Finding a Voice (9 page)

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 on
the 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 said that Chris’s eyes would roll back and that he would probably drool excessively or even have some foam at the corners of his mouth. He wasn’t doing this. His arms and legs were moving a normal amount for when he was excited, but it was mostly his head that was moving rhythmically to one side.

To the right side. To the no side. I suddenly understood that Chris was telling me NO.

‘Chris, Chris!’ I tried to get him to pay attention to me and stop banging. ‘I’m listening; you’re saying no! But stop!’

He did stop.

‘Okay, just to be sure. Do you want to use these pictures?’

No.

‘Do you know these pictures?’

Yes.

‘Do you hate these pictures?’

Yes.

So that was the end of that. Maybe we were going to be stuck with ‘yes’ and ‘no’ as our only way to talk. I did wish I knew why Chris was so vehement about not using the pictures. What had happened to make him hate them so much?

M
om had run into her first problem since coming home from the hospital. It was a problem that should have been easy to solve, but of course nothing was ever that easy with my mom. Her newest obsession in her series of children’s book workshops was focused on
Little Women
. She was stuck on how she could get kids interested in it and wanted my help, but I had never read it.

‘If you think it won’t work, Mom, don’t include it. You said eight books, eight workshops. Just pick another book,’ I persuaded.

‘This is THE most important book of the lot! Your name came from it, Jo. Strong women protagonists in an age where it wasn’t expected. It’s SO important that the workshop must be perfect. There mustn’t be a child who leaves the day without loving this book,’ she insisted, gesturing widely for emphasis.

I was getting worried. Mom didn’t deal well with dilemmas that could not be solved quickly.

‘Okay. I’ll just have to read it and we’ll come up with something amazing when I’m done.’

‘You better be fast about it, Jo. You never know when I’ll lose the inspiration to finish this.’

It was a threat. If I couldn’t help her out of her dilemma, then our easy days together would be over. I read into the night, trying to finish it. It didn’t help that it was the longest book of the bunch.

I had finally succumbed to sleep, and so the next day the book was not finished. I knew that I had to finish it before the end of the day, or there was a good chance that it would be a very bad evening with Mom.

I spent the day hiding the novel behind text books, trying to read it as quickly as I could. I had even had to try to sneak in reading with Chris during lunch, apologising and reading some out loud to him in consolation.

Now it was the last period of the day and I was supporting Chris in art. I was frantic to finish the book, so that I could spend the time on the bus ride home thinking up some brilliant plan to get kids interested in it.

‘Sorry, Chris. I really am going to have to read this last chapter while I help you with painting,’ I apologised again, propping the book open with a block of wood I had found. I put it just behind his paper, so that I would be able to help him load his paintbrush and guide his arm as needed, while still sneaking in a quick sentence or two in between.

I held Chris’s arm over the paint palette, reading as I waited to feel the familiar pull or push of his arm, guiding me to
the colour he wished to use. I was nearly two paragraphs in when I realised that his arm was still.

I looked up. Chris’s eyes were on the book and his head was gently tapping, ‘Yes.’

‘The book?’

The yes got more emphatic.

‘Do you want me to read to you?’

No. Quick and clear.

I mulled this over. I was getting better at not trying to guess what Chris meant to say; and to just keep asking questions. I was learning that he almost never made a mistake in answering me, and that he often had very specific things to say, which entailed me asking just the right questions. Sometimes it took awhile.

‘Do you want to paint on the book?’

No, and a big grin.

I couldn’t think what to ask. I looked back over to him. His eyes were moving slowly left to right, left to right, focused on the book. I watched him, fascinated. After several more left to right scans, his eyes stopped moving and he communicated
yes
with his head.

Almost afraid to breathe, I brought the book right up to Chris and turned the page. Again his eyes scanned the page. He wasn’t interested in painting today. He wasn’t even interested in me today. Chris was reading.

I couldn’t believe it at first. How was it possible the teachers, who I supposed knew Chris pretty well, did not know that he could read? How was it possible that they thought he didn’t even understand most of what they said?

I went back to testing him.

‘Does this word say look?’ No. The word in front of Chris was jump.

He put up with this for a few words, correctly identifying all of them, and then he stopped answering me. He was not interested in impressing me. Obviously he was not interested in impressing anyone, or he would have found a way to do just that, years ago.

So I brought him books instead. We didn’t have much time during lunch if we waited until we were finished eating to start reading. So I held the book Chris had chosen up for him, while feeding him with the other hand. I ate my own lunch in bits as I walked down the hallways between classes.

