Carly’s Voice (45 page)

The video ended and we were called up. Holly and Rodney
hugged us as if we were long-lost relatives and thanked us for making the trip out.
In all the excitement I had forgotten to think about how I would express my appreciation
in that short moment on stage before Carly’s speech. Holly turned to the audience
and told them that Carly had prepared a short acceptance speech and the lights dimmed
slightly as the screen filled with her words, the stadium speakers giving life to
the voice of her computer:

I feel deeply honored to be receiving this award tonight. I just have one question.
Does anyone know if I can trade this award at a convenience store for a bag of chips?
I love chips. L.O.L.

Ok, I’m ready to be serious. Are you? I don’t think many people thought when I was
a young child that some day I would be getting my first A in a mainstream advanced
grade 10 English class or introducing Temple Grandin to over a eight hundred people
or even finding my inner voice and being able to share it with all of you tonight.
In the last four years of my life I have found, and I am proud to say, started using
my inner voice to type and to share the truths, secrets and myths about autism. I
was asked, a while ago, if I get sick and tired answering questions to my over 15
thousand fans and followers on Twitter Facebook and my blog. The way I see it, how
is anyone really going to know the truth about living with autism unless someone with
autism talks about it? They say autism is one of those things that even doctors and
experts don’t really understand yet. So, like I tell my readers, why go to a duck
to find out what’s wrong with the horse when you can go right to the horse’s mouth?

It hasn’t always been a smooth road for me to travel and I still find myself traveling
over many bumps in the road to get to where I want to be but luckily for me, I have
many caring people traveling beside me. I would like to thank my mom who has
taught me to fight for what I believe in. She does this by helping me fight and helping
other families with autism get what they need to give their child the opportunity
to find their inner voice.

I would like to thank my dad who would climb a volcano oozing lava or swim across
the ocean just to read me a story or spend time with me.

There are two other people in my life I would like to thank, Barb, my speech pathologist,
who has been with me for longer than I remember and Howard, a man who every child
with autism should have stand beside them. I owe a lot to these two for believing
in me so much that I started to believe in myself.

Ok, enough with the mushy stuff. I promise I am almost done. Just 112 more pages to
go. LOL. I believe it’s time that children and adults with autism have a chance to
find their inner voices. It is time that people around us get educated about autism
and what it is really about. It is time that we all start believing in the possibilities.
Because of this, I would like to share my award tonight with everyone living with
autism. Many small steps have been started in the right direction but maybe it’s time
for us all to take that one big leap.

I would like to thank Holly, The HollyRod Foundation and Lori for giving me the opportunity
to be here with you tonight. Their generosity and caring has made me feel like a real
celebrity. I would also like to thank all of you for this honor and award tonight
on the behalf of people living with autism everywhere.

Thank you.

While the speech played, I stood behind Carly, who pursed her lips, putting her right
hand to her ear in the pose that was her trademark. I wrapped my arms tightly around
her waist to make both of us feel more secure and Tammy wrapped her arm around me—the
three of us stabilizing one another.

When the speech was done and we had thanked our hosts one last time, we returned to
our seats, receiving pats on the arm and smiles from audience members as we walked
by. Despite her lack of broad expressions, I could feel Carly was basking in the glory.
She sat quietly for the rest of the awards ceremony and when the music started for
the entertainment that followed, Carly rocked in her chair, a small, pleased smile
on her face.

We departed early the next morning—Carly to sports camp, Tammy and I to return home.
At the airport, I watched Carly and Sheila pass through security and waved as they
disappeared into the throng. Carly had on her worn knapsack and pressed through the
mob with her impatient, swaying gate. Sheila walked quickly to stay next to her, guiding
her through the crowd. I thought to myself, since Carly’s first tentative words five
years earlier, her voice had become strong and distinct. Her actions, though often
sidetracked by uncontrollable compulsions, were directed and purposeful. I knew that
while she would always need someone at her side to guide her, she had a newfound momentum
to her life.

“How far up the ladder will she climb?” I had asked Carly’s doctor, years before.

“We’ll just have to wait and see,” she had replied.

I turned, slinging my carry-on over my shoulder, and walked the other direction toward
my gate.

Q: kpm @CarlysVoice:
Do you think you’ll ever be independent?

A:
I don’t know if I will be fully independent. I still am working on lots of my issues.
but I surprise my self every year so u never know.

The 2010–2011 school year started with the hope and promise and tingling nerves of
a first date. Carly came downstairs wearing close-fitting designer jeans and her favorite
Pink by Victoria’s Secret T-shirt. Howard had learned to iron her hair, allowing wisps
to spray forth over one eye. I took to calling him
Mr. Howard
, with mock affect.

“Morning, C,” I said. I had already walked our dog, Nelly, and was sitting at the
table, sun streaming across my newspaper.

Carly flopped heavily onto the kitchen chair next to me as Howard brought over the
whole-wheat tortilla with low-fat mozzarella I had prepared minutes before. This was
Carly’s favorite breakfast.
It’s actually her only breakfast thanks to her need for repetition. For the first
time in her life we had to watch her weight. Carly had gained nearly fifteen pounds
due to a medication her doctor was trying in an effort to decrease the OCD outbursts.
“No dip today, okay, Carly?” I told her more than asked.

After a summer that included receiving her award from Holly-Rod and two months at
two different summer camps, Carly was about to start high school as a ninth-grade
student.

