Thursday, May 26, 2011

Martin and my bubble

There is a 7 year old Mennonite boy in Wooster, OH that has Autism. His name is Martin. I met Martin 5 years ago because he is the son of a religions professor, who is also the "host mother" of my then boyfriend (from Pakistan) in College. When I met Martin, he was quiet, focused, had trouble talking, and loved to do the same things over and over again in glorious little routines. To be honest, I loved Martin. He was just about the coolest little kid I had ever met (and that is saying something cuz I don't like little kids all that much). About the same time when I left college, which is when Martin was 4, he was diagnosed with Autism. I didn't think much of it at the time. But both of his parents started blogging about Martin and his "adventures". For years, I have been fascinated with the stories in a way that I have never been engrossed in anything else before. I just don't care about what other people do or write about. Mostly because I don't understand what they are thinking or why they are doing things. But here is this little boy who I UNDERSTOOD. His parents have a lot of trouble with him. Martin is difficult, to say the least. But over the years, as I have read from afar his journey, I have felt a connection with him that I could never explain.

As I have been digging into my own past and realizing how my own difficulties with Aspergers effected my childhood, I have learned a lot of things about myself. This evening when I read a recent update on Martin, it suddenly struck me.... I completely get it why Martin does and says the things he does. Because I said and did the same things. I find myself reading between the lines and seeing the words left unsaid that Martin needed to hear, and the feelings that he had that left him without control, and the things that happen around him that completely overwhelms him and the feeling of being trapped because you just don't know how to grasp it, let alone deal with it, and then be held accountable by someone else. You don't have the words. You can see things and feel things, but you can't describe them or name them. Everything is happening around you in a way that makes you feel like you are in a bubble. The bubble is glorious! Its just you. And your activities. And your routines. You NEED it all to feel safe. You NEED it all to feel like something is in your own control. It is joy to work on your projects and be totally lost in it. You can do things that no one else seems to be able to do. But then, usually no one understands why that is so cool, which is unfortunate. But what does it matter? It makes you happy!

ASD is both an extraordinarily blessing and a curse. Sometimes when I emerge from my bubble, I momentarily have this clarity and find myself fitting in with the rest of the world. I crave relationships with other people. I want to go do things. I want to feel the same emotions and have the same experiences. And then my brief glimpse into the "real" world disappears. I keep following my memorized scripts of what to say and when to say it, and people never notice anything different. I keep my mouth shut when all I want to do is talk about my "projects". I have found ways to talk about myself and my interests in "appropriate" ways. I can read peoples body language and their tones of voice and their energy and I've learned to call them by names of "angry" or "happy" or "sad". I know the right things and wrong things to say and do when people are "angry" or "happy" or "sad". And I keep going along in my little bubble, struggling to stay just enough in the "real" world, because if I do, then people treat me like any other person. And when I am treated like I am "normal", then I have a chance to go after my dreams and be respected and valued as an equal. I'm not "disabled" and "stupid" and "inferior". I'm not treated like a second class citizen or pitied, or excluded.

Sometimes I stop trying. I enter into my bubble. I loose myself. I loose track of time. Its just me and my projects and my feelings and I don't have to try and put words on them. I can just watch. When I want something, I get it. When I need something, I get it. Fuck the world and the consequences. But then I forget how to feed myself and take care of myself. I start getting "sick" and I sometimes forget how to talk. I can't walk straight. I can't remember how to cook a pot of rice. Night and day blend into each other. There is no self control. There is no world outside of my experience. I'm impulsive. Driven. Focused. Lost. Sometimes I break things or I can stop hurting myself. Its not that I want to do it. It just happens. I'm just waiting. Waiting for something to magically make me feel better. Waiting. Waiting. Trapped in my own body.

And then something snaps. I'm better. I spend a few days trying to figure out what happened and pick back up where I left off in the world. Most people don't miss me, cuz I dont really have anyone anymore that close to me. I'm too difficult. But I still have my dreams and hopes. And I'm grateful I have another day to try life again. Cuz maybe today will be a "good" day. I will be happy.

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