Carly’s Voice

by Arthur Fleischmann

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 . . .”

  These “thank yous” and “you’re welcomes” are traditional fare at an event like this, but most guests were not expecting what was to follow. Less than twenty people knew about the video; fewer still had actually seen it. My heart kicked into high gear with anticipation. I wanted everyone to have the same reaction I had had when I watched Ellen reading Carly’s words for the first time. I felt a surge of adrenaline; finally others would see Carly through a new lens. I was acutely aware that once her speech was read, Carly would no longer be the same person she once was. She would be publicly transformed from the daughter with autism into someone much more present and complex than anyone had known. We had described Carly’s writings and conversations to friends and family during the past year, but there was no comparison to hearing Carly’s words firsthand.

  The room was briefly plunged into inky darkness before a shimmery light bounced from the projector screen. Ellen appeared, sitting on her set decorated for the Christmas holiday season. There was no audience in the studio, just my daughter’s idol, in her signature chair, looking straight at the camera. “I received this letter from Carly,” she said, and went on to explain that Carly had asked her to read the following speech. She was happy to do it, she said, because clearly, this was a very special girl. “So here we go, the words I’m about to read are her words. These are Carly’s words.”

  “I am delighted to be here. I really don’t know what to say but thank you for coming. It’s been four months that I have been working hard on this speech and I hope you like it. I was hoping to read this speech to you. But I can’t so I asked someone who makes me smile to read it for me.

  “I have to tell you, I cheated and looked at some other girl’s speech and she thanked everyone who came from out of town. I was told that people are coming on planes and trains just to see me.

  “Okay, you can go now!”

  At that, Ellen cocked her eyebrows and smiled. “That’s funny.” She continued:

  “I know I might act or look silly to some of you, but I have autism that makes me act this way. A lot of kids and older people have autism, too. I am not the only one. Autism is hard because you want to act one way but you can’t always do that. It’s sad because people don’t know that sometimes I can’t stop myself and they get mad at me.

  “I can’t talk with my mouth but I learned how to spell and I can talk on my computer. It helps me sometimes to get things that I want like chips and candy. I like chips. My dad said that even though I can’t talk now one day I might be able to. Two years ago I learned how to spell so who knows, one day I might be able to read this to you myself.

  “If I could tell people one thing about autism it would be that I don’t want to be this way but I am. So don’t be mad; be understanding. I think people don’t like things that are not like them or look funny. But we are not all the same and why would we want to be?

  “I do want to be like everyone else but I think I would miss things about being me. Like when I spell for someone for the first time and see the look on their face. And that even when people are mad, if I cuddle with them they are happy again.

  “When you grow up you might want to be a doctor or a teacher or just want to make people laugh. But I want to be a cook. When people are eating they look happy and I want to make people feel good.

  “They say when you have a bat mitzvah you turn into a woman but it is not really true. I think a bat mitzvah is just the start. I think it is like me and spelling; it takes a long time to be able to get good at it. I don’t think anyone can say they are the perfect woman. I am sure I will make lots of mistakes. But that is okay. That is how we learn.

  “A bat mitzvah is funny. It says that now you should know all about being Jewish but it says that now you are old enough to learn about being Jewish.

  “I was told that my sister has to read something in different letters and I can’t do that. So my friend Barb told me to talk about something Jewish. What I am going to talk about really should not be just for Jewish people it should be for the whole world. It is called Tzedakah. It is when we are giving not just things like cookies, but giving of ourselves.

  “If everyone in the world did one nice thing for someone other than yourself the world would be a nicer place. I can’t say that we should be nice all the time because I think it’s sort of like me. I can’t help it when I do things, but I think we should try hard to be nice when we can.

  “I was told at camp that when I smile everyone starts to smile so maybe just for today we should walk around with a smile on our face and then everyone around us would start to smile and it might just come back to us. I would like to make people in the world happier so I made cookies with dad for people who don’t have food. It must be sad not to have food. I love food. I think I would be happy if someone took time from their day to make food for me; then maybe I would want to do some thing good for some one else. It was lots of fun and rewarding knowing that I made cookies for people who really needed them and that’s why I did not eat all of them. I gave the men the cookies and they were happy to get them. The strange thing is even though it was my project, my whole family took part in it one way or the other.

  “I have to say I like my dad so much. He is so nice. I am now a woman but he still reads me stories in bed.

  “My brother Matthew is funny. He tries to be the boss sometimes but it never works. Sorry Matthew.

  “My mom is always doing work for me and tells me I am a hand full.

