Carly’s Voice (41 page)

“What’s happening at school that would explain why you’re acting up so much?” Barb
asked Carly one afternoon, after about six months at Carlton.

“I can’t explain it,”
she replied.

“Well, what happens inside you when they ask you to answer a question?”

“They don’t. They ask me to spell “carly” or “dip” like a moron.”

In fact, the teachers had tried to get Carly engaged in school-work, but when she
wouldn’t type, they moved to simpler tasks, hoping it would help her overcome the
anxiety of typing in a new environment.

“I don’t even have to ask you how that makes you feel, but if you can tell us what
you would like us to do, maybe we can help fix this,” offered Barb.

“They moved me to a lower class and never really gave me a chance in room 7.”

“How did they not give you a chance!” interjected Howard. “You were in there for six
months and never spelled. How is that their fault?” The frustration was clearly wearing
on his nerves.

“I did well at The Learning Center just answering multiple choice boards. It was rare
I got a question wrong and Audrey saw me do it.”

“It isn’t just the lack of spelling. You were moved because your behaviors were disturbing
the other kids. They were all trying to do their work. That’s why they moved you into
the other classroom. And you are going to have to do more than multiple choice if
you want to convince them that you’re ready to fit into a mainstream high school,”
Howard told her. He wasn’t insensitive to her struggle, but he wanted her to take
some ownership of the situation.

“I don’t need to convince them. They’re treating me like I’m dumb. When was the last
time I had a legitimate pee accident? They are the real morons.”

“This tactic is not working for you, Carly,” Barb pointed out. “You have to have find
another way of communicating your frustration.”

“I am only as good as my environment and when I am treated low it’s hard to be anything
else. Don’t u read my tweets?”
she asked, referring to her more frequent use of the social media network. Carly
continued the irritating and circular discussion; her behavior was so Carly, but her
language was so teen.

“Part of growing up is to learn some self-restraint. If someone does something not
nice to me, I don’t lower myself to their level but try to rise above it and be the
best person I can be,” Barb counseled her. “Peeing in the classroom is not demonstrating
the best that you can be.”

“It’s funny that my dad can go on national TV,”
Carly huffed, referring to an interview I had done a few years earlier on ABC News,
“and says he believes in me but he doesn’t believe in me enough to let me pick my
own school. I just want a chance.”

She then closed her computer to shut down any further lecturing.

“She is such a diva,” Howard fumed.

We persevered. The rest of our family ecosystem was in relative balance, something
we had craved for years. Audrey, Carlton’s director, seemed almost apologetic for
their inability to connect with Carly, but we were just happy to have an environment
that was willing to keep trying and a school with the resources to counter Carly’s
jabs. Our family fell into a solid routine. Matthew was away in Halifax at university
and Taryn had entered high school only a few blocks away from our house. Carly’s school
was in the west end of the city, but Howard offered to come to the house in the mornings
and help get Carly ready for school and then drive her to Carlton. He could then spend
the day with his family and work on the plans for the
residential summer camp he was developing for young adults on the autism spectrum.
After school, Howard came back for Carly and worked with her at our home until nine
or ten, when she went to sleep. It was a long day for him, but he never seemed fatigued.

Our weekday morning routine was hectic, but probably no more so than in other homes
with teenage girls getting ready for school. With some guidance from Howard, Carly
would now wash and dress herself for school and was learning to prepare her own breakfast—significant
accomplishments.

Tammy would shuffle in bleary-eyed for coffee, and Taryn, who vacillated between chipper
and sullen in the manner of teenagers, would come downstairs, where she would have
to pass my daily wardrobe inspection. I often shot Tammy a look to see if she approved
of the amount of skin showing below Taryn’s neckline. Taryn and I had entered that
phase between a father and teenager that sometimes felt like radio silence. Like an
astronaut, I prayed we’d resume communication when the obstacle blocking our frequency
cleared the path.

“Is leftover shepherd’s pie okay for breakfast?” Taryn asked one morning, poking through
the fridge.

Now it was my turn to roll my eyes. But compared with our daughters’ childhood—a time
of flying food, banshee screams, and two hours of sleep—I was in heaven. I had begun
to view managing Carly’s life as a marathon, not a sprint. There would be times we
could surge with energy and change. But, there had to be periods of stasis, too. In
a life filled with so much turmoil, lack of change was refreshing. So while Carly
may have resented her predicament at Carlton, she would have to struggle through good
days and bad. My back hurt at the thought of exploring any other options.

Although school was not a high point, Carly was becoming more engaged in her role
as an autism spokesperson.

“Barb, should I go on Larry or Oprah?”
she asked. Early in March of 2009, Carly had gotten it into her head that she’d like
to be on
Larry King Live
. She had been getting messages on her Twitter page from people who thought she should
try to get on a talk show to inspire others with her story of finding her inner voice.
Not that Carly needed encouragement to dream lofty dreams anymore, but her followers
were fueling her ambition nonetheless.

“Which one would you prefer to be on, if you had a choice, Carly?”

“I want to do Larry.”

“Why Larry?” Barb mused. To her recollection, Carly had never expressed a real interest
in Larry King.

“He’s so old it takes him forever to ask a question. Even at the speed I type, I can
get my answer out before he speaks three words.”

Howard laughed his silent laugh, more of a nod, smile, and look of parental amazement.
Barb shook her head. “Carly, you are one funny kid.”

Carly wrote a note to Larry King that we passed on to one of his producers we had
come in contact with some months before. As would become a recurring theme, once Carly
gets something in her head, we all end up part of the plot. I also noted that Carly
seldom shared with us much of her experience with autism—despite our questioning.
However, when she wrote for strangers, or responded to questions on Facebook, she
shed light on mysterious and hidden aspects of her life. I was all for that.

