Monthly Archives: March 2012

Non-Verbal Autism and iPads

The iPad is really intriguing. Technology is helping me find a place in the world. I have been liberated by my letter board which first gave me a voice. Though I have never been moved or touched when I use it, because someone else holds the letter board up, some people call it facilitation. This bugs me because it is so obvious I communicate myself that it takes bias to cast doubt. But that is the reality of being a non-verbal communicator.
 The old keyboard I had was tough to use. The voice was robotic and the screen small. In more than a year I still resisted it because it was cumbersome. My iPad is working out better. No one holds it. It is propped on a table. No one touches my arm, as always, and the voice is more human. The transition is hard, but I’ll do it.

Getting Self Control

This morning my aide for school called to say she was sick. My wonderful dad had to turn around on his way to work and stay with me in the morning. Then my wonderful mom did the same after her meeting so he could go to work. And I had to miss school because there was no sub to be with me. I started thinking about it because I missed being at school, for once. In the past, I, once in a blue moon, had to miss school because my aide was sick and there was no sub. In middle school I didn’t feel too down about that because, like most kids, I liked being home. In elementary school it made little difference in my remedial education whether I went or not, but now I feel happy in school. If I miss it I feel bummed, so I got the insight that I better get more independent so I won’t be in this situation again.
If I could monitor myself better I could have gone today. Autism makes us distracted by impulses, so without my aide I would stim on the way to class, take too long to sit, and be noisy. I need to be a harder worker on my self control if I want to grow into a man, not stay a boy   depending on his mom for guidance all my life. The brain can triumph over many obstacles. I have read a bunch of neurology books about people with brain disorders who healed themselves somehow.
The brain is not a simple organ like the heart or liver because it has the ability to compensate or adapt to injury at times. Who can say what we can overcome or not? It seems to me I must find the way to get more self-control by resisting impulses. That is harder than I can imagine, but I guess I need to start sometime. As with anyone who fights their impulses, it gets easier with practice. But really I need to be determined to do it and I’ll be honest, my determination is not consistent. The knowledge of what I must do is the start, but the fortitude to do it is the finish.

My New School

My high school is a really nice place. The change between my current school and my old school is huge. Last semester I felt miserable. I knew the school did not want me there. They never lifted a finger to be kind or help me feel easy or relaxed. It was so stressful it is hard to describe.  I won’t go into details, but the administration was really making my life intolerable when all I wanted to do was access a normal education.
The fact is being disabled is hard enough without being rejected or made to feel awful about a disability you can’t get rid of. So the difference between that kind of environment and my current school is striking. The administration is kind and happy to have me there. The teachers really are respectful of me and nice to my aide. My stomach is not nauseous when I go to school now. I feel at home, so now I can just learn like everyone else.
My realization is that the attitude of the administration is incredibly important to a school’s culture. For some reason, my old school has a better reputation and is thought of as a better school out in the community. I know I’m in Honors classes so I am around the most motivated students, but my observation is that it isn’t better in instruction, friendliness, or student behavior. It is better at hassling disabled students though, and does have a reputation for that. The new school is like a hidden school because everyone wants to get their kids in the other one and I think this one is much better. Irony, for sure.

Letter to a Friend with Autism

Dear D.,

 I see that the trap of the sensory system gone awry in autism is making you sad. It is so totally understandable. When I was twelve I also felt the same way you do. In sixth grade I was really sad every day. I saw I was not easily getting better. I saw I was not having much improvement in my speech, or my hand control, or my mind body dialogue in spite of years of toil. I looked around in middle school and I saw that being different was the worst sin of all to our peers.

 Like it or not, our destiny is to be different. Now I have even embraced it in some ways because I saw that hating autism made me depressed. Accepting that I could make a meaningful life for myself with autism changed everything. Inside I still wish I could be more neuro-typical in behavior. I’d talk in an instant if I could figure out how, but I feel blessed that I can communicate even if I can’t speak.

You can communicate more too if you really take it in stride. I mean it is hard to allow yourself to communicate with others after years of stimming inside. In the journey to communication you must embrace the world outside of your obsessions. I see your sensory toys. It’s an incredible escape; still I see your mom wants to know you inside. Your thoughts matter to her. She misses hearing them because deep down inside you guard them so tightly. It is liberating to let go, to communicate, and to join in the world, in the regular ways of school or family. Don’t give in to sorrow because we can be free inside in spite of the hard challenges autism gives.

Your friend, Ido

Autism and the Gumball Theory of Communication

This essay is interesting because it tries to explain what it is like to not have the ability to get your thoughts out at will. The assumption is nearly always that having a hard time expressing your thoughts means that your thoughts are jumbled. It is a silly theory, in my opinion. All you need to do is see how a person travelling in a foreign country seems to lose their ability to make jokes or express complex ideas in another language if they are not completely fluent, but it is clear they express ideas, joke, and think OK in their own language. Autism is different, of course, because the language in which I struggle to express my thoughts verbally is my native language. But that doesn’t mean I’m not thinking my thoughts clearly. Like the author says, my output really isn’t mine to control. What is your opinion about this article?

The Roulette Wheel of Life

My dogs lucked out. All of them were rescue dogs and had a hard start in life. One is a shelter foundling, another came from a rescue organization, and our most recent find was a severely neglected, matted, starved, wormy mess my dad’s cousin found in a busy street. Two came to us by chance and only one did we pick, yet here they are. I thought about this because life had a happy resolution for them. They could have died, all three, in a shelter, or in traffic, yet instead they scamper in the yard, hike, and live happy lives. They had luck in the dog lottery of life.

In life we have luck that we can’t control. I mean, I’ve got lots of power to make my life better or worse, but not to stop my autism no matter how hard I try. That is the luck part. On the roulette wheel I got Number Autism and missed all the numbers for the normal brains. Though my chance of getting autism was low, the luck factor landed me there anyway. The roulette game is totally random. It didn’t target me personally. I just had a bad deal. I suppose life has lotteries all the time. I watched a documentary about a girl in India born with a cleft lip whose destitute family didn’t even know that it could be repaired by a relatively simple surgical procedure. She would have looked like that her entire life and would have been shunned, and kept from school, and later from marriage. But the roulette wheel spun for her again and a program in India (the Smile Train) found her in her village and provided her a free surgery, and now she is completely fine and beautiful. The roulette wheel did her one more favor. Of all the kids in India, and the world, with unrepaired cleft lips or palates, she was the one a documentary filmmaker made a film about, which got an academy award that year, and has transformed her life completely. So, luck is a thing I don’t understand, for bad or good. I assume I never will and that no one can, but I hope my roulette wheel will decide to give me some reprieve from autism one day.