Carly’s Voice (44 page)

I was asked if I had to pick another disability other then autism to be what would
it be?

My answer to that is: I was once told a blind man wanted to be deaf and a deaf man
wanted to be blind. But its always better to be your self.

—Carly, May 2009

Carly’s experiment—attending a class for gifted students at a local high school during
the 2009/2010 school year—had been largely successful. Although it was a few months
by the time Carly was successfully registered, she had proven to the school and to
herself that she could sit reasonably quietly and complete several of the assignments.
More importantly, she won the hearts of her teachers and fellow students. Rather than
return to Carlton in the fall, Carly would be attending Western on a full-time basis.

Before our summer plans got under way, Carly was invited to introduce Temple Grandin
at a conference being held at a university an hour north of Toronto. Dr. Grandin was
diagnosed with autism as a child in the 1950s, when it was generally accepted that
those afflicted with ASD would spend their lives in institutions. Through her mother’s
dedication and her own creative problem solving, Dr. Grandin progressed through school,
completed a Ph.D., and embarked upon a career in animal husbandry. Dr. Grandin was
a vocal advocate for those living with autism and sensory integration issues, and
she had been invited to speak at the event slated for late June, the weekend before
Toronto hosted the G20 Summit.

Carly confessed to being very nervous about the task. Temple was a hero, and introducing
a hero is a daunting task. With only two weeks to prepare the opening remarks, she
wore the pressure like a lead blanket. Each time Carly sat down to write the address,
she would close the computer before Howard could save her work, intentionally deleting
it.

“It was really good,” he said. “But I guess she doesn’t think it’s good enough.”

We encouraged her to just put it down and we could edit it later. Eventually Carly
was able to finish her speech and we saved it before she could deliberate further.
Her mood seemed to brighten and her anxiety lifted.

Days before the event, she joked on Facebook:

So when i was on 20/20 they had a thing called a trailer that they ran over and over.
It was something like ‘Autistic nonverbal girl with what seemed like no hope found
her inner voice and now has a bright future. tune in at eleven’. So I decided to write
a real one for this Thursday. I am about to post it so tell me what you think of it.
‘This Thursday great political minds are going to sit in a room and talk about absolutely
nothing at the G20 summit. One hour away two autistic ladies are going to be presenting
and changing the way people view autism. Temple Grandin and Me, Carly Fleischmann,
this Thursday. Straight from the horses mouths.

Carly had now made several presentations of this nature—though none as auspicious—yet
she still got very nervous about her ability to control her behaviors. She needn’t
have worried. Tammy and I sat in the front row and watched Carly seated on the dais
with Howard to her right. Mustering all of her energy, she sat calmly, swaying slightly,
her right hand on her ear—a gesture she would eventually tell us helps her alter the
sounds around her. The digitized voice from her computer echoed through the university
gymnasium. Carly’s written text scrolled across two enormous screens for the audience
of eight hundred people:

For those of you who don’t know me my name is Carly Fleischmann. I am a fifteen year
old autistic girl who, as you can see and hear, has found her inner voice. I feel
honoured and privileged to be introducing a woman that really needs no introduction,
but don’t tell her that or I might be out of a job. Rumour has it I’m getting paid
in potato chips. Yum yum.

Let me go back to being serious for a moment. I have been doing a lot of research
to prepare for Temple’s introduction and I couldn’t believe similarities we both seem
to have. Just like me and many children with autism, Temple’s mother sat in the doctor’s
office when Temple was a little girl and she was told that Temple had autism. Temple’s
mother asked what caused the autism. The doctor responded with a response that many
doctors told mothers up until 20 years ago. He looked right into Temple’s mother’s
eyes and said it is caused from bad parenting and lack of love from the mother. Temple,
like me, was nonverbal at the time and her mother, like my mother, could not accept
the fact that her child would never be able to communicate. Temple, from that point
on, went through an intense therapy program. It was not ABA but some people would
argue that it could be considered the first ABA program ever made.