  “Which leaves me to Taryn. It’s hard when you want to play the same games as her but you can’t or when you break something of hers and you did not mean to. But even though all this happens she still loves me and I love them all.

  “Lots of people have worked with me to help me get where I am.
I want to say thank you.

  “But one I have had for the longest time. His name is Howie.

  “Every time I tell him my dreams he says one day it will come true. So I just want to say one day your dreams will come true too.

  “Okay, I thanked every one for coming I talked about autism and my Jewish topic but how should I end this?

  “I know.

  “A wise woman once said that if you don’t have anything else to say then you should just do one thing.

  “Dance.

  “Have lots of fun.

  “I know I will.”

  Ellen’s voice snagged with emotion, and she wiped her eyes. “Carly, you are amazing,” she said. “This is for you,” she concluded, before proceeding to dance her signature dance across the stage.

  There was a pause in the room as the lights came back up and our friends and family absorbed what they had just seen. Then, as if breaking a vacuum seal, everyone rose in applause and cheers. I stood to the side of the screen next to Tammy, Matthew, Taryn, and several of the young women who worked with Carly through the years. As I watched, I slipped my arm around Tammy. Although I had seen the video numerous times to convince myself it was real, sharing it in a grand venue gave it an impact I was not ready for and I found myself winded.

  Over the course of her speech, Carly helped people see sides of her that many of us had taken for granted. Instead of being bitter or petulant, Carly exhibited the same sense of humor that often kept our family from careening off the rails.

  Carly had written this speech to be read by Ellen. The timing and cadence was that of Ellen’s own monologues. Carly had never doubted for a moment that Ellen would be her voice.

  Although I had watched her speech unfold over the preceding months, it hadn’t occurred to me that Carly wanted to help people who were faced with greater hurdles than her own. In fact, it had never occurred to me that there were hurdles greater than her own. She did not see herself as “one of them” but as one of us. In fact, perhaps she was a better one-of-us than most. Despite the obstacles that kept her out of the mainstream, Carly was not looking for sympathy but rather for acceptance.

  I looked about the ballroom. People were dabbing their eyes and blowing their noses as if we had all experienced some sort of collective catharsis. The waitstaff, bartenders—even a security person required by the hotel for such events—all stood statue-still, momentarily chilled with emotion.

  “Okay,” I said turning to the DJ, “you better play something lively. Now.” Kanye West burst from the dance-club-sized speakers.

  I had watched Carly throughout the reading. She sat on the edge of the dais, with one of her aides and therapists. Carly never looked up at the screen once. Rather, she sat unusually calmly with her delicate ankles crossed; her elegant taffeta dress billowing around her. She had the pensiveness and composure of royalty. She looked down at her hands clasped on her lap, blowing breaths through pursed lips. Clearly she was making every effort to sit calmly. Or was she basking in the knowledge that, after waiting thirteen years, she had finally been heard?

  A friend of ours who had known Carly since childhood approached me later that evening. “I will never look at your daughter the same way again,” was all she could say before she drifted back into the crowd.

  And neither would I. Carly was standing just outside the group on the dance floor, those who were laughing, clowning around, and drinking. She stood apart but closer to the crowd than she had ever been, clearly content, even proud, maybe for the first time in her life. She smiled as friends grabbed her arms and danced her around in circles.

  I observed the scene, briefly removed from the festivities and reflecting on a comment Carly once made about her ill-functioning mouth and her wish that we could “fix her brain.” I watched my daughter that night—able to move people with her words—and I realized that not all that is broken needs to be fixed.

  17

  Pilgrimage to the City of Angels

  Hi Ellen.

  They say that one of the greatest gifts in the world is someone’s voice and I can’t believe it but you lent me yours.

  I know I have thanked you a thousand times. But I feel like I still owe you your birthday wish.

  I was watching your show for the New Orleans party and I know your birthday dream is to give people without a place to live a home. It would be so sad not to have a home. I love my home.

  I wish I could twirl my magic dream wand and give all the people without a place to live a home. Or I wish I lived closer so they could stay at my house. They can sleep in my parent’s bed and my dad could read them stories. They might like that. His stories always cheer me up.

  I might not have a magic dream wand but I want to make your dreams and the people of New Orleans’ dreams come true. I was given money at my party and I was told I could do whatever I want with it. I was going to use it to fly down and see you so we can hang out. But I wanted to give the money to you and the people of New Orleans instead so they can make it right.

  I am sending you $550.50 since you turned fifty years old. I know it’s not enough to build a house, but I hope it’s a start.

  I think Howard was right when he says that if you believe in your dreams it will come true. Maybe, just maybe, if we want it bad enough all the dreams of the people in New Orleans will come true too.

