Carly’s Voice

by Arthur Fleischmann

  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.

  Tammy and I have been asked how we do it. What keeps us moving forward? Sometimes it’s just inertia. But we keep sight of Carly’s dream to be accepted. She wants to live life fully, accomplish great things, and not be pitied. She just wants to be understood. What else can we do? We get up in the morning when the alarm goes off. And never accept “no” or “maybe.”

  Still, there are days where one step forward is met with two back; I have not yet returned to the days of peaceful sleeps, awaking in laughter. That is the real price of autism. It’s not the money required for education, therapy, and staff. Or even the forgone opportunities. The real cost is the lack of security we feel in our lives together—as if we are perpetually stepping onto slick ice for the first time, never sure of our footing and what catastrophe may await us.

  It’s been fourteen years since Carly was diagnosed with autism and cognitive impairment. We were warned that she might never develop abilities beyond those of a child and would likely spend her life in a group home. Carly has defied most predictions and lived a life out loud, to paraphrase Émile Zola.

  These days, I think more about what’s still to come than what might have been. I tiptoe into Carly’s room and whisper in her ear as she sleeps, “Everything will work out. Everything will be fine.” Then closing her door gently, I slip into bed next to Tammy and pray that I’m right.

  Epilogue

  The world looks beautiful when we walk with our eyes open.

  —Carly, June 11, 2009

  From the Horse’s Mouth

  (Grammar and spelling edited for clarity.)

  Wow, I can’t believe you made it all the way to my chapter of the book! So tell me the truth. You really didn’t end up reading all of my dad’s boring writing, did you? There could only be three explanations for how you ended up at the end of the book, reading this chapter.

  Okay, so option one is you bought the book and while you were opening the book, it fell to the floor and landed on this chapter. THANK GOODNESS FOR YOU.

  Or option two, you started reading the book and got so bored that you just wanted to know how the story ends and you turned to the last chapter and found out who wrote it. Now you’re so happy that you are not going to put down this book until you finish this chapter.

  Or option three, you read the cover jacket of the book that says my dad will pay you $100 if you read the whole book from top to bottom and fill out the online quiz.

  Ha ha, made you look at the cover jacket.

  All joking aside, I love my father and feel so honored to have him share my story with you, the reader. People have always called me a miracle child, but the truth is, as you read in the book, my spelling really did not come overnight. It took lots of hard work, time, and devotion to get where I am today. My father and mother have always been there for me and thanks to their hard work and dedication to me, I am able to share with you my inner voice.

  So, why do I call my voice my “inner voice”? The truth is ever since I was a young child, I talked. The words never flowed out of my mouth or came out of my head to be shared with the outside world, but I talked to myself in my head. The earliest thought I have of me talking in my head and wanting to share something with the outside world was when I must have been five or six years old and my nanny was in the kitchen making some food for Matthew, my brother, and Taryn, my sister. She was asking them what they wanted to eat. I remember my brother replying first and then my sister yelling in her idea. I recall telling her in my head that I wanted Kraft Macaroni and Cheese. My nanny at the time repeated the orders back to my brother and sister but never repeated mine back to me. I think
that was the first time I really realized that my outer voice wasn’t like Matthew’s or Taryn’s. I remember thinking at that point in time that I was different. I kind of knew it, I guess, but never really realized it until that day.

  So, as you can see, I always had a voice. It was just inside of me. I would talk to myself and even reply back to people sometimes even though they couldn’t hear me. My voice was always special to me even though it was only for me to hear. I remember thinking that if I could get my inner voice out and share it like Matthew or Taryn, then maybe I wouldn’t be so different. However, my inner voice stayed inside of me for over ten years of my life. I do believe we all have an inner voice and it’s just trying to find its way out.

  The day after I realized I was different I also started to see other small differences between my sister and myself. She would be able to sit in front of a TV for hours. I couldn’t understand how she was doing it because when I attempted to do that, I would have information overload.

  Sticking a brush through my hair felt like someone was ripping my hair out strand by strand. Yet my sister would sit and brush her hair like it was no big deal. Occasionally, my mother or father would have to yell at her to do it, but she was still able to do it without any problems.

  The smell and sensation of different foods would always present problems for me. However, it never seemed to be an issue for my sister or brother. One of the biggest things I noticed was that they would always want to be touched or hugged or to roughhouse with each other. However, any time they tried that with me, it felt so constricting and overwhelming that I needed them to back off. I could never understand how they were able to do all those things I couldn’t.

  Life at that point started to even seem more different than my siblings. I realized that I had therapists come to my house every day getting me to do things that seemed to come so natural to Matthew and Taryn. I remember thinking that I wished that I would be good at something that they weren’t, so they would have to have a therapist come in to teach them something. I used to share a room with Taryn, and every morning she would get dressed all by herself and run into the washroom to brush her teeth, when she remembered to. I can remember for me every day one of my therapists would come in and work on how to put on clothes. It felt so hard. I hated the feeling of taking off my clothes and the feeling of putting on cold clothes. During one of my sleepless nights I remember turning on the light in my room and trying to put on my clothes all by myself. I think I forgot my underwear and couldn’t do up the button to the pants and had my shirt half on as I started to wander down the stairs to see if I could find some food. I think that’s when my mom found me and sent me back to bed. She was so tired and didn’t even realize my makeshift accomplishment.

  Later on in life I started to realize that I was taking in information a lot different than the typical children around me. I always had a hard time understanding what people were saying. Even as a young child I would only be able to understand one or two words in a sentence that someone was saying to me. I now realize it wasn’t that I didn’t understand the words, it was that my brain couldn’t focus directly on the conversation.