Still, he would communicate
no
to me if I brought out the book before I told him about the previous evening with Mom.

‘Last night was good, Chris. She has finally moved on from
Little Women. Charlotte’s Web
is easy for her. Making webs with wool and writing words with sparkle glue. That sort of thing.’

‘And my mom talked to my grandma. I think they may even be almost liking each other. Mom actually laughed.’

‘Okay. That’s it really. Want to read now?’

And Chris would tap
yes
. I had brought several choices the first day. As he had such definite ideas on things as specific as paint colour I had expected that he would have certain tastes in books. He didn’t. He wanted to read everything.

But then, I suppose that made sense. He had probably never been able to read a complete book before. How many times had he only been able to read the few pages of a book that someone in his line of sight was reading?

How did you even learn how to read if everyone around you thought you weren’t able to even understand what was said to you, let alone have the capacity to read?

Mr Jenkins helped to answer that question.

During one science lesson, the picture symbols I had made fell out of my science text. I tried to hide them away, but Mr Jenkins had seen them.

‘I see you haven’t given up on Chris yet,’ he commented. ‘You should have asked. We have a computer program, where you can print out as many of those as you want. Quite a few of the kids use PECS in all sorts of different ways.’

‘You kind of said that Chris can’t understand anyway,’ I defended.

‘I didn’t say that, Jo,’ he said. ‘He tests low in intelligence all right, but how can someone respond to an IQ test with no words? Besides, it is very important that everyone has a way to communicate.’

‘Well, why hasn’t anyone taught him anything?’ I retorted, slamming down my text, angry again that Chris seemed so misunderstood.

‘There’s a lot you don’t know about Chris. He spent his whole primary school years in an integrated classroom. He was part of every reading lesson, every math lesson.’

‘And?’

‘He hasn’t been without opportunity, Jo. He had a teacher who lobbied very hard to get him an electronic picture exchange device that he could operate with a head switch. Lots of resources went into training people to use it. Everyone else used it. Chris would not. Or, to give him the benefit of the doubt, maybe he could not.’

I could believe that. If there was one thing I was learning about Chris, it was that he could be stubborn when he wanted to be. And he was not about to do anything just to please someone else. Not unless it was his idea.

I was trying something new with Chris. I had got the idea when my phone started beeping the night before, making me jump. I was always surprised when my phone beeped; it wasn’t like I had any friends to send me text messages. When I checked it, sure enough it was just my service provider letting me know of some new deal.

But it gave me a thought. Could we use the same idea that
the phone keyboard utilised, for Chris to ‘write’ messages?

So now I had eight cards in front of Chris, each with either three or four letters on them. Abc, def, ghi and jkl on one side, mno, pqrs, tuv and wxyz on the other, with a big black line between the two groups. Chris had his eyes down and had a decidedly negative expression on his face. I was not sure if this was because of the cards in front of him, or because I had put the book he was reading away.

‘You have to trust me, Chris,’ I lectured. ‘I’m trying to come up with a way you can
really
talk to me. Do you think I want to keep rattling on, with never a word from you?’

Chris raised his eyebrows, but didn’t smile.

‘Can you just try it?’

It took a few seconds, but finally he tentatively tapped to the left –
yes
.

‘Thanks, Chris. Okay, let’s start with your name.’ I wrote his name in black letters across a paper. ‘Is the first letter on this side?’ I asked, pointing to one side of the black line. I eliminated four cards and then separated the remaining four cards with the black line.

‘This side?’ With each answer, I eliminated half the cards. Then I had to go through each letter on the final card. And that was for the first letter of the word. I counted. Thirty questions in order to spell CHRIS. It was not the most efficient system. No text prediction.

‘It’s just a prototype. To see if letters work for you,’ I
appeased. He was being unusually patient with yet another of my tests. ‘Anything you want to say?’

He started to move his head to the right, and then gave two taps to the left –
yes
.

I carefully pointed to each group of cards until I was down to one and then asked about each letter on the remaining card, writing down the letter he indicated yes to, then bringing back all eight cards again to guess the next letter. D, O, N, E, N, O, W. It had taken nearly five minutes to communicate, ‘Done now.’

Chris smiled and I started to giggle.

‘Guess you won’t be rambling on for ages like me with this system,’ I conceded. ‘We’re going to have to find some twenty-first-century technology – and fast. Or it’ll take you until dinner time to let someone know what you want for breakfast!’

At least Chris was developing a bit of a sense of humour about