Carly’s Voice (30 page)

Travel with Carly still stirred enormous anxiety in me. I had a flashback to the trip
a year and a half earlier when Tammy, Taryn, Carly, and I had gone to New York to
see a neurologist for Carly. Taryn and Tammy stayed on in the city for a few days
and I flew back to Toronto alone with Carly. Although it was only a one-hour plane
ride, the ordeal of customs, security, the flight, and luggage claim with Carly’s
unpredictable behavior made me so tense I wasn’t eager for a repeat experience. Could
a week in LA actually be called vacation? But Howard agreed to join us and as our
Carly whisperer, he had an enormous calming effect.

In fact, the flight was uneventful with Howard keeping Carly occupied with her iTouch,
games, and snacks. One of her compulsive actions—a means of calming her inner turmoil—was
to shred paper. During the four-hour flight she pulverized three magazines. But we
made it. Carly later told us she worked extra hard to hold her outbursts in check
and to remain calm because she wanted to prove she was capable. She was particularly
motivated because our friend Charles had helped us to get tickets to Ellen’s show
and the opportunity to meet her briefly before the taping. This vacation was not only
a chance for Carly to be part of her family, but a chance to meet her hero.

We checked into the hotel and to our surprise, the two rooms overlooking the parking
lot had been upgraded to a suite the size of our house. Charles’s network of friends
seemed to have no bounds; we learned that the hotel’s general manager was a friend,
and he went all out to make us feel welcome.

We settled into the hotel and the kids went for a swim in the pool with Howard. Tammy
and I planned out the week’s agenda. We had to balance squeezing in as much sightseeing
and socializing as
possible with the unknown of Carly’s ability to handle it all. The yin and yang of
life with Carly follows us everywhere.

Yet we had underestimated Carly, again. Through the week, she rose to the occasion.
At Charles and Richelle’s, where we went for dinner, she played hangman on her computer
with Matthew, Taryn, and the Boltons’ kids. She was in good spirits as we drove around
the city and through the hills and canyons that characterize LA, later commenting,
“mom drove around and around so much I thought I’d throw up.”
Our nights were uninterrupted and we were able to eat in restaurants without hasty
exits or excuses.

During the week, we went to visit a small school started by a woman Tammy had met
on a previous trip to LA. Patricia and her husband had been actively involved in autism
advocacy since their son was diagnosed. The school consisted of four students and
was run out of a carriage house adjacent to the family’s home. Carly and Howard spent
the afternoon with them, going on a field trip to the Museum of Contemporary Art.

Later that evening, Howard said, “Carly did great. She particularly seemed to like
Lichtenstein and stood staring at his paintings for a long time.”

I wondered how Carly’s eyes might process the unique style of the artist: his use
of tiny black dots in combination with comic book images. Did she view art the same
way as I did? Her ability to absorb visual information was so different, perhaps she
saw color and images uniquely, too?

“I see them in streaming colour and flashing images. Duh,”
she scoffed at me.

Howard smiled at her and I realized I was the butt of her joke.

“She got along great with the other kids,” he said. “She was writing with them all
afternoon.”

Howard showed me a picture he’d taken of Carly sitting on a couch, her arm around
a teenage girl’s shoulder. At home Carly had
no peers with a similar juxtaposition of talent and challenge. She had no kindred
spirit with whom she could commiserate or even hang out, and I wondered why this was
so. Was it that these kids were so unique? Or was it that kids with Carly’s diagnosis
in Toronto just don’t typically receive the depth of therapy that she did and therefore
never discover their voices? In LA, autism seemed more mainstream to us and the range
of services more abundant. Carly finally had friends, but sadly they lived three thousand
miles away from us and their continued connection would have to be online.

The highlight of the trip, particularly for Carly, was our visit with Ellen before
joining the audience for her show. Carly sat on a couch next to Howard, all of us
crowded into Ellen’s small dressing room. The room was packed with clothing and a
makeup table. Ellen’s Guitar Hero game stood off to the side.

Ellen greeted us all warmly and introduced us to her mom, who attended most of Ellen’s
shows. Carly and Ellen sat on her couch, with Howard off to the side, while the rest
of us attempted to stay out of the way in the snug room.

Carly had prepared questions for Ellen in advance in case her anxiety prevented her
from typing. Carly was curious about what Ellen did in her time off and what it was
like to be a celebrity. Ellen graciously answered all of Carly’s questions, commenting
that it was a pleasure not to be the one asking them for a change. I observed Matthew
and Taryn watching their sister with an amused pride. As we shuffled out to our seats,
Ellen gave Carly a hug, and invited her to come visit again. “You’re an incredible
woman, Carly,” she said.

Our meeting with Ellen felt less like a brush with celebrity and more like closing
a loop. Carly wanted to be able to thank Ellen face-to-face for “lending me her voice,”
as she described it. The reading of the speech was a very personal act and we all
felt an enormous debt of gratitude, something that could not be paid off in an email.

We celebrated the day by having dinner at the Polo Lounge, an iconic restaurant in
Beverly Hills. I thought we might be pushing our luck with Carly’s ability to hold
it together after a tiring day, but she seemed to be holding court.

“What would the lady like to order?” the waiter asked. I sensed he was from an era
when being a waiter was a cultured art form and smiled at the respect he paid my daughter.

