Carly’s Voice (28 page)

This Carly did, with little persuasion.

Hi Ellen. my mom and dad told me to write you a thank you two weeks ago. Before I
knew that you had said yes. It takes me a long time to write my letters so I did it
just in case.

Last night my mom and dad took me out for a big big slice of cake and then they told
me. They said you are going to read my letter. When I wrote my first thank you letter
I did not know how excited I was going to be. So thats why I want to give you this
also. You made my wish come true.

Some times I think I would like a magic wand.

So I could do what you did for me for other people.

For my dad I would wave my wand and make him have lots of money so he does not have
to go to work and he can stay home and read to me.

For my mom I would make all the silly people understand about autism so she does not
have to fight with them and be on the phone all the time.

I would help Howard finish his dream and open his camp for kids like me so I could
hang out with him all summer. I know it would be fun.

I think for taryn I would replace all the things I broke of hers and for Matthew I
would get him a girl friend.

Wait I dont think any wand in the world could get Matthew a girl friend.

I know, I would wave my wand around and around so you would know how happy I am that
you made my wish come true.

I need you to do me another favor. I need you to stop reading this letter and give
it to Portia.

Hi Portia,

Portia I am in Toronto and Howard showed me a map a long time ago and I saw that Ellen
is far away from me. I want to give her a hug to thank her for what she has done for
me.

But I cant.

So I was hoping you could give her a hug from me.

When you do hug her close your eyes and picture a girl whos wish came true and this
way Ellen will know its from me.

I also would like to say I love your name.

You must have a cool mom and dad .

My parents just named me carly. But I like it.

Tell Ellen I say thank you and like I said in my thank you letter if she tells me
her wish, who knows it might come true.

It worked for me.

Love,

Carly

With every letter Carly wrote, we got to know her more and more—her sense of humor,
humility, and strength. I wasn’t sure which I was more excited about: Ellen’s commitment
or Carly’s response. This ability to inspire others through her words was the
opening of a new chapter in Carly’s life. Of course, we were all still working
for
Carly. But helping her reach out was a welcome challenge—and a far cry from that
monotony of physical care, education, or therapy. Those efforts were one-way, tasks
that offered little reward save for the knowledge that we were doing what was right.

Carly’s inner voice had been trapped by the rough-hewn stone of her exterior for so
long it was hard to imagine what she might sound like. The sharp edges of her behavior
stood in glaring contrast to the beauty of what lay underneath. Coming to this realization
was as disorienting and jarring as a jump in a frigid lake. And just as invigorating.

I am an autistic girl but autism doesn’t define who I am or how I’m going to live
my life. I have encountered many hardships in my life but slowly and surely I have
been over coming a lot of obstacles in my path. There are many days when I think it
might be easier to give up then fight. However if I give up if I don’t try then who
am I really. Because when it’s all said and done I am Carly fleischmann a girl who
needs to try to be the best I can be. I know its not easy I know I will slip up and
temptation will win once in a while. But I am me and if I’m not trying to better my
self then who will.

—Carly

A bat mitzvah for upper-middle-class modern Jews can become a weekend-long affair;
more like a wedding than a coming-of-age ceremony. Family arrives from out of town.
Dinners, lunches, party dresses, and makeup all threaten to overshadow the spiritual
celebration that this occasion is intended to mark. For most, it is one of the happiest
life-cycle events.

Carly had always been easily overwhelmed by big events and large crowds, so I was
filled with trepidation as the weekend approached. Rather than withdrawing into herself,
as is the stereotype
of children with autism, Carly’s reaction to stress was to explode. She would start
by covering her ears and rocking, but this would quickly disintegrate into flailing,
crying, and head banging. It had happened so frequently, I dreaded any occasion that
included my daughter and anyone other than our immediate family or workers. Waiting
for a ticking time bomb to explode is not my idea of fun. I had long gotten over the
embarrassment of these public eruptions but would never overcome the anxiety of seeing
my daughter out of control and trying to explain to strangers and near-strangers what
was going on.

But when the day finally approached, I was relieved to see a different side of Carly.
She had been remarkably engaged during the previous months—writing her speech, gathering
food and baking cookies for a homeless shelter, and meeting the DJ to select music
for the party that would follow the service.

“Mom says I can pick the song we come out to. Nothing by Soulja Boy. He sucks. I want
to dance to Stronger. Kanye West. Will you dance with me? You should get glasses like
his,”
she wrote to me.

I smiled at how playful Carly was inside but couldn’t help but feel the creeping sadness
that, while Taryn would be with her dozens of school friends, Carly would be with
her workers and therapists. She had once complained,
“My friends are twice my age. And you have to pay them.”
But Carly seemed to be putting aside any self-pity and recognition of her differences,
and was getting into the spirit of her bat mitzvah with zeal.

Jewish law suggests that there are several times throughout the week when a bar or
bat mitzvah can take place. Because of our special situation, we elected to go with
a less traditional but simpler evening service on a Saturday night. Taryn would read
from the Torah, we would say special blessings, and Carly would participate by opening
and closing the
Aron Kodesh
, the special cabinet that holds the Torah scrolls. After the service would be dinner,
dancing, and
toasts. This celebration was as much an excuse just to be happy as it was a recognition
of the girls’ coming of age. We had had so many struggles over the course of thirteen
years with Carly’s challenges and Tammy’s illness. The bat mitzvah celebration was
to be a purely joyful event and was to exist squarely in the Autism-Free Zone—that
social space Tammy and her friends had created where there was to be no mention of
the “A” word.