With intense speech therapy, a nanny working non-stop on social skills, and a mother
with a will to educate her daughter, Temple was able to communicate. Even though Temple
was able to talk, it did not mean the fight for her was over. Temple, like me, was
given an opportunity to attend school but challenges and skepticism lay around every
corner. Temple was able to do what a lot of doctors and educators thought would be
impossible. She graduated school with a PhD in animal science. She has gone on to
write books on a variety of subjects including animals, social skills and of course,
autism.

Living with autism, myself, has been hard at times and the gains are great, but challenging
to get to. However, being able to see someone who is able to walk a mile in the shoes
I’m already wearing, gives me more than hope for myself and for the hundreds of thousands
following with, and behind me.

I have to be honest with all of you here today. I usually am able to write a speech
or a story in my head, and then type it out. However for this speech today, it has
been a hard process for me. I thought it was because of my autism but I realized it’s
my admiration for Temple Grandin that made it so difficult. A wise man once said to
dream of greatness is just the first step but actually attaining it is, like they
say on tv, priceless. Most children my age would say that they look up to pop stars,
reality tv stars, and sports stars but I’m proud to say the person I look up to is
Temple Grandin. So without further adieu the woman who really needed no introduction,
my idol, Temple Grandin.

I seem to hear Carly’s voice for the first time on each occasion I read what she has
created. It’s been six years that she’s been writing and with each epistle, I’m still
left somewhat speechless myself. Carly and Howard stepped down from the stage and
Temple made her presentation, but I was so busy playing and replaying Carly’s
introduction in my head that I only half-listened to Dr. Grandin’s speech.

Carly was finding the perfect opportunities to share her message. Technology helped
ease the burden of communicating—software with word prediction, more sophisticated
image-based programs, the iTouch, and then the iPad all improved Carly’s ability to
converse. With the growth of social media channels, Carly was able to reach people
in ways that would have been impossible just five years earlier.

And the public wanted to be reached. The media’s interest in autism was growing, sparked
by startling statistics of one in 110 children being diagnosed with ASD every year.
The condition was being likened to an epidemic.

It was through this confluence of technology and public interest that we came to meet
Holly Robinson Peete. She and her husband, ex-NFLer Rodney Peete, had started a foundation
known as HollyRod that provides funding and services to those affected by Parkinson’s
disease and autism. Their son RJ was diagnosed with autism at age two and Holly had
become a passionate spokesperson for the cause. Holly began following Carly on Twitter
and the two had exchanged a few emails. On one of our trips to LA, we met with Holly
and her son. We had lunch at an outdoor market on the kind of bright afternoon that
reminds you why everyone in LA has a smile. Holly was passionate about her work at
HollyRod and completely down-to-earth.

Shortly before Carly was to introduce Temple Grandin, we received a call from the
executive director of HollyRod, informing us that Carly had been selected to receive
a Youth Champion award from the foundation at their annual gala, DesignCare. The event
was to be held in July, just before Carly was to leave for sports camp. Tammy graciously
thanked them and said she would see if there were any way to attend, but she wasn’t
optimistic. One trip to LA
with Carly every year was about as much logistical juggling as she could handle.

Tammy and Carly checked out the DesignCare website later that evening and realized
the magnitude of the honor. The annual event draws hundreds of donors. “Carly
could
go straight to camp from LA if Sheila comes with us,” Tammy said, referring to the
young woman who was to be Carly’s aide at camp that summer.

I reflected on the effort it would take to coordinate and make the trip. Wasn’t summer
supposed to be a break? On the other hand, I knew Carly felt honored—as did we—for
the recognition. Furthermore, I looked forward to hearing the acceptance speech Carly
would inevitably have to write. Her desire to be a voice for those who couldn’t communicate
combined with her unfailing perfectionism resulted in an eye-opening experience each
time she undertook such an effort. I was getting to understand and appreciate Carly
more from the writing she did for strangers than in all the conversations we had and
all the sessions with Barb and Howard. I knew many families with children living with
autism who never heard meaningful language from their kids. I considered us fortunate
in our misfortune; although Carly’s life was a daily battle, her voice was a gift.

