Carly’s Voice (32 page)

Question
Name:
greg
Address:
Erie, PA
Hi Carly, after years of not being able to speak, what does it mean to you to be able
to tell people what you want to say?

Answer
greg it feels so awesome to ask for things. So how do you speak?

Question
Name:
Ailyn
Address:
Miami, FL
Carly, I am so happy you found a way to communicate with those around you! My question
is what was it like dealing with autism and coping with the frustrations of not being
able to communicate your thoughts, feelings, desires and dislikes to your loved ones?

Answer
Ailyn it just sucks when I am alone. I feel very sad when mel goas away. I always
yell when I feel like people so don’t understand why I am sad.

Question
Name:
jerry and marieanne
Address:
Ridgefield, NJ
What can you suggest to me, as a teacher and a parent of young teens with autism,
to help them?

Answer
be patient. Try getting a computer. Give them chips when they type.

Question
Name:
pgsad
Address:
Chicago, IL
What one thing do you think my autistic child would want me to know about him?

Answer
I think he would want you to know that he knows more than you think he does. He is
lucky to have nice parents.

Question
Name:
mmfreedom
Address:
Omaha, NE
Do you believe the behavior therapy helped you and do you think intensive therapy
has anything to do with you not only finding a voice, but knowing what to say now
that you’ve found the means?

Answer
I think behavior therapy helped me. I believe that it allows me to sort my thoughts.
Unfortunately it can’t make me normal.

Question
Name:
Colleen
Address:
Saltspring, BC, Canada
Carly, you have come so far with all your success. Why do you think in the last year
or so you’ve come so far and are able to communicate with more and more people?

Answer
because first Howard believed then dina
[one of Carly’s therapists]
did. Believing helped. Then time went by and dina left and time went by. Then a miracle
happened you saw me type. Then my therapist Mel helped me forget that I’m autistic.
She treated me like I’m normal.

Although we didn’t appreciate it at the time, Carly was transforming. Subtly, she
was evolving from victim to spokesperson. We watched her intently typing out her advice,
amused by the sophistication of the questions people posed to her. “She’s becoming
the
autism diva,” Tammy joked. “I’m not sure people realize she’s just a kid.” After the
second broadcast, hundreds of questions continued to pour in from as far as India,
the UK, Australia, and Israel.

I printed out the pages of text, putting it into a binder for her. “Do you want to
hear more comments?” I asked her later that week.

“Eh ehss,” Carly approximated. It was one of the few words Carly could still vocalize.

Although challenged to connect with the people in her everyday life, Carly was beginning
to connect with millions around the world. People praised her, saying that in finding
her voice, she gave them hope that their children or relatives, afflicted with autism,
cerebral palsy, and numerous other conditions, would also find a way to reach out.

The emails continued unabated. How had Carly learned to write? Could she help them
with their child? What kind of music did she listen to? What kind of computer did
she use? Would she consider running for president? The two networks phoned to inquire
whether we’d be willing to film a longer-format piece. It would run on CTV’s news
magazine,
W5
, and ABC’s equivalent,
20/20
. “It’s up to you, Carly,” Tammy told her. “If it’s too much, say so.”

“Do the show,”
she replied.

It was agreed that ABC would be permitted to film all the footage for both networks
in order to be less intrusive. Their producer, Alan Goldberg, and medical correspondent,
John McKenzie, arrived with a film and sound crew. John spent two days interviewing
Carly, Tammy, some of Carly’s doctors, and me. Alan stayed a few days longer covering
additional events that routinely occur in our family such as outings, meals, and conversations.
It was like living with your mother-in-law for a week. But Carly seemed to connect
with Alan. He had a dry, sarcastic wit that fit Carly’s style. She responds well to
humor. Taryn and Matthew hid from view as best they could, self-conscious with the
camera. During the additional
interviews with Carly, Alan posed questions and Howard, Barb, or one of Carly’s other
therapists sat nearby to help keep her focused and on task. The ever-present bowl
of Lay’s potato chips remained just out of camera range.

“What do you dream about?” Alan asked, picking up on one of the questions Carly received
a number of times from viewers.

“I dream about a lot of things like boys. And food. I don’t always remember my dreams,
but I do like them.”

“Are you autistic in your dreams?” he continued, genuinely intrigued. We found Alan
took a personal interest in his approach. I felt like he was asking to satisfy his
own curiosity, not merely to get a performance for the camera. He became our accomplice
in helping us understand Carly; he asked so many questions for which we had never
been able to find the answers.

“Yes and no. Some of my dreams I can talk and do things that kids my age do. But some
I even have a hard time doing the things I can do when I’m awake.”

“We all have those dreams,” I assured her. “Like when you need to run but your legs
won’t move, or make a phone call but you can’t push the buttons.” Carly, it seems,
had the same type of anxiety dreams we all do.

“What do you mean when you say you ‘take over a thousand pictures of a person’s face
when I look at them’?” he asked. Carly had made this point a few times in recent months.

“It’s the way I describe how we see. All the images come at us at once. It is so overwhelming.
When I was young, I couldn’t stare directly at things. I looked out the corner of
my eye and even though you may think I wasn’t looking, I was,”
she answered.

