Carly’s Voice (40 page)

Carly was thrilled to hang out with the Gillmans’ kids, who were seventeen and nineteen,
and Taryn and Matthew. Howard, true to form, kept them hopping from parasailing to
Ski-Dooing, making my credit card sweat. Tammy was recuperating well from her cancer
treatment and found she had the energy for long bike rides—which the adults were keen
on, the kids not so much. The town we stay in had preserved its sweetness without
being cloying. Friday night there were concerts at the band shell in town—a main street
lined with centuries-old inns, the Ben Franklin Five and Dime, a few pubs, and an
ice cream store on every corner. It was one of those perfect holidays so memorable
it feels like a physical possession.

As the late summer evening sky went deep purple and the parents sat on the back deck
talking, our kids crowded around the dining room table to play Monopoly. Carly engaged
in banter with her brother and our friends’ son, who was one year older than Matthew—playfully
flirting.

“Would you have imagined this five years ago?” Karen asked, having known us since
Carly was an unstoppable swirl of energy. It was a rhetorical question.

On a day-to-day basis it was often hard to see just how much Carly
was
growing. But when we would string together all the small accomplishments—conversations,
letters, camp activities—it was
a dramatic trajectory. For my birthday that summer she wrote me a letter; something
I told her I valued far more than presents.

Dear Dad,

You have been bugging me for almost the last two weeks to write something funny or
comical for your birthday. But what if I don’t want to write that now that your older
you have to stop dancing with your old man butt or sleeping in your underwear? I want
to let you in on a big secret about autism. But don’t tell anyone. Promise. When you
sing no one with autism will ever be able to audio filter you. But I still love you.

I love when you read to me. I also love when you just chill in my room and say funny
things and I love that you believe in me.

I have made you and mom use all your contacts to get Ellen to read my speech and have
even stressed you out about school. But somehow you always come through. I know I
am not the easiest kid in the world. However, you are always there for me holding
my hand and picking me up.

I heard some one say on the radio that a wise person learns from a fool, but a fool
learns from no one. So you must be the fool and I must be the wise person. LOL.

I just want to say happy birthday and I love you.

Your little Elephant Princess,
Carly

Oh, by the way you better tell the readers in your book you called me an elephant.

Carly’s sense of humor was a fuel source that kept us going through much of the drudgery
and frustration. In one of her final
sessions with Barb and Howard before the summer break, she responded to Barb’s question
of “What would you like to talk about today?” by saying,
“I want to talk about how cute I am.”

“Okay, Carly. How cute are you?”

“I’m so cute blind people stop and stare.”

As 2008 progressed, we watched Carly mature and we felt more restored. With renewed
energy, Tammy and I once again weighed the option of conceding to Carly’s wish to
leave the Learning Center. We reconsidered sending Carly to Carlton, the school our
friends Rebecca and Edward sent their son to. We likely should have looked into it
when Carly first came home from Cedarview, but in the urgency of the situation, there
was little time to think. Furthermore, Autism Resources ran a world-class program
and we wanted to maintain consistency with the therapists and directors.

It made me feel like a nomad—each year a new game plan, a new location—but there was
no point in keeping Carly in a program where she was unmotivated and refused to make
an effort to participate. Carlton was a school for kids with autism, similar to the
Learning Center, however, many of the students were teenagers. It was housed in a
former public school, so while ABA was used to teach the students, the building was
roomy and bright, with classrooms, desks, and computers. At least Carly would no longer
be the oldest student at the school or have to work in a small office by herself.

As space had opened up, we were told, Carly could start in September. Based on our
friends’ endorsement and Carly’s desire to leave the Learning Center, we agreed to
make the move. Although Carlton was not a mainstream school, we thought perhaps Carly
would find a kindred spirit. We were doing our best to balance Carly’s desire for
normalcy with her need to learn the skills to achieve it. I was well aware that life
with teens is often a battle of wills—balancing doing the
right
thing with doing the
popular
thing. But the
decisions we had to make regarding Carly were often more painful than those we made
for our other kids, with compromises no parents should be forced to make. Sending
Carly to Carlton, I hoped, had the potential to make both Carly
and
her parents happy. Or was I once again talking out of my ass?

@Carlysvoice:
Today was my third time sitting in a real high school class. It is so cool and I
love doing real work. Oh just want to say hi to the girls.

In early spring of 2010, Carly sat with Howard in a classroom, doing her best to answer
a teacher’s question. Her typing was so slow that the class had moved on to another
topic by the time her sentence was completed. Carly, her classmates, and her teachers
were all still figuring one another out. The school buzzer sounded. Howard closed
the computer and grabbed Carly’s jacket, encouraging her to get a move on.

Carly made her way through the crowd at Western Secondary, a high school of 1,800
kids in midtown Toronto. Howard was close beside her to be sure she wasn’t trampled
in the mad rush of students racing through the enormous, rambling building en route
to their next classes. She seemed to hold her head high despite her signature
gait that swayed side to side slightly, due to scoliosis of her spine. She had a bounce
in her step, her battered red knapsack slung over her shoulder as Howard toted her
laptop in its Desert Storm protective case. Carly went through laptops the way most
teens go through running shoes.

That Carly was there, if only for one class three times a week, was nothing short
of a miracle. She would say it was all her doing, but the army that surrounded my
daughter knows that nothing comes easy when it comes to progress.