“So, let’s do it,” I exhaled, somewhere between a sigh and a statement of resolve.
Missing opportunities such as this only breeds regret later.

Taryn would be at camp. Matthew, who was entering his junior year of university, had
to stay in Toronto to work at his summer job. He was doing research in a psychology
lab at the Hospital for Sick Children. Relatively speaking, Tammy, Sheila, Carly,
and I were a small crew to transport.

During the flight, Sheila was able to calmly talk Carly through one bout of bleating,
back arching, and head banging in her seat. Even with Carly’s growing sense of self-awareness,
to this day she
cannot articulate what sets off these eruptions. Otherwise, the flight was uneventful,
though I didn’t dare relax until we arrived at the hotel. I don’t think I’ll ever
be totally calm when I travel with Carly.

Tired from the trip, everyone slept through the night. The next morning, we spent
our one free day walking by the beach in Santa Monica and Venice. Sheila had never
been to Los Angeles, but we wanted to keep the pace calm and save our energy for the
event the next day. At Holly’s suggestion we stopped by the venue for the gala to
give Carly a chance to see where she would be sitting and to walk up on stage. Practice
doesn’t make perfect, but it does take the stress levels down just a notch. The event
was taking place at the estate of a prominent businessman and friend of Holly and
Rodney’s.

“The award show and entertainment is taking place on the tennis court,” the event
manager directed us. “It seats six hundred with room for a double stage and a runway
for the fashion show.”

I looked at Tammy, giving her a silent “holy crap” look. Sheila, Tammy, Carly, and
I found the section in which we would be seated and practiced walking up onto the
stage several times. Carly seemed calm, her stimming and noises almost nonexistent,
but my stomach tightened at the thought of everything that
could
go wrong in the few feet between our seats and the stage where we would stand to
accept the award.

Having cleared the hurdle of the rehearsal, we went over to our friends’ house to
hang out. Their son was also nonverbal and yet wrote beautifully using a keyboard.
He had sent Carly a poem about living with autism earlier that year. Tammy and I wondered
aloud why we couldn’t seem to find anyone similar to Carly in our city. Would Carly
have to move to LA to have friends?

The next day passed peacefully and quickly. Tammy ran out to buy a new pair of shoes,
feeling somewhat intimidated and under-accessorized by the magnitude of the event.
Sheila and I took Carly sightseeing, relaxed by the pool, and napped. My niece Sydney,
who
was in LA for the summer for an internship, joined us with her boyfriend, Ben. Getting
ready for the formal affair brought me back to my wedding day. The women were in one
hotel room blow-drying, nail painting, hair straightening, and getting dressed, while
Ben and I were in the other quickly putting on our suits and waiting impatiently.

When we arrived at the event, Carly, Sheila, Syd, and Ben found a quiet spot in the
garden where dinner was being served while Tammy and I wandered around the silent
auction and said hello to the handful of people we knew. I had hoped to gaze longingly
at Eva Longoria, who I heard was going to be there. I didn’t notice her until much
later in the evening, and by the time I realized it was her, my celebrity crush had
walked past.

As darkness fell, we were asked to make our way down the hill to the tennis courts,
which were now fully festooned for the entertainment and award show. Carly’s award
was to be one of the first of the six awards being given out, and I calculated how
we might make a run for the exit immediately after if she couldn’t hold it together
for the rest of the evening.

Just before Carly was called up to accept the award, a short video about her was played.
It was neither melodramatic nor sugarcoated, but seeing the film the production company
had artfully edited using our home video, family pictures, and excerpts from the
20/20
segment had a jarring effect on me. In reality, Carly’s life had come together in
small increments over the past fifteen years like a mosaic, one tiny tile at a time.
All within three or four minutes, her struggles, her breakthrough, and her dream of
being a voice to autism all played out. I felt as if I were a witness to my existence,
as were the hundreds of strangers sitting around me. I reached over to hold Carly’s
hand and could tell she was focusing hard to keep her composure.