Dear larry king

My name is carly grace fleischmann I just turned 14 years old and ever since I can
remember ive had autism. I am non-verbal but have found amazing way to communicate
my thoughts and needs.

CNN showed my story a year ago and so did other news stations.
Since then I have had an apifany [
sic
]. I hate or maybe a better word is dislike the way so called experts try to explain
the world of autism.

If a horse is sick you don’t ask a fish what’s wrong with the horse.

You go right to the horse mouth.

I want to do something I have never done before

I would like to sit down and educate you and your listeners on autism

I am not the fastest typer in the world but if you pre tape our interview you could
edit my response to match your questions

But I want people to know that know one is telling me what to say and I don’t have
a hand up my butt like a puppet I would love to answer any emails question your audience
might send

your true autism expert,
Carly fleischmann

We received a call from the show’s producer on April 3, the day Larry was covering
the topic of World Autism Awareness Day. “Would Carly like to participate in this
evening’s broadcast with Jenny McCarthy and several doctors who specialize in ASD?”
she wanted to know. “We’d set it up on Skype and she could be our autism expert and
guest blogger.”

We had about two hours for Carly to prepare a statement to be played via computer.
Carly would then stay online for the remainder of the show to answer questions that
audience members posted on Larry’s website, if she was able to sit and focus. It wasn’t
exactly the full-blown interview Carly had imagined, but with her growing desire to
share her experience more broadly with the world, it was a coup.

Racing home, we called Barb and asked her to come over. In particularly anxious situations,
it made Carly feel more relaxed to have both Howard and Barb at her side. She now
had just over an hour
to write a message about what she called the “truths and myths” of autism. We then
had to send it to the producer for vetting before airtime. The next few hours were
chaos—like a war room on election night. Howard and Barb sat with Carly while she
wrote in the dining room. Tammy and I worked out the logistics of using our computers
for a remote hook-up and did a video and sound check with the producers in Atlanta
and Los Angeles. Matthew was away at college at that point so we called him to let
him know to tune in. Taryn weaved in and out of the kitchen, dining room, and den,
not sure what to do with herself. Even our dog seemed to be pacing.

We were told approximately what time Carly’s segment would air and had to stand by
for the phone call from the producer in the studio telling us to take our places and
be cued to start the reading. My stomach was in knots. Asking Carly to comply was
always a risky proposition; we had never put her under the kind of pressure live television
created. Carly, however, was adamant that she could handle it and wanted the world
to hear from “the horse’s mouth.” I paced one end of the kitchen, behind Carly and
Howard, so as not to distract them; I had the phone in my hand waiting for the call.
Barb, Tammy, and Taryn were on the sofa watching the show as if it were the last heat
of a race.

The call came about thirty minutes into the show. I gave Howard the nod as I heard
Larry from the TV in the den: “I’d now like to introduce Carly Fleischmann, our special
correspondent.” Carly pressed the space bar on her computer, the trigger to start
WordQ, the latest type-to-voice software she was using on her computer, and she sat,
somewhat noisily, with a proud smile, rocking back and forth on the kitchen chair.
On the screen was her written text:

For as long as I can remember I have had autism.

I overheard Jenny McCarthy say that her son commented that he felt like Dory from
Nemo [Disney’s
Finding Nemo
]
because he didn’t remember things when he was autistic. However I have a great memory
for many things. I also know many autistic kids that are exactly the same way. Parents
know what I’m talking about, kids that can tell you the name of every subway line
or that can memorize line for line different movies and tv shows.

Doctors would like to tell you that we have a hard time processing information. Its
not really true, our brains are wired differently. We take in many sounds and conversations
at once.

I have learnt how to filter through some of the mess.

Her piece was abrupt, as she had had so little time to prepare. I knew it was not
the entire story she hoped to share. But it was a start on her road to becoming the
self-described “autism advocate.” Appreciative of the opportunity to get her message
out to a wide audience, Carly emailed a note to thank Larry, but told us that she
still wanted to do a
real
interview, as she had so much more to say.

Larry’s producer called us a few days after the show aired, to thank us for participating.
“Tune in for the Sunday night rebroadcast of the show,” she said. “Larry reads part
of Carly’s thank-you note and addresses her.”

We huddled around the TV at the appointed time, watching the way some people await
election results. “And now an update on our special correspondent, Carly Fleischmann,
who was on this program last week to talk about living with autism,” said Larry in
a piece added to the end of the original segment. “She wrote me a letter, which read
in part, ‘I would like to thank you for having me on your show . . . Children with
autism need their story told. We need help. We need people to believe. We need people
to understand. We need people to listen. In three and a half days people believed
in me enough to have almost 5,000 sign my petition to tell my
story. I still think it’s a very important one. I love the fact you had me on your
show and by doing this I believe that you believe.

“‘I was told once no one will ever listen till someone stands up. Well I am standing
and I was wondering if you would stand beside me. It’s been a hard process for me
to get to the point that I am able to spell. I believe we all have an inner voice.
We just need to find away to get it out.

“‘You said that there are a lot of things about autism you have not gotten to but
you will try to touch on a fair bit. Let me be the first to open those doors. Your
optimistic and able to back it up believer, Carly Fleischmann. Oh Thank you again
for everything.’

“Well, Carly,” Larry closed, “we thank
you
. And look forward to hearing again from our
optimistic believer
.”

Tammy and I were keen to encourage Carly’s newly found purpose, believing it would
be good for her self-esteem. There had been a lot written about teen depression in
general and the higher incidence among those suffering from ASD. A healthy sense of
self-worth, we felt, might counterbalance Carly’s struggles. Though her transformation
was as slow moving as cold molasses, it was undeniable that Carly was indeed growing.
Our daughter was determined not to be seen as the autistic girl without a voice but
rather as the voice of autism.