The months of my wife’s extraordinary planning paid off. On Saturday afternoon, a
bright crisp winter day, the beautician Tammy had booked to do hair and makeup for
the girls arrived at our house carrying a large case containing her tools of the trade.
Our dining room was turned into an impromptu salon with hair dryers, straightening
irons, and an endless array of boxes, brushes, and small metal contraptions that looked
like they were borrowed from Dr. Frankenstein. As I held up one such tool in mock
disgust, Taryn explained, her eyes rolling upward, “It’s for curling your
eyelashes
,” as if it were the most obvious thing in the world.

Taryn was the textbook teen on the eve of her bat mitzvah. She had been walking around
the house for weeks chanting the section of the Torah and the accompanying prayers
she was assigned. She fussed with the dress she would wear and what shoes she would
get to match. She had attended many of her friends’ bat mitzvahs and knew the drill.
When it came time for her to have her hair and makeup done, she offered suggestions
as though she were an expert herself and sat patiently while the woman cheerfully
worked.

“I’m not sure how much you’ll be able to do with Carly,” Tammy warned the woman when
she was finished with Taryn. “She generally can’t sit for long and doesn’t like her
face being touched.”

But what we witnessed was remarkably different from what we imagined. Carly sat perched
on the high stool, ankles crossed. Although it was clearly a struggle for her to remain
calm—she
fidgeted restlessly—she sat for nearly twenty minutes as her hair was blown dry and
pinned and a little makeup was painstakingly applied. This was her bat mitzvah, too,
and it seemed she wanted equal treatment. We already knew she thought of herself as
“cute and funny” from conversations she had with Barb’s college-age son. “You’re smokin’,”
I said to her when she was done. I think I detected a knowing smile.

We had asked the rabbi to respect tradition in the service while keeping it as short
as possible in order to keep the stress levels down—Carly’s and ours. Carly was able
to sit through Taryn’s reading with minimal squawks and slaps, and when it was time,
she opened and closed the doors of the ark containing the Torah scrolls enthusiastically.
Nevertheless, I was relieved when the focus of attention was no longer on us. I’m
not sure who felt the pressure more, Carly or me.

After the service, held in a small ballroom on the second floor of a hotel in downtown
Toronto, guests were ushered downstairs to a cocktail reception and ultimately, the
dinner. The hotel had the festive elegance grand buildings wear particularly well
during the holiday season. There’s something about winter that suits formal occasions.

My son assembled a jazz trio with two of his high school buddies. They played in the
lobby while guests mingled. Taryn’s friends clowned around, reconfirming that while
they were dressed like adults, they were in fact still kids. The photographer’s flash
popped while I sipped a scotch, letting the warm burn settle down the jitters that
lingered from the preceding hour. “They both did great,” Tammy and I agreed with relief.

As we entered the main ballroom for dinner, my wife and I were filled with an anticipatory
buzz. We knew that the highlight of the evening would be the reading of Carly’s speech
and were thrilled to share this triumph with our guests. The room was a perfect venue
for this accomplishment. The kids’ tables on the left were adorned with candy-studded
centerpieces, the adults’ on the right with flowers and candles.

As the evening unfolded, I smiled with a happy melancholy. I knew my state of mind
was hackneyed, observing that all my children were becoming adults. Dressed in a dark
suit, my son acted as an emcee, introducing the family and friends who made short
speeches or toasts, and instructing people to take their seats or join in a dance.
He took his job seriously, standing at a small lectern with a microphone. “I’m not
sure which one of you is the parent,” my friend Phil quipped. I had to agree, Matthew
looked so grown-up. At seventeen years old, he struck me as having become a thoughtful,
caring person. Would he have become as sensitive and insightful growing up in another
household? Was it nature or nurture? His voice choked with emotion as he noted that
he would be leaving home for university in the fall and not be a part of his sisters’
day-to-day lives anymore.

Although some siblings of disabled children feel resentment toward their parents for
a lack of attention, Matthew clearly felt nothing but a loving attachment; he was
as much a part of the team that kept Carly on track as her parents and therapists.
Later that year at Matthew’s graduation dinner, Carly would tease that when Matthew
left for college she wanted his bedroom because it was larger than hers.
“But after we air it out,”
she said poker-faced. Exchanges of Matthew’s kindness and Carly’s sarcastic barbs
had become a fixture in our family.

Taryn, too, spoke beautifully, and in a way that demonstrated the young woman she
was becoming—yet with the charming sarcasm befitting a teen. Less heartfelt than our
son but with a dry wit and a smile, she thanked Matthew for being a great brother.
“I’ll miss you when you leave for school this fall, Matthew. I don’t just
think of you as my big brother,” she laughed, “but also as my IT manager. I will not
only be losing a friend,” she continued, “I will also be losing my chauffeur.”

We saved Carly’s speech for last. Tammy welcomed our guests and thanked the “village”
that it took to raise Carly—all of whom had made what we were about to show a reality.
“Here goes,” she said, and took a dramatic breath before reading aloud a thank-you
to everyone who sat at tables five and six—the twenty or so people who were part of
our autism world. “I would especially like to thank our friends Charles and Richelle
from LA for helping us pull off what you’re about to see . . .”