  I hope you had a great birthday with Portia and I hope I helped make one of your dreams come true.

  Keep dreaming.

  Love,

  Carly

  Carly seemed to take the notion of her bat mitzvah to heart. After her experience with Ellen and the emotional response she received from the speech, Carly’s writing—and so I assume her outlook on the world—matured. She continued to have the same physical struggles such as disrupted sleep, paralyzing compulsions, and mannerisms stereotypical of people with autism. But her voice was transforming. We started to see more playfulness and a greater concern with the world around her, and the events of the following months fueled this momentum.

  Tammy had begun an annual ritual of taking Taryn to visit cousins in Los Angeles over Taryn’s midwinter break several years before. It was a way of balancing out the time Tammy spent keeping Carly’s world spinning on its axis—time that could not be spent with Taryn. I never really understood the enthusiasm the two shared for the city. To me, LA was a sprawl, and other than a few friends, I had little connection to the place. This year, however, we decided to take a family trip—something we hadn’t done in several years.

  Travel with Carly still stirred enormous anxiety in me. I had a flashback to the trip a year and a half earlier when Tammy, Taryn, Carly, and I had gone to New York to see a neurologist for Carly. Taryn and Tammy stayed on in the city for a few days and I flew back to Toronto alone with Carly. Although it was only a one-hour plane ride, the ordeal of customs, security, the flight, and luggage claim with Carly’s unpredictable behavior made me so tense I wasn’t eager for a repeat experience. Could a week in LA actually be called vacation? But Howard agreed to join us and as our Carly whisperer, he had an enormous calming effect.

  In fact, the flight was uneventful with Howard keeping Carly occupied with her iTouch, games, and snacks. One of her compulsive actions—a means of calming her inner turmoil—was to shred paper. During the four-hour flight she pulverized three magazines. But we made it. Carly later told us she worked extra hard to hold her outbursts in check and to remain calm because she wanted to prove she was capable. She was particularly motivated because our friend Charles had helped us to get tickets to Ellen’s show and the opportunity to meet her briefly before the taping. This vacation was not only a chance for Carly to be part of her family, but a chance to meet her hero.

  We checked into the hotel and to our surprise, the two rooms overlooking the parking lot had been upgraded to a suite the size of our house. Charles’s network of friends seemed to have no bounds; we learned that the hotel’s general manager was a friend, and he went all out to make us fe
el welcome.

  We settled into the hotel and the kids went for a swim in the pool with Howard. Tammy and I planned out the week’s agenda. We had to balance squeezing in as much sightseeing and socializing as possible with the unknown of Carly’s ability to handle it all. The yin and yang of life with Carly follows us everywhere.

  Yet we had underestimated Carly, again. Through the week, she rose to the occasion. At Charles and Richelle’s, where we went for dinner, she played hangman on her computer with Matthew, Taryn, and the Boltons’ kids. She was in good spirits as we drove around the city and through the hills and canyons that characterize LA, later commenting, “mom drove around and around so much I thought I’d throw up.” Our nights were uninterrupted and we were able to eat in restaurants without hasty exits or excuses.

  During the week, we went to visit a small school started by a woman Tammy had met on a previous trip to LA. Patricia and her husband had been actively involved in autism advocacy since their son was diagnosed. The school consisted of four students and was run out of a carriage house adjacent to the family’s home. Carly and Howard spent the afternoon with them, going on a field trip to the Museum of Contemporary Art.

  Later that evening, Howard said, “Carly did great. She particularly seemed to like Lichtenstein and stood staring at his paintings for a long time.”

  I wondered how Carly’s eyes might process the unique style of the artist: his use of tiny black dots in combination with comic book images. Did she view art the same way as I did? Her ability to absorb visual information was so different, perhaps she saw color and images uniquely, too?

  “I see them in streaming colour and flashing images. Duh,” she scoffed at me.

  Howard smiled at her and I realized I was the butt of her joke.

  “She got along great with the other kids,” he said. “She was writing with them all afternoon.”

  Howard showed me a picture he’d taken of Carly sitting on a couch, her arm around a teenage girl’s shoulder. At home Carly had no peers with a similar juxtaposition of talent and challenge. She had no kindred spirit with whom she could commiserate or even hang out, and I wondered why this was so. Was it that these kids were so unique? Or was it that kids with Carly’s diagnosis in Toronto just don’t typically receive the depth of therapy that she did and therefore never discover their voices? In LA, autism seemed more mainstream to us and the range of services more abundant. Carly finally had friends, but sadly they lived three thousand miles away from us and their continued connection would have to be online.