To understand autism, don't look away

Enjoy it since being fucked is unavoidable
中大放羊哥
周三, 06/07/2017 - 23:00
"Look at me!"That phrase turned me into an eye-contact coach. I'm the mother of Ivan; he's 15 years old. Ivan has autism, he doesn't speak, and he communicates through an iPad, where his whole universe of words exists in images.He was diagnosed when he was two and a half. I still remember that day painfully. My husband and I felt really lost; we didn't know where to begin. There was no internet, you couldn't Google information, so we made those first steps out of sheer intuition.Ivan would not maintain eye contact, he had lost the words that he did know, and he didn't respond to his name or to anything we asked him, as if words were noise. The only way I could know what was going on with him, what he felt, was looking him in the eye. But that bridge was broken.How could I teach him about life? When I did things he liked, he would look at me, and we were connected. So I dedicated myself to working with him on those things, so we would have more and more eye-contact moments. We would spend hours and hours playing tag with his older sister, Alexia, and when we said: "I caught you!" he would look around for us, and at that moment, I could feel he was alive.We also hold a record for hours spent in a swimming pool. Ivan always had a passion for water. I remember when he was two and a half, on a rainy winter day, I was taking him to an indoor pool, because even on rainy days we'd go swimming. We were on the highway, and I took the wrong exit. He burst into tears and cried inconsolably, nonstop, until I turned back. Only then did he calm down.How was it possible that a two and a half year old didn't respond to his own name, yet in the middle of the rain and fog, where I couldn't see anything, he knew the exact route? That's when I realized that Ivan had an exceptional visual memory, and that that would be my way in.So I started taking pictures of everything, and teaching him what life was like, showing it to him, picture by picture. Even now, it's the way Ivan communicates what he wants, what he needs and also what he feels.But it wasn't just Ivan's eye contact that mattered. Everyone else's did, too. How could I make people see not only his autism, but see him the person and everything he can give; everything he can do; the things he likes and doesn't like, just like any one of us? But for that, I also had to give of myself. I had to have the strength to let him go, which was extremely difficult.Ivan was 11 years old, and he went for treatment in a neighborhood near our house. One afternoon, while I was waiting for him, I went into a greengrocer, a typical neighborhood store with a little bit of everything. While doing the shopping, I started talking to Jose, the owner. I told him about Ivan, that he had autism, and that I wanted him to learn to walk down the street by himself, without anyone holding his hand.So I decided to ask Jose if Thursdays around 2pm, Ivan could come and help him arrange the water bottles on the shelves, because he loved to organize things. And as a reward, he could buy some chocolate cookies, which were his favorite. He said "yes" right away. So that's how it went for a year: Ivan would go to Jose's greengrocer, help him arrange the shelves of water bottles with the labels perfectly lined up on the same side, and he would leave happy with his chocolate cookies.Jose is not an expert in autism. There is no need to be an expert nor do anything heroic to include someone. We just need to be there —(Applause)(Applause ends)Really, no heroic deed — we simply need to be close. And if we are afraid of something or we don't understand something, we need to ask.Let's be curious but never indifferent. Let's have the courage to look each other in the eye, because by looking, we can open a whole world to someone else.(Applause)(Cheers)
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