  Let me break it down for you and set a picture up in your mind like they do on CSI and those other TV shows. Picture yourself in a coffee shop with just one other person. The person starts talking and you are able to focus directly on what they are saying. For me that is a different case altogether. The woman who brushes along our table leaves an overpowering scent of perfume and my focus moves. Then the conversation over my left shoulder from the table behind us comes into play. The rough side on my left sleeve cuff rubs up and down on my body. That starts to get my attention, as the whoosh and whistle of the coffee maker blends into different sounds all around me. The visual of the door opening and shutting in the front of the store completely consumes me. I have lost the conversation, missing most of what the person in front of me is talking about. With more scents to smell, more overwhelming visual input coming in from the coffee shop, and more audio conversation from people talking at other tables in the room, I find myself only hearing the odd word the person in front of me has said.

  So I know what you are thinking. With all those things going on, how do I drink my coffee? Just joking. How do I understand what people are saying? About a year and a half ago I coined a term called audio filtering. Lots of people with autism do it and it’s something we learn to do on our own. I don’t even think doctors, scientists, or psychologists even know we do it.

  Audio filtering is hard to master, and some people who audio filter only manage to use it a little bit in their lives and might not be able to control when they are doing it. The best way to explain audio filtering is to bring you back into the coffee shop. Imagine having a DVD remote control programmed in your brain and when the conversation starts you can pause, slow it down, rewind, or skip things. Now just because you can do all those things does not mean you understand the conversation. You now have to be able to pick out and understand everything that is going on around you, including other conversations, before you start to understand yours.

  For lots of people with autism, this can take days weeks, months, and even years. For those parents, educators, or doctors reading this book, think of one person you know with autism. Have you ever seen them, in a room, start to laugh or cry or get mad or even scream for no reason you can pinpoint? The reason you can’t pinpoint it is because they are audio filtering. I have learned to audio filter a minute to two minutes after a conversation has started. It’s harder being in a big hall or movie theater or a stadium where it can take longer and can become very overwhelming at times.

  Let me clarify something. Audio filtering isn’t just for sorting out audio input. It also helps sort out smells, physical touch, like a rough shirt cuff, and also visual input. I think audio filtering is ingrained or hardwired into the brains of people with autism. We just have to figure out how to use it and control it.

  Communication was a big goal of mine, but at the same time it was a big goal for everyone around me. Barb, my speech pathologist, was working on many ways for me to communicate ever since I could remember. I recall having popsicle sticks jammed in my mouth and being taught how to use my hands and fingers to do signs for sign language. It was always hard and, to tell you the truth, frustrating at times. I can almost picture the first time I was introduced to using picture symbols. I remember thinking, Wow, I point to a picture of chips and someone just hands it to me. That, to me, was amazing. The first time I communicated, I asked for something and I got what I asked for. Now the hard part I understood, but with everything going on around me how do I duplicate it or do it again? I took a while to get the hang of it. At first I found it was hard to stop my impulses to pick other picture symbols that weren’t the ones I needed at the time. For example, I would want to tell someone that I needed the washroom, but the chip picture always looked too inviting to ignore.

  As the years went on I was introduced to Howie, who would become an important person to Barb and me. I think Howie, like Barb, always believed I had something important to say and wanted me to find a way to get it out. Howie and Barb would always come up with neat ideas for me to communicate. One of the things they came up with was a big binder that they made me carry around my house and school that had picture symbols all throughout the pages. The picture symbols didn’t only have pictures on them, they had words streamed across the top. Those words would lead me to spelling, but that’s for another paragraph.

  I recall Howie asking Barb in my classroom what was the ultimate goal for me to communicate? Barb turned her head at me and then back at Howie. She began to say, “Carly is six and for now, I think we need to focus on picture symbols because I think the long-term goal is to have Carly use a voice output device.”

  Howie had only worked with me for a couple months at this point and I think he wasn’t too sure of me, at first, but when Barb mentioned a voice output device, something must have clicked in Howie’s head.
That day, and for the next weeks and months, Howie pushed picture symbols over and over again. A lot of my days at school had to do with programs that taught me the meanings of the symbols or how to use the symbols to express my wants and needs. I was always good at identifying pictures, but because I wasn’t fully able to audio filter, I didn’t always understand the full label for the picture.

  The way I understand it is, my mind works differently than most people’s. When I see something, I take a picture of it and it stays in my head. This is why I have trouble looking at people’s faces. When I look at someone I take over a thousand images of that person’s face in less than a minute. Now think of my brain as a digital camera. The more I look at someone’s face, the more pictures I take. Because I take so many pictures, my brain or, as in my example, the camera gets full. I am no longer able to process the pictures or images and I am forced to turn away. That is why, for most people with autism, you will see their eyes wandering or face moving in a different direction when you are talking to them.

  Because of my ability to take pictures of people, objects, and images, the picture symbols Howie introduced every day stuck in my head. My progress was not slow but not fast. However, midway through the school year, Howie convinced Barb and the school board that I was ready for a voice output device. I think the day I got my voice output device was a big moment in my life, and I did realize how much work and effort I was going to have to bring to the table. Looking back, I worked over and above what most children do in a day. Using ABA, Howie and Barb worked on their own program to teach me how to master the voice output device. From day one, Barb and Howie would only hold my hand to teach me where the symbols were. Once I learned the location of the symbols, Barb made sure no one would help or assist me when I used my voice output device. Even though my fine motor skills prevented me from holding a pencil, I was always able to point and target images. Barb and Howie wanted people who were around me to know and to see that I was able to do this all on my own.