I spend a lot of time reading about autism. I read blogs, articles, facebook pages, you name it. Sometimes it irritates my family when they see the housework going undone and me sitting with my laptop. And I can understand that feeling. Sometimes I even get irritated with myself when I sit down to read one thing right quick, and a dozen links later I realize that I have let several hours get away from me. But there is a reason for it. Every once in a while as I am reading, there is a spark, a click, something snaps into place and I see things differently. I put one more piece of the puzzle into place, and it helps. It helps me, it helps the world, and it helps Boo.
Yesterday I found myself reading this blog post written by Rachel Cohen-Rottenberg, a writer who has autism and who wasn't diagnosed till she was 50. The point of the post was about the fact that people with disabilities who have the ability to overcome them and "pass" for a period of time, become expected to be "normal" all the time, or are believed to be "making up" the disability in the first place. It was both moving and fascinating for me. But in the midst of it, I read a line that stopped me in my tracks. In explaining the amount of energy and concentration required for her to "pass" as a neuro-typical person, she said, "I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech."
I hit me upside my head like a 2x4. I thought about Boo's speech patterns. I thought about the way that he uses 57 words to explain or describe something when 3 would do. The phrase "all of the words flowing like an endless caption in my head" hit a nerve. I remembered the descriptions I'd read about the way in which many people with autism "think in pictures." I considered that while my thoughts are language-based, showing up in my head as words, Boo's thoughts often seem to be conceptual or associative in nature. Something he has to translate, much as one might translate sign language into spoken words. You know how they say a picture is worth a thousand words? Imagine thinking in pictures and being expected to translate those thoughts into as few words as possible. I thought about the way that he gets so frustrated when he gets interrupted or when the words don't come out just right and it causes him to go back to the beginning and start all over. I thought about how frustrating it is for me to listen to it day after day. How often I attempt to somehow get him to abbreviate the soliloquy. I realized that I have been doing exactly what this woman was describing; forcing him to "pass." To behave as though he doesn't have autism. To appear as though his brain works like mine.
For the first time I realized the weight that is placed on my little boy's shoulders. I considered that what I have been doing with him for the past 14 months, though it comes from a heart of love and a desire for his long-term well being, was adding to that weight. I have been trying to "fix" him, to a degree, without realizing it. Though I understand on an intellectual level that autism can't be cured or fixed, that his brain is wired in a different and unique way that is never going to be altered...
My son is an amazing person. He is full of sweetness, tenderness, love, compassion, joy, laughter, curiosity, and intelligence. He has the biggest heart of anyone I have ever known. He inspires me daily. But the struggles he deals with also scare me. I fear for him because he is so tender, and because he so deeply craves relationships with others, just as we all do. I fear for him because he is different and kids are cruel. When I see his more difficult "symptoms" rear their ugly heads, I don't see today...I see tomorrow, next year, five years from now. I see him sitting alone at a lunch table. I see him chosen last when teams are picked in P.E. class. I see him listening to his friends on Monday talking about the fun they had over the weekend while he sat home alone uninvited. And when I try to teach him to behave more "normally" I am trying to spare him that future pain. To teach him to "pass." But in trying to spare him pain tomorrow, I am causing him pain today.
I remember how I worried so much last year when Boo first began attending preschool. That first year he went two days a week, just three hours at a time. And he excelled. He soared! He appeared so "typical" that his teacher seemed confused by the IEP and scoffed when I started talking about having him diagnosed. But what no one else saw was how he completely fell apart when he would come home from school. Even then I surmised that it was taking so much out of him, that he was trying so hard to fit in, that he used up all of his emotional reserves to do it. And it broke my heart because life shouldn't be so hard for such a little guy. He should just be able to be himself and that should be good enough for the world. They should recognize his awesomeness just the way he is.
I have been thinking about this all day today. Considering and stewing. And what I have determined is this: My job as Boo's mother is not to help him fit into the world. My job is to help him capitalize on his strengths and maximize his abilities. And my job is also to help the world accept him for who he is. He shouldn't have to pretend to be what he isn't. And that is a part of what this blog is all about. I have been learning so much this past year. I have learned from others who have been there and done that for much longer than I have. April is Autism Awareness month and I've contemplated what that means to me. I've thought of the many people who have become my friends even though we've never met or spoken. People who have educated, informed, inspired, cheered, and enlightened me. The Autism Community is an amazing thing. I still feel like an outsider often times, like someone standing on the outskirts and feeling my way around. Most of the time I have no idea what I'm doing and I go on instinct. But there are people out there who have thrown me virtual life-lines. I want to introduce you to a few of them. Please take the time to visit Mom-Not Otherwise Specified, Diary of a Mom, Running to be Still, Try Defying Gravity, and Stimeyland. This is just a drop in the bucket of the blogs and resources I have learned from, but it's a good jumping off point. The great thing is that you can pick one and then start following links and learn so much more than you ever dreamed there was to know about Autism and the people who live with it!
My goal is to help to create a world where Boo doesn't have to work so ridiculously hard just to be Boo. If you haven't been personally touched by Autism, you should open your eyes. Because I can promise you there is someone in your life who is living with it. A relative, a friend, someone at work, someone at church, the person who rings up your groceries, someone in your child's class at school, the person on the next treadmill at the gym, or the mother you passed by while you were shopping. Someone whom you encounter is touched by Autism. And I want you to begin to learn what that means. What it looks like, what it feels like. I want you to be equipped to be a friend, a teacher, a helper in whatever capacity you can. And I want you to raise your children to be compassionate and understanding and accepting. I want you to help me create a world in which Boo can just be Boo, and that will be enough. Won't you join me?