“Let’s start with five classes,” Elaine suggested when we met over the summer. “And
we’ll try to stagger them so they don’t all require lots of writing and don’t all
land on the same day. One will be a resource class; like a study hall where she can
catch up on some of her work.”

Western Secondary has three levels of education: gifted, academic, and applied. Carly
was enrolled in two gifted, the most vigorous of the three levels, and one of each
of the others. In the coming weeks, we would settle into a schedule with two assistants
escorting Carly to school. Sheila, who had been working with Carly for over a year,
had recently finished teachers’ college but agreed to put her job search for a full-time
teaching position on hold to work with Carly in the mornings for the school year.
Howard finished the day and stayed on until bedtime. Carly only went to Darlene’s
house on the weekends now. I am nothing if not practical and know that despite her
gains, Carly’s erratic sleep patterns, her obsessive compulsivity, and the string
of therapists that accompany her fifteen hours a day are too much to have in our house
24/7. I love my daughter, but I needed some space if I was to continue to do so.

She was not happy about the respite situation, but told us that she understood why
we needed a break from her and she loved us despite the circumstances. Guilt is a
powerful tool Carly had mastered with the deftness of a Jewish grandmother. But when
she told us this, this time, her sincerity allowed me to cut myself some slack.

The fall was filled with Carly highs and Carly lows. She participated in activities
and events at school along with her classmates, but her OCD continued to imprison
her. Carly attended her first school dance at Halloween dressed as a skeleton, the
only costume we could agree upon. She wanted the Sexy Ladybug; we wanted modesty.
Howard escorted her and watched as her classmates beckoned Carly to the dance floor,
holding her hands and swinging her around. Such a simple act of acceptance no one
might have dreamt of a few years earlier.

Ok so Friday night I went out to see a movie with my friends. I was amazing at the
movie and love not needing my parents or anyone like that beside me. I had a really
good time but fell asleep 10min at the end. But really the movie was No Strings Attached
and everyone really knows how its going to end. lol. After the movie we went out for
dinner and I had a surprise birthday cake show up. It was so cool.

—Facebook posting, November 2010

Class assignments stacked up as Carly was unable to type fast enough to complete them.
“This was never about getting the academic credits,” I said, “it’s about getting started.”
For reasons only Carly knew, her mornings with Sheila were more challenging than her
afternoons with Howard. Even after a year together, Carly seldom typed for Sheila
and struggled to keep the compulsions in check. There were days when Sheila’s main
task was getting Carly from home to school. Any pretense of class work was cast aside
in the pursuit of survival. Why Sheila endured the punishing task I would never know.
It was a testament to her character and a product of the spell Carly casts on people.

Howard continued to be the “autism whisperer”—often able to help Carly down from her
explosive compulsive episodes faster than anyone else. And though Carly was making
great strides in typing
more independently, she was still more capable if Howard was in the vicinity.

One afternoon as the two of them moved from English to philosophy class, Howard stopped
briefly to talk to one of Carly’s teachers in the hall. In the rush of students, he
didn’t notice that Carly had wandered away. Looking around as the crowd thinned, Howard
was filled with a wave of panic. Running down the hall, he burst through the doors
of the stairwell to find Carly standing with two classmates, tapping out a conversation
on her iPad.

“Carly! Don’t wander off like that again,” he said, exhaling in relief.

But when Howard called me at work later that afternoon to tell me what had happened,
I heard pride rather than remorse in his voice.

So i have big no huge no massive news. Today I participated in a class play reading.
The play was call One Of Them and i was girl number 2. It was so cool howie programed
my ipad with my lines & I was able to deliver them. It was so much fun being able
to do what my class were doing. They all clapped and came up to me to tell me i was
great. I love my ipad and thanks to it I’m participate in class in a whole new way.

—Facebook posting, April 2010

It has always been Carly’s vision of what
could be
, her drive, that kept us all moving forward. “When I first met Carly, she was about
two years old,” Barb once told a reporter writing an article on Carly’s communication
breakthrough, “She was very active and had a really short attention span. I would
see her at her preschool and I remember for circle time they would sit her on top
of a cube chair so she wouldn’t take off. My goal with her then was to create the
best communication system possible, and that included speech. Even then
everyone at school had the sense that she had a spark. There was more going on inside.”

It was this spark that could bring Tammy and me back from the edge so many times.
Carly had the devastating ability to bring us to our darkest places—deep caverns of
hopelessness, exhaustion, and sadness. But her determination, good humor, and considerate
nature lifted us back up.

On the occasion of Tammy’s fiftieth birthday, Carly asked Howard to take her shopping
for a special gift. They stopped to get a card first and at the store she spied a
paperweight—a snow globe with Cinderella’s glass slipper on a pink cushion inside.
On the base was the aphorism “Even miracles take a little time.” Carly wrote Tammy
a note saying that she thought the quote aptly described both mother and daughter.
The gift sits on the bookshelf in Tammy’s home office, and I stop to look at it every
time I go in. Never before has a tchotchke had such meaning.

By nature I am an optimist and try to feel some measure of gratitude in whatever is
dealt. So while my heart will always break at Carly’s suffering—the shackles of OCD
and the tangles of autism—I remain hopeful that her life will bring her happiness
and a sense of meaning. In the autism community, we are among the fortunate ones.
Through years of hard work, constant intervention by some remarkable individuals,
and perhaps luck, Carly has found her voice and with it has come accomplishments that
others afflicted with ASD will not achieve. We have been given the opportunity to
understand our child, where so many others have not.