Carly had been at Carlton since August 2009. Changes for Carly could be like disturbing
a hornets’ nest, but some nests needed disturbing and we transitioned her cautiously
and with tremendous planning. By now we had had too many “fresh starts” to try it
any other way. I no longer had much enthusiasm for new years and new approaches because
they often went south fast, leaving me feeling more desperate as the options dwindled.
The first semester at Carlton had unfolded relatively smoothly, however, and I faced
the year with guarded optimism.

Working with the school’s staff, we had developed a new IEP, Individualized Education
Plan, to replace the one that had grown outdated in the past months of academic turmoil.
The plan included a list of targeted behaviors to correct—sitting for periods of time
without slapping the table or making loud noises; resisting the urges to shred or
dump materials in front of her or to flop to the floor and bang her head; fetching
and eating her lunch independently. Tasks one would expect of a fourteen-year-old
but that for Carly required microprogramming. In addition to the behavioral therapy,
Carlton created an academic curriculum, hoping to satisfy her keen interest to learn.
But with Carly’s history of not being able to type with strangers, I was skeptical
about how far this might progress before the school would give up.

During the first month, while Howard was there to ease the
transition, Carly seemed happy. She sparred intellectually and conversationally with
the staff assigned to her. Carly would type, her teachers and therapists would respond,
and, when they had the time, they typed what they wrote so we would have a record
of the conversations. They began her English literature module by reading
Death of a Salesman
.
“Do you think our economic downturn is like a distorted mirror image of after World
War 2?”
she asked her therapist, showing off.

The young woman assigned to work with Carly didn’t know how to respond, which was
probably Carly’s intention in asking.

She connected well with some of the staff, particularly the ones willing to engage
in the types of conversations Carly was interested in—the ones about pop culture or,
more important, about boys.

“Do you have a boyfriend?”
she asked Kendall, a petite twenty-three-year-old who worked with Carly in the mornings.

“Yes. But we broke up,” she replied.

“Did you brake his heart?”
asked Carly.

“No, it was a mutual break-up.”

“Was he cute?”

“Yes. Very.”

“Was he not considerate?”

“Yes, he was.”

“How did you meet him?”

“Grade 11, class. In school.”

“Are you on internet dating?”

“No. But my friends are.”

“Can I put you on and write your profile?”

“Can I hear what you would write first about me?”

“She’s a blond bombshell looking for an adventurous and old fashion valued man to
treat her right.”

“I’m not sure I’m ready to go on online dating.”

“But I will get you lot of guys”

“Have you ever written a profile for online dating before?”

“no but im sure i can do it”

“If Howard weren’t married, what would you write for his profile?”

“He’s not worth it ladies. Lol”

“What do you think of school?”

“It’s cool.”

“Do you think any of the boys in the class are cute?”

“They are cute but no brad pitt.”

“What about Angelina Jolie?”

“We can just push her out of an airplane.”

As Carly got acclimated to her new school, so did I. On the surface, everything looked
like a smaller version of the typical school our other children had attended. A low-slung
brick building abutted by a tidy parking lot and slightly worn-looking sports field,
a candy-colored play structure of tubes and ladders, and a line of self-sufficient
shrubs lining the pathway up to the side entrance—all gave the impression that nothing
more complicated than mathematics and civics went on inside. Entering through the
heavy double doors (“Keep doors secured at all times!”), I looked down the long hallway
lined with student and staff photographs, artwork, and crafts projects. Once I was
through the foyer, however, all the similarities to a typical grade school ended.
Students transitioning from one room to another seldom roamed the halls unescorted.
Staff, generally young women in their twenties, walked just a few steps behind, occasionally
redirecting their students with a gentle nudge or quiet reminder of the task to be
completed.

“This is Mr. Fleischmann,” said one companion to her student on an afternoon I was
visiting. “What do we say when we meet someone?”

“HellomynameisStevenit’sapleasuretomeetyouwhatisyourname,” the boy said, with a rehearsed
precision and flatness of a foreign actor reciting his lines phonetically. The boy’s
eyes darted anxiously at my torso or the wall behind my head.

“Hello, Steven.” I smiled, knowing how many months of therapy it must have taken to
elicit that response. “My name is Arthur. I’m Carly’s dad.” Sometimes I would offer
a hand to shake. But after a young man a good foot taller than me and twice my girth
had once squeezed my fingers so hard they nearly popped like sausages on a barbecue,
I was tentative with the formality.

“Oh,” he replied, looking down the hallway and wandering away, his therapist turning
back to smile at me.

Despite the enthusiastic beginning, however, Carly’s friendly chatter with her therapists
ended within a few months. Much like she had at the Learning Center, she refused to
write or do work for any of her teachers or therapists with the exception of completing
some multiple-choice answers on worksheets. It was always hard to tell whether her
refusal to type was intentional or beyond her control—and this was a constant source
of frustration for everyone.

But it wasn’t just the lack of spelling that stymied us; it was her regressive behavior.
We saw Carlton as an interim step toward integration into a mainstream high school.
Carly needed to demonstrate her ability to remain calm and still for the duration
of a traditional high school class period before we could unleash her on the chaos
of a public high school. We explained to her that as soon as she was able to sit for
periods of time, focus without tantrums, and cooperate with the teachers, we would
be able to try part-time days at a local high school. We knew by now what she was
capable of, and she knew we knew. Yet we continuously received reports of urine accidents
that seemed intentional, refusal to cooperate with simple requests, and an increasing
number of tantrums. Despite Carly’s intellectual
ability, the school eventually moved her into a classroom of
lower-
functioning children because she was disturbing her classmates.