This is an excerpt from CARLY’S VOICE by Arthur Fleischmann with Carly Fleischmann. Copyright © 2012 by Arthur Fleischmann. Published by Touchstone Books, a division of Simon & Schuster. Reprinted by permission. All rights reserved.
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. 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. 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.
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. 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. 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.
My first voice output device was big and only let me use eight symbols at a time. Howie made a book with over a hundred symbols and categorized them to put on the voice output device when I would be in different situations. Wow, to think about it, Howie had no life. Just joking. He had a girlfriend at the time, who he later married.
A little bit after I got my first voice output device, I was already growing out of it. My parents, with the guidance of Barb and Howie, ended up getting me a computerized voice output device (Called a DynaWriter), which changed my life. The voice output device had words scrolling at the top of the symbols. My photographic memory started taking in those images/words.
I find it weird, but I have never been asked what was going through my head the first time I spelled. The truth is I was feeling sick the first time I spelled. Howie pulled me over to Barb and I just felt achy all over. I remember thinking I didn’t want to use my voice output device, so why are they making me? I knew Howie wasn’t going to let me go without getting me to say something. I just wanted them to know I was not in a good place and then, in my head, I saw the word help, a word that had been on the main page of all my voice output devices since the beginning. I started to spell it H E L P. I then pulled away to lie back on the couch when Howie pulled me back. I think they were shocked and I, well, I didn’t really process my accomplishment yet. I felt really nauseated and threw up a little in my mouth when Howie pulled me back to spell. I was placed in front of the voice output device again and, well, you know, I wrote teeth. In my head, I was just trying to think of a word that would describe what just happened in my mouth. In hindsight, I should have written the word mouth, but I was just a kid.
I didn’t fully understand what I had done until a day or two later. It took time for me to process that part of me, again. I was proud of my accomplishment but did not know how really big it was. It would open a world for me I really wasn’t sure I wanted to be in. Don’t get me wrong. The ability to communicate my wants and needs is great, however, with great abilities comes greater expectations.
A month after I started typing, all new and creative programs emerged. I remember my silly brother Matthew running around my house with a label maker labeling everything. Howie made me look at every word I walked by.
Just to tell you how crazy my brother and Howie were, they labeled the toilet and every time I sat down, Howie made me point to the word. It was really crazy but helped me start to audio filter the label with the word.
As the months went by, I started to get new voice output devices that would help me showcase my newfound skill. I started using a device called a Lightwriter that made me feel like I was even more different than everyone else. I got more strange looks than curious looks. After I kept pushing away these devices, Howie looked into getting a computer for me. He found an amazing program called WordQ that had word prediction and also had the feature of text-to-speech so I could have a conversation with anyone in a room or around the corner.
My ability to keep the amount of focus and concentration I needed to type was always a challenge. There were times I would just refuse to type for days and months. I never thought of it as giving up or quitting but more of taking a small break or rest. I know what you’re thinking. How would I expresses myself or get my needs met if I couldn’t talk. The fact of the matter is I found not talking a challenge, but I think it was also easier in ways. I was able just to run in to the kitchen and grab what I wanted or just point to something and people were so glad I pointed, they would just give it to me.