"Either it's a hoax, which it isn't, or we are grossly underestimating tens of thousands of people."
-David Mitchell, translator of The Reason I Jump
It's as innocuous as it is common. "He talks so well!" people gush over my youngest son. Mostly because he is small for his age and they assume he's younger and therefore advanced to be speaking in sentences. No harm is meant, I know, but I cringe every time I hear it. Yes, it is adorable and humorous and downright helpful when our children learn to talk and begin expressing themselves. But I'm also the mother of a child who doesn't talk well, who has never been gushed over by strangers. I struggle because every day I'm confronted with this misplaced belief that verbal communication equals intelligence, that a child who looks away and makes sound effects when asked a question must be less smart, less capable than his brothers who are able to engage in conversation. But it's simply NOT TRUE.
All of my children are beautiful, smart, capable, lovely people. They each possess skills and they excel in certain areas, just as they struggle in others. But if they can communicate in the way we understand, in the language and social context that most people use, then they are perceived as having worth. Yet words aren't the only means of communication. Often words are the least reliable way to communicate. There is behavior. There are gestures. There are emotive sound effects and pictures and facial expressions. And this is why autism awareness and acceptance are so important to me. Because my wonderful son belongs to a group of people who are continually underestimated and deemed unworthy of time and expense and humanity.
This is something that I have learned over the years, as I have read and searched to understand my son. I first found it in the works of Temple Grandin, whose memoir is aptly titled Thinking in Pictures. She doesn't think in words, but sees pictures instead. Another author, Daniel Tammet, describes numbers as a series of images. His book, Born on a Blue Day, is full of illustrations. Just recently I finished The Reason I Jump by Naoki Higashida, who describes memory as a circle and it finally clicked into place. For James, words are a second language. There are some days when he speaks very well; his words are plentiful and his expression is clear, and on those days it is all so blessedly easy to understand each other. So why are there other days when he doesn't seem like he wants to talk at all? Why does he respond to me differently and return to his large vocabulary of sound effects? Because that's his first language. When he uses movie quotes instead of his own words, it's the emotion behind them that he is trying to express. How I wish I could be inside his head on those days, to really understand what it means to think in pictures or circles or colors. It reminds me of my trip to Europe.
My dad loves to tell this story, although he wasn't there, and when he does it makes me feel very stupid, which is not a fun feeling. After flying into Germany and spending a few days with friends there, my mom and I took a train to Paris. It was the end of a long day of travel, of navigating a new city to secure a hotel for the night, of arguing with my mom, and finally we sat down in a restaurant, ready to eat and relax. We perused the menu (in French) and I tried my best to translate for my English-speaking mother. We placed our order, but Mom was displeased when the food came out and our waiter placed a raw beef patty in front of her. She looked at me in alarm and said, "I'm not eating that." And so I turned to our French-speaking waiter and opened my mouth to explain, only the words wouldn't come. I had studied French for years, to the point that I was fluent. Sometimes I even dreamt in French. But we had just been surrounded by German, a language I am familiar with, but not as well, and I was tired. The meat needs to be cooked, I thought in English. Kuche, I thought in German. Hot, in English. Kitchen. Pan. Skillet. My mom was getting agitated that the raw meat was still sitting there, the waiter's forehead was creasing deeper, and I could not for the life of me think how to communicate in French. I want to say that it took hours to sort it all out, because that's how long it felt, but it may have only been five minutes. Eventually, the meat was taken back to the kitchen and returned a nice, brown hamburger, and the rest of our stay in France went smoothly. Now I ask you, am I stupid? Because, of the three languages I was capable of speaking in that day, the only two that came to mind made no sense to the waiter? Or is mastery of language a tricky skill for anyone, and in moments of distress, difficult to access?
Naoki Higashida was 13 years old when he wrote The Reason I Jump, and was described as non-verbal. Meaning he was unable to speak to communicate. Yet he could write a book that was both creative and informative when given the right medium to do so. It makes me wonder how much uncovered potential my own autistic child possesses. And beyond our own community, it makes me wonder how this narrow view of communication affects other people who don't speak well, people whose voices are limited due to physical impairments like being deaf. What are we missing by not seeking out and supporting those who aren't like us?
It was a huge deal the first time James told me he loved me at the age of six. Of course it was. But it wasn't new information, just a new way to communicate. He had told me thousands of times that he loved me, by touching my face, by kissing my cheeks, by inviting me under his dark blanket and showing me his toys, by sitting on my lap, by sleeping on my lap, by holding my hand, by running into my arms when he was scared, by pointing out fans and dogs and the moon. When he said, "I love you Mommy," it took all my strength not to say "I know" and inwardly exult in my Han Solo moment, but to say, "I love you too." And as much as I love hearing him speak my language, as important as it is for him to learn these words to succeed in this world, I'm learning to speak his language too. Because the best way I can say "I love you" is to meet him halfway.
This is a link to a website that features Naoki in a video entitled "I Write, So I Am Alive", as well as other videos explaining Facilitated Communication. Watch, it's fascinating! http://soe.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/Videos.aspx
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