‘So many great characters. What do you think about getting some kiddies designing costumes of their favourite character?’
‘Sounds great!’
It was good to hear her so excited about something kind of productive – and at 9.30 in the morning instead of 2a.m.
CHAPTER FIFTEEN
I was looking for an upgrade to Chris’s language. We no longer needed the red and green dots, as we both had it down – left yes, right no, but it just wasn’t good enough. And it left me almost completely in the lead as far as initiating conversation.
I’d tried to look things up on the library computers before school started, but I couldn’t find anything in the fifteen minutes at a time that I had. Sometimes I wished Mom wasn’t so dead set against having a computer. It wasn’t just that it was another thing that made me weird, not having one, but also it was so much harder for me to find things out. She preferred more old-fashioned ways of getting information.
It was Saturday and Mom and I were browsing the bookshelves of the maze-like second hand bookshop downtown. Despite the technology gap in my life, this was something I truly did like doing with Mom – spending hours looking through old books. It was a nostalgic feeling. We had been coming here for years; it was quite likely this had been my first outing as a baby. I loved the smell when I opened a very old book, and I loved going along just reading the titles onthe spines, guessing at what the story might be about. We could spend hours here. It’s a good thing I liked books; I’d say Mom would have disowned me if I didn’t.
I was on a mission today though. While Mom scoured the shelves for children’s books, I was in the nonfiction section, looking for books that might teach me a different way to talk with Chris.
I started with language, thinking maybe there was some kind of sign language we could use. Lots of foreign language dictionaries. I supposed it was a foreign language Chris and I had to formulate, but speaking in French or Spanish was still going to be speaking. Finally, I found some books on typical sign language interspersed in the language section, but this was not going to be helpful either. Chris just didn’t have enough control of his limbs to sign anything.
So I scanned the shelves until I got to a tiny label – Disability. There were only a handful of books here.
Down Syndrome Explained. Child Development. Special Education Handbook
. I scanned through this one, but it was all to do with challenging behaviour – whatever that was.
I picked up a bulky binder, not a book at all, labelled PECS. At first I was just confused. There were only a few pages of instructions at the front and the rest of the binder was filled with pages of squares showing stick-like pictures of things. I turned to the front page again. Pictorial Exchange Communication System.
On Monday, I pulled out the little stick pictures I had painstakingly redrawn and cut into squares at the weekend. There were twelve of them to represent twelve words: painting, eating, drinking, finished, happy, sad, and then six colours.
The idea was that you put some of these little squares on a board or in a book and then if someone couldn’t speak, they could point to pictures to let people know what they wanted or needed. I wasn’t sure how this system would be any better for Chris. It would be difficult for him to point at a picture, even with his good arm. I could maybe put out two pictures and he could choose one of them – left or right, but what if I didn’t have out the picture he wanted? I was a bit stuck as to what to do next, so I thought we might as well try it.
I wasn’t prepared for how Chris would react.
As soon as I took out the pictures, he started to thrash his head forcefully to one side. It was so sudden and so intense I was sure it must be one of the seizures that Mr Jenkins had told me about. He had said that Chris would thrash about even more than usual.
But he had also
‘Sounds great!’
It was good to hear her so excited about something kind of productive – and at 9.30 in the morning instead of 2a.m.
CHAPTER FIFTEEN
I was looking for an upgrade to Chris’s language. We no longer needed the red and green dots, as we both had it down – left yes, right no, but it just wasn’t good enough. And it left me almost completely in the lead as far as initiating conversation.
I’d tried to look things up on the library computers before school started, but I couldn’t find anything in the fifteen minutes at a time that I had. Sometimes I wished Mom wasn’t so dead set against having a computer. It wasn’t just that it was another thing that made me weird, not having one, but also it was so much harder for me to find things out. She preferred more old-fashioned ways of getting information.
It was Saturday and Mom and I were browsing the bookshelves of the maze-like second hand bookshop downtown. Despite the technology gap in my life, this was something I truly did like doing with Mom – spending hours looking through old books. It was a nostalgic feeling. We had been coming here for years; it was quite likely this had been my first outing as a baby. I loved the smell when I opened a very old book, and I loved going along just reading the titles onthe spines, guessing at what the story might be about. We could spend hours here. It’s a good thing I liked books; I’d say Mom would have disowned me if I didn’t.
I was on a mission today though. While Mom scoured the shelves for children’s books, I was in the nonfiction section, looking for books that might teach me a different way to talk with Chris.
I started with language, thinking maybe there was some kind of sign language we could use. Lots of foreign language dictionaries. I supposed it was a foreign language Chris and I had to formulate, but speaking in French or Spanish was still going to be speaking. Finally, I found some books on typical sign language interspersed in the language section, but this was not going to be helpful either. Chris just didn’t have enough control of his limbs to sign anything.
So I scanned the shelves until I got to a tiny label – Disability. There were only a handful of books here.
Down Syndrome Explained. Child Development. Special Education Handbook
. I scanned through this one, but it was all to do with challenging behaviour – whatever that was.
I picked up a bulky binder, not a book at all, labelled PECS. At first I was just confused. There were only a few pages of instructions at the front and the rest of the binder was filled with pages of squares showing stick-like pictures of things. I turned to the front page again. Pictorial Exchange Communication System.
On Monday, I pulled out the little stick pictures I had painstakingly redrawn and cut into squares at the weekend. There were twelve of them to represent twelve words: painting, eating, drinking, finished, happy, sad, and then six colours.
The idea was that you put some of these little squares on a board or in a book and then if someone couldn’t speak, they could point to pictures to let people know what they wanted or needed. I wasn’t sure how this system would be any better for Chris. It would be difficult for him to point at a picture, even with his good arm. I could maybe put out two pictures and he could choose one of them – left or right, but what if I didn’t have out the picture he wanted? I was a bit stuck as to what to do next, so I thought we might as well try it.
I wasn’t prepared for how Chris would react.
As soon as I took out the pictures, he started to thrash his head forcefully to one side. It was so sudden and so intense I was sure it must be one of the seizures that Mr Jenkins had told me about. He had said that Chris would thrash about even more than usual.
But he had also
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