday. Every one tells me that you love me and care
about me. So because I love you and don’t want to see you without any friends or a
girlfriend, I have to tell you something. You smell.

But that’s ok because I, your caring sister, have gotten you a present that will fix
that. Now maybe you wont need to have any imaginary friends.

Naaaaaa. It’s you I’m talking about.

But you will smell better.

Your loving, caring and popular sister,

Carly

Carly had Howard take her to the store where she picked out bottles of a popular brand
of body spray, cologne, and hair products. Matthew took it all in stride.

In addition to her sense of humor, Carly had a well-developed imagination. Late in
2007, completely of her own volition, Carly had started writing a piece of fiction
called
The Elephant Princess
. One afternoon with Howard, she told him,
“I want to work on a special project.”
Without any further explanation, she launched into a Disney-like tale about a girl,
a gecko, and a cast of anthropomorphic characters that resembled people in her life.

The inspiration for her creative explosion came from our nightly ritual of reading
fantasy fiction, such as Angie Sage’s
Flyte
and
Magyk.
Cuddling up in Carly’s big bed with a book was our favorite time of the day. I had
asked her why she preferred these books over others in the genre, such as the Harry
Potter series.

“I like them because they’re about a girl who’s a princess. She’s like me,”
Carly answered.

“Oh, you’re a princess?” I teased. If she could have, she would have shot me a chilling
glance, I’m sure. Though as we got to know Carly more, it was no surprise that she
would identify with a young heroine that had to rage against strong forces to succeed.

One evening, around the same time, I had been pondering with Howard why it was that
Carly was still having trouble sleeping.
“She takes enough medicine to knock out an elephant,” I exclaimed. Howard shook his
head in perplexed agreement. Carly was sitting in the den, well out of earshot. Or
so I supposed.

The next day, while at work, Carly texted me,
“Why did you call me an elephant?”
I had no idea what she was talking about, as the question came out of context.

“What does she mean, Howard?” I typed back.

I could almost hear Howard laughing at the computer. “You said last night that she
took enough medicine to knock out an elephant. She must have heard you.”

In addition to Carly’s hyper-visual acuity, we were coming to understand that she
was gifted with what I termed
peripheral hearing
. She was able to pick up on conversations several rooms away, even when it appeared
that she was not paying attention or was engaged in another activity.

Carly had put the two thoughts together, the elephant and the princess, and a few
days later began her novella. Through the end of 2007 and into 2008, Carly worked
on her story a few times a week. It didn’t really matter if we encouraged her or not;
she only did it on her terms. She would sit at the computer and entire pages would
pour out over the course of an afternoon. She never needed to go back and change words
or edit her thoughts. They were complete scenes and narrative, carefully plotted out.
Her writing was imaginative and witty, though sometimes her sentence structure was
so complex and lacking in punctuation that I had to reread passages a few times to
fully grasp the idea.

I want you to close your eyes and imagine a girl all alone in the middle of the jungle.

All she can hear are the sounds of the animals.

But what she does not know is that the sounds aren’t just random sounds.

In fact the animals are talking to each other.

People think that a lion’s roar is its way to scare you.

But let me tell you from experience that a roar is just not a ROAR.

Actually a roar can mean many things depending on the tone.

I think that humankind is just oblivious to things that have been around for many
years.

I think humans are such silly creatures.

See us animals are much smarter because we understand what is going on around us.

But that’s another story for another day. I’m sorry I am just rambling on.

Ok.

So I think I was telling you that she heard sounds all around her.

They kept on getting closer and closer. Little did the girl know all us animals were
talking about her.

Sorry for interrupting again, but I think I should tell you that every thousand years
us animals need to pick the ruler of the world. And you thought we sit and do nothing
all day. Well ok sorry for barging in again.

As all the animals got closer we all saw the same thing. That silly old owl that was
supposed to be so smart, brought a human to be the next ruler. Not just a human but
a twelve year old girl.

“No no no this cant be,” said a voice in the group.

We all knew who said it. Arthur was the oldest and most feared animal in the world.

His voice was so deep it could make mountains crumble to the ground. All the animals
respected what he has to say.

The moon shined in a straight line on the girl’s head like a flash light beam. She
stood in between four drooping old trees. She saw all the animals getting closer and
closer to her and she started to tremble. Arthur walked towards the frightened little
girl.

We all knew she saw him when her trembling stopped. In fact every thing stopped.

Her chest stopped moving. it was like watching a wall. Well, Arthur started to circle
her

Arthur’s head turned to Hoowie the owl. His mouth opened and he said, “You stupid
owl. This is a puny little girl.”

The girl moved her head slowly and said, “Who are you calling puny?”

Every one around her was in shock. See as you know humans never, and I mean never,
are able to understand what we say. And here is a human that can.

Arthur stared into her eyes. He turned to all of us not with a look of shock like
what we all had on are face but with a look of satisfaction. He said in his deep voice,
“The prophecy has come true.

We were to understand that the narrator, the gecko, was Carly, and the character of
the princess was based on Taryn. Through the tale they are inextricably intertwined,
helping and scolding one another just as sisters do. We all got parts in Carly’s play.
I am a lion, fierce king of the jungle. Blush. Howard is Hoowie the wise owl. Barb,
an adoptive mother of the princess. Matthew received his Carly bashing, showing up
as the princess’s nemesis, an ugly troll. And Tammy is Tamma, the elephant mother
of the human princess.
If it weren’t so funny, Tammy would be deeply offended. When I asked Carly how her
writing was going once, she said,
“good. Tamma dies by exploding cell phone. Just kidding.”
Tammy
does
spend an inordinate amount of time on her cell, so there is some truth in the jest.