Carly had complained frequently, “I need you to fix me. Fix my brain. My mouth feels silly.” She would then slam shut the computer and run from the room in a fit, crying and throwing herself to the floor. But now she was beginning to come to terms with her condition. Once Tammy asked Carly bluntly if she knew what autism was.
“It’s something I have that other people don’t like to see,” she responded poetically.
After several weeks of slow progress, the letter was nearly complete. In it, she had introduced herself and made her request of Ellen but hadn’t wrapped it up. During one of our evening routines—Carly freshly bathed and sitting at the kitchen table with Howard on one side, me on the other eating dinner—I told her, “It’s time to get this letter finished.”
In truth, I felt this exercise was a charade. I could barely get Taryn to clean up her room, much less convince a celebrity to read our daughter’s letter, but with Howard’s quiet confidence, Carly’s steadfast effort, and Tammy’s unwavering networking, I kind of went along with the plan. Carly was hesitating and wrapping up the letter had stalled. “Finish it with ‘thank you’ and ‘yours truly,’” I suggested, trying to push it home.
Carly probably snickered at me inside. In hindsight, I think she was looking for a way to strike an empathetic chord. Finally, Carly added the last three sentences to her request.
Dear Ellen,
My name is Carly. I am from Toronto.
I have autism. I can’t talk but I can spell on my computer.
It is hard for me to do things like sit still or play a game.
It’s okay sometimes, but I do get sad and frustrated.
I want to be like other girls.
I like you because you make funny sounds like me. I like when you dance and act silly. You make me smile.
Howard told me we share the same birthday and I only know one other person that has the same birthday; she is my sister. I make a wish every year and it never comes true. If I tell you maybe it will.
My dream one day is to talk but I don’t know if I will be able to.
So my birthday wish is for you, Ellen, to read my speech and be my voice at my party.
I’m sure you had a dream of being an actor and someone helped you out.
So can you help me out?
Love your fan,
Carly
Carly had mastered the centuries-old art of guilt and manipulation as she spelled out the closing sentiment of her letter. We marveled at how Carly was able to draw Ellen’s experience into the situation to create empathy. “That’s incredibly mature and sophisticated,” I said, as much to myself as to Carly.
And the salutation was the first of what would become a signature trait of Carly’s letter writing: personalized sign-offs, each one tailored to the theme of her letter. “Where did she learn the concept of being a ‘fan’ or how to write a letter like this?” I asked Howard rhetorically.
In the coming months, this would be a recurring theme in our relationship. Carly would dribble out small amounts of knowledge or observations, crack jokes and tease us. We hypothesized that although she didn’t sit and watch TV or read newspapers, she likely picked up information. She seemed to take in information around her as if by osmosis. When I asked her directly about how she knew the definition of certain words, or where she had heard about various current events such as a particular politician’s position on government-funded autism services, her only response was a coy, “I know stuff. Duh.” There appeared to be an entire world spinning inside Carly that we had yet to discover—a world of imaginative thought far beyond the controlled, adult-managed one she lived in.
Although I wanted to encourage Carly in her goal of having Ellen read the speech, I had no expectations of being able to get the letter to Ellen—certainly not in the two months that remained before Carly’s bat mitzvah.
Tammy was the one who was driven to bring about a miracle. As a friend once told her, “Some people don’t take no for an answer. But you never even get no for an answer.” With Barb’s continual encouragement, Tammy engaged for battle—a compulsive warrior.
Carly worked on her speech and Tammy navigated the six degrees of separation that apparently linked us to Ellen DeGeneres. A search on Google led her to the name of Ellen’s agent at ICM, a major talent agency in LA. Charles and Richelle Bolton, close friends of ours from graduate school, were living in Los Angeles and contacted someone they knew who also worked at ICM. “He’s Jewish, too,” Tammy joked. “He’ll understand guilt. At least he’ll know what a bat mitzvah is.” By the time my wife’s sleuthing was complete, we had contacted Ellen’s agent, her manager, producer, and personal assistant. I think someone who worked for me at john st. even put in a call to Ellen’s makeup artist, whom she somehow knew through the industry. Initial responses were not encouraging (“We can offer you a signed photograph of Ms. DeGeneres,” said Ellen’s manager). But compromise is the enemy of success, and Tammy continued emailing her newfound contacts and eventually, we successfully got Carly’s letter through to Ellen.
By that time, several other leads we explored had also mentioned the request to Ellen and her staff. In an effort to persuade them, we got Carly to relinquish a draft copy of the “secret speech” to Tammy and me, so we could attach it to her letter. We thought if they could get to know Carly and the amazing strides she had made, perhaps we could move them as much as we were moved by Carly’s unique voice and spirit.
Over the coming weeks, we would get occasional emails back from Ellen’s agent. It might happen. It might not happen. It probably will happen. “My daughter told me I had to make it work. It’s a chance ‘to do good,’” he told us. All the while we kept this from Carly. Her life was a string of disappointments; she didn’t need another. Maybe she would even forget about it, I deluded myself.
On a cold, dark evening in December, I received a call on my cell as I drove up Avenue Road from my office. Christmas lights adorned the shops and restaurants lining the city street. Traffic crawled. “Ellen will read Carly’s speech on video,” said Ellen’s personal assistant, Craig. “She’ll do it after she records her Christmas show, and we’ll send you a DVD by the New Year. Will that be okay?”
I was stunned. What are the odds of this? I thought to myself. After thanking Craig profusely, I had to ask: “Clearly, Ellen is a very kind person, but I’m sure she gets thousands of requests. Why is she doing this?”
“She was very moved by Carly’s letter and speech. And I have to tell you, you have quite the PR machine going there.” He chuckled warmly. “We were approached by three or four people about this. No matter which way we turned, Carly’s name was coming at us from all sides.”
While I knew it was the confluence of strength, a group of strangers’ and friends’ desire to do good, I was equally becoming aware of the power of Carly’s words to motivate people to action.
I called Tammy on my cell. “How should we tell Carly?” I asked.
“Let’s take her out to Demitri’s after dinner,” Tammy suggested, referring to a dessert place near our house that Carly loved.
Later, as Howard, Tammy, and I sat around a table sharing an enormous slice of chocolate cake, we announced to Carly that Ellen had agreed to her request. Ellen would be her voice at the bat mitzvah. I had no expectations of heartfelt reaction, as Carly’s face does not brighten and she will seldom spontaneously hug. With no way to vocalize her feelings, Carly is impossible to read. At best, she will look down and the slightest smile—almost a knowing look—will briefly cross her face.
The only way to understand what Carly is thinking is to persuade her to put it down in words. Her body fails to communicate what her brain thinks. “Tomorrow you need to write a thank-you note, and we’ll send it to Ellen’s assistant,” Tammy told her.
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 s
o 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.
16
That Is How We Learn
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.
Carly’s Voice Page 19