Recently I wrote about Jonathan's pal Mike, a boy with Autism in Jonathan's class. Mike doesn't use spoken words to talk, instead he uses a letter communication board when conversing with others. Many would say he is non-verbal because he doesn't talk "out loud" or use verbally spoken words, but Mike has a very real and special voice. Back in March, I read Mike's personal memoir (a class assignment) at the 5th grade "Coffee House" and was so moved by Mike's voice that I asked him if I could post it to my blog. This is a story that brought me chills. This essay is a rare and beautiful glimpse inside the mind of 5th grade student, a student who brings us his profound voice through his writing. Please share the link with everyone you know. Mike's voice is one that is rarely heard in our society and one that really needs to be shared. Mike said he was willing to share "something so personal so that it might give a voice to those who do not have one yet.”
My Escape from Prison
“Touch the bowl,” Sara said. I knew what a bowl was. The other things on the table were a cup and a ball. But my mind could not translate the knowing of that into making my hand touch the bowl. We had been working on this drill for weeks. I was bored out of my mind. I did not know how I would ever break free from this torment.
In February 2012, I met Miss Soma. That meeting changed my life in a way that I could never have imagined.
The way I felt before I met Miss Soma must be described as a prison of my thoughts without a door. The way I behaved was very hard for those around me because I could not do so many things. I could think, but no one knew, so everyone thought I was dumb. That set me off sometimes which just had the effect of making people think that I was uncontrollable. Sometimes I would even scream like I was being tortured because not being able to communicate seemed like the torture of being in a prison camp with no hope of ever getting released.
Since I was two, I had been taught using Applied Behavior Analysis. This way of teaching was so hard for me because it consisted of me choosing pictures or objects that matched the question asked. If I got it wrong, I had to keep doing it until I got it right. The thing was, though, that I always knew the right answer, I just couldn’t always make my hand touch the picture or object that I knew was right. It was so sad to me that I could not communicate that I knew the right answer. I wanted to run away but there was no place to run for a person who could not communicate enough to even buy a bus ticket or have enough motor coordination to hold up my thumb to hitch hike.
I was three years old when I realized that I could not talk like my younger sister. I was wanting to express my thoughts so desperately but no words would come out when I tried. It felt like I was fighting with my mouth and it would not move. It was as if I was in a boxing match where my brain kept getting knocked out and the heavyweight never flinched despite the onslaught of blows from my brain.
I loved my sister, but I wished with all my heart that it had taken her longer to talk so that we could have continued to both be without words, because then I would not have stood out as much to other people. As it was, I felt like an animal in the zoo that everyone gawked at thinking the animal didn’t have feelings.
My mom saw Miss Soma on 60 Minutes and talked to a friend at her high school reunion that had taken his daughter to see her. My mom also ran across Miss Soma’s name on the internet when she was researching about treatments for nonverbal children. My mom believes that if she hears about something three times, she is meant to follow through with it. So my mom decided to make an appointment for me to go to Austin to meet Miss Soma. My mom wanted to see if there was a way for me to communicate. This was important to her because she really wanted so much to know my thoughts. What she didn’t realize was that I also longed to tell her my thoughts. But when she made the appointment, she didn’t tell anyone, because she was worried that Miss Soma’s method wouldn’t work for me.
My mom and I flew to Austin on February 20, 2012. I was very nervous to meet Miss Soma and I think my mom was too. The flight felt longer than all the years of the therapy combined because I had hope for the first time in my life and I was deathly afraid it would be dashed.
We spent the night in a Residence Inn and waited for the morning. I did not sleep at all – I kept tossing and turning trying to imagine a world in which I could communicate. It would be a world filled with conversation and understanding. And I would be included in the beautiful world where friendships grow like flowers in a garden when the spring rains fall.
The next morning was a bright and sunny Tuesday. In the daylight, my dreams from the previous night seemed ridiculous -- like the dreams of a mad person.
We drove over to Miss Soma’s office. I was surprised that it was such a small inconspicuous brown brick building. The parking lot only held four cars. We parked our rental car, got out and walked down the tiny sidewalk to the front door. How could such a nondescript building hold any kind of miracle for me? I almost wanted to run because I didn’t want to endure my mom’s tears of disappointment that would fill an ocean.
We went in and I saw an old green couch and a small room with a video recorder. My first thought was that this was a cruel joke in which the villain that tricked us would laugh hysterically at our being so naïve that this place would help me to talk.
The next moment, a small Indian woman wearing a sari and a denim shirt greeted us. The shirt had “HALO” written on it. “HALO” stands for “Helping Autism through Learning and Outreach”. Miss Soma was this woman. She took me and my mom into the small room. She didn’t seem friendly, just very serious. I would later learn that this was her life’s work to help children like me.
Then the most amazing thing happened in that small room. I told Miss Soma that my favorite color was fire orange. It was the first time that I had ever told anyone anything about me. I was really free of the prison and I was determined to get all my thoughts spoken from then on because I had nine years to make up.
Miss Soma used letter stencils that I had to touch to spell out words. This was hard at first because I had to use my hands which I wasn’t used to using this way. She started with stencils that were A to I on one board, J to R on the next board and S to Z on the third board. I had to first tell her which stencil board I wanted and then push the pencil through the right letter. It was such a laborious process, but I could see that this was my route to escape my prison of unspoken thoughts. My mom was amazed that I knew the order of the alphabet and knew how to spell so well.
Then I progressed with Miss Soma to using a stencil with all the letters but still using the pencil. Finally, I was ready to use the letter board and my finger pointing to the letters instead of a pencil. I told my mom that I missed my family and I couldn’t wait to go see them again. This was the best moment of the escape, like the joy of a prisoner emerging from Alcatraz.
Now it is easier to type with my letter board. My family is so excited to know my thoughts and feelings. But every new person that wants to talk to me with the letter board has to go through a process of me getting used to their rhythm. I have to concentrate with all the strength of Hercules to learn a new rhythm. For instance, it took my mom four months to talk to me after Miss Soma. Now it usually takes only a couple of weeks to learn with a new person, except that is has taken much longer with Mrs. Mohammad.
Working with Miss Soma freed me of the torment of knowing things but not being able to show them. My life has become so amazingly rich. I can now learn to talk to anyone. My experience shows that just because someone can't speak, it doesn't mean that they can't think like others. It just takes extreme patience sometimes to reach your goals.
After I could talk, my mom asked me how long had I been able to talk. I answered, “A long time. I was just waiting for you to figure out a way how.” God was heavenly smiling on my mom when I told her that.
About the Author (also written by the author)
Michael Keller is an 11 year old boy living in Gaithersburg, MD. He attends Carderock Springs Elementary School. This is the first year he has attended a typical school. All his classes are now typical 5th grade classes except for math where he has been placed in a 6th grade class. He holds no grudges that those around him did not know he had a sound mind. He tells this very personal story so that he might give a voice to those who do not have one. His hope is that his story will open the minds of many to the hidden minds of those who cannot speak. He asks all who read this to pass on the word.
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