“Chicken strips and salad,” Howard replied for her, and Carly’s right hand went to
cover her ear as she looked down and smiled.

Sitting at the large round table with my family, live music playing in the background,
and the sun fading through the windows overlooking the shaded terrace, I realized
I was actually having
fun
. Too often, events were to be gotten through—an accomplishment if completed without
disaster. But here we all sat, enjoying ourselves. Carly’s netbook computer lay open
to the side of her place setting. Though she was too tired to write further that night,
she was clearly happy.

I had given up hope that we could go away as a clan and all get something out of it
other than a black eye. The logistics, squabbling, and feeling of walking on the eggshells
of Carly’s composure negated the pleasure of travel. With Howard’s help, however,
and years of waiting, Matthew and Taryn were finally getting their sister back and
I was getting a complete family.

The trip, in fact the entire previous year, was as transformative for me as it was
for Carly. I was coming to the recognition that Carly was a person independent of
me. Dependent in need perhaps, but not in spirit. She was capable of having relationships
and dreams, bonding with people and places outside her circumscribed world, and feeling
pride and joy in doing so. As we headed back to Toronto, I was glad Tammy had convinced
me to make the journey. It was easy to assume the worst and live within tight boundaries.
Maybe LA, a city known more for eating dreams than making
them come true, wasn’t so bad after all. Our experience with Ellen was anything but
superficial. Our friends were more welcoming and generous than we could have imagined.
And we found a tight-knit community of families with similar challenges to ours who
were open to new friendships. Maybe LA really was a city of angels.

Dear Ellen,

I am writing you because I need to give you a big thank you.

I know what you are thinking. Why am I thanking you?

A few weeks ago on your show you were talking to Oprah on Skype and she told you that
you were going to be on the cover of O. That’s very cool, by the way. Congratulations.

But that’s not why I am thanking you. It’s what you said after she told you that you
were going to be on. You said set goals for yourself, that you can do any thing if
you just try.

Well I took your advice.

I set two goals for myself. One was to be heard and the other was to help kids that
are in the same boat that I was in to get their inner voices out. So again I have
to thank you.

I remembered you saying that if you have something important to say, say it on CNN.
So I looked for the oldest person there and I found him . . . Larry King. I wrote
him a letter but Barb and Howard told me he gets thousands of letters a day. And if
he is really that old I did not know how much time I had. I was stuck at that point
so I thought I would ask all my friends to help. I knew if lots of people supported
me, he would have to listen. So I started a petition to get on his show. I figured
it would be something you would do but your petition would be probably to ban glitter.
But mine’s just as good, I think.

My goal was to get 5000 signatures in two weeks. Barb did not think I could do it.
She even told me to lower it. Don’t tell her but
I was going to listen to her. But I had a small feeling I could do it and you always
go big. Why couldn’t I?

After the first day and I went over my 1000 mark, I knew I was going to make it. By
the third day I was at 3200 and Larry was knocking, well sorry, calling. I got to
go on the show and I was even on with your friend Jenny McCarthy. I wrote a small
message an hour before the show started and he played it on the show.

It was not the way I wanted to do it but it would have taken me way too long to write
while the show was live. I still want to do a pre-taped show with him, so people can
see me type.

I have to say I am sorry I stole one of your lines. I hope you don’t mind, the one
that you said people wont listen till some one stands up. Well I think Larry really
liked it, so please don’t tell him I got it from you. I really just want to say thank
you for making me believe in me.

Your autistic late night guest,

Carly

Oh some one asked if I would do Oprah show and between me and you, you’re the better
one. Don’t tell Oprah.

Q:
Carly, tell me about some of your favorite things? What kinds of books do you like?
What kind of music? TV shows? Why?

A:
I love food. I like eating chips because they taste so good. It takes a lot out of
me to read a book but i like when someone reads it for me. I like listening to Septimus
Heap. It’s fun because i can picture it all in my head from what Septimus looks like
to the castle gates. I love listening to music i like songs that i can rock back and
forth to. I like kanye west. I like tv but it’s hard for me to sit in front of it
some times. It’s too overwhelming. I like to sit to the side of it and just listen.
I love watching the Ellen Show. She makes lots of noises and makes me forget that
I’m autistic some times.

—From a conversation with the producer of ABC’s
20/20

As I’ve said, Tammy is a news junkie. For her, news is something to be scoured over,
clipped, and responded to. One Sunday in late January 2008, she was reading an article
in
The New York Times
about
girls with autism. The article explained that not only was the incidence of the disorder
lower among girls than boys, there were unique aspects and abilities among females
with autism. Unlike boys, the research noted, girls may have a greater sense of empathy
and emotion, a concept known as “theory of mind.”

“So this could explain why Carly seems so different from some of the other kids we
know with autism,” she said. “They’re all boys.”

Over the years, Tammy had tracked stories and research about autism. But this one
stood out because it specifically addressed girls, who seemed to be the forgotten
afflicted. One reporter whom she felt did an excellent job at advancing the understanding
of the condition was a woman named Avis Favaro, the medical reporter for one of Canada’s
national television networks. Tammy had done an interview with Avis many years before,
when Carly was four and we, along with many other families, were locked in a battle
with the government for additional funding for autism services. So when Tammy read
this pivotal article, she promptly called Avis to see if she would be interested in
exploring the differences further.