“Where do you get so much information about pop culture? TV? Magazines? Fess up!”
Alan probed. We had all been amazed at Carly’s awareness of the relationship status
of movie stars, her knowledge of what musicians were at the top of the lists, and
even
an understanding of who was running for president in the coming fall’s election.

“I listen to every thing that’s going on around me,”
she started.
“If a TV is on and I am in another room, I still listen to it or if people are talking
I like to hear what they are saying even if they are not talking to me. Like I say
all the time, just because it does not look like I am paying attention does not mean
that’s the case.”

We were beginning to understand that Carly had more than peripheral vision. She had
peripheral
hearing
. Although she seldom sat quietly in front of the television, if it was on in the
other room, she was taking in the information and storing it away. Through the interviews
she was now having, first with CTV and now with Alan, we were beginning to get a much
deeper understanding of Carly’s range of knowledge and how she had acquired it. Every
day was like peeling back another layer of the onion. But rather than seeing more
onion, we saw a completely different person.

Alan wanted to get to know Carly as a young woman and not just as an autistic teenager.
“Tell me some of your favorite things,” Alan asked her. This had always been a barrier
for us. Most kids have favorite toys or hobbies. But Carly never had. Play was not
intuitive for her; learning how to play games or do puzzles was a significant part
of her early behavioral programming at school.

“I love food,”
she responded. We all smiled because Carly has a diminutive frame. Although strong
from years of rocking and constant motion, her legs and arms were still slim as saplings
and her body willowy.

“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 love listening to music. I like songs that I can rock back and forth to. I like
Kanye West, but I’m told he is not better than the Beatles,”
she joked, teasing Alan about
his
favorite musical group.
“I like TV but it’s hard for me to sit in front of it sometimes. 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 sometimes.”

As intrusive as the experience was, Carly was motivated and on a roll. We were learning
more about our own daughter in a few short days than we had in the past thirteen years.

“If you could go on a date with anyone, who would it be? Why? Where would you go?”
Alan wanted to know.

“Brad Pitt. Why? Are you silly? He is very, very hot. Even Barbara Walters agreed
with me,”
Carly replied, referring to an interview Barbara had conducted recently with the
movie star.
“I’d like to go to a restaurant. It’s easier for me because most restaurants are loud.
No one would look at me funny there.”

Alan smiled thoughtfully. Carly’s self-awareness was becoming one of her most moving
and endearing qualities.

Over the few days together, Alan observed Carly baking cookies with one of her therapists,
going to the mall with two young women who had worked with Carly in the past, having
a dinner at a Japanese restaurant with the family, and going through her daily routine
at home. He witnessed the sharp contrasts of Carly behaving like a typical teenage
girl, wanting to put on makeup and fix her hair—and then flopping on the floor and
banging her head for no visible reason. Although Tammy and I quietly discussed this
intrusion into Carly’s privacy during the latter, in the end we felt it was more important
for viewers to understand how hard her challenge is. We were concerned that the media
would romanticize Carly, filtering out the struggle and showing only the success.

Carly found her brush with stardom uplifting. The only phantom that would haunt her
for the next few years would be a handful of skeptics who didn’t believe that Carly
could in fact write for herself. Some believed her thoughts were being influenced
by the therapists who were assisting her. Some cynics lumped her in with a group of
people who had been tarred with the negative aspects of facilitated communication.
The news stories only showed short glimpses of Carly’s typing, which is an unfortunate
aspect of television journalism. Furthermore, a number of psychologists had staked
their careers on the false conclusions that those without speech and with severe autism
could not possess advanced intellect, creativity, and “theory of mind.” Carly debunked
their years of work and challenged their professional being. For us, we never paid
much attention to the naysayers, as Carly had frequently typed with accredited psychologists,
doctors, teachers, therapists, and family. We had complete confidence in our daughter,
as did all the professionals who worked with her. Although annoyed, we understood
the sense of doubt some might feel given the gap between the internal and external
Carly.

Alan was respectful and did his best to tell Carly’s story in the
20/20
segment as directly as was possible in the sound-bite style of television journalism.
After the segment aired, Carly sent Alan a thank-you letter and a volley of emails
ensued over the following years.

Dear Alan Goldberg,

My mother asked me to write you however, I don’t know who you are. See, I was on
20/20
and now I am famous and I have forgotten all my friends and family. I have let the
fame and fortune go straight to my head. But wouldn’t you if you were on a show like
20/20
? Every now and then things come back into my head. I think I might have had a smelly
brother, but I don’t remember.

I do have to say I did not like having to wait through a segment about people eating
soap to see me on
20/20.
But I am famous now so I can say that. I liked the show but think your boss is crazy.
The longer version is ten times better and I don’t look like such a wild child.

I really like your work and when Oprah offers me my own show you will be the first
person I offer a job to. You can get my coffee. Lol.

I miss you and just want to say thank you for doing everything you did.

Your famous super diva,
Carly Fleischmann

Oh, just to let you know, If you want to do a follow up that’s okay, but I want my
own trailer.

Sometimes it takes an outsider to help us see what’s right in front of us. As invasive
as it had been, I question how long it might have taken for us to embrace Carly for
who she was had we not pursued the story. And without the microphone and camera, I
wonder if Carly would have marshaled the inner strength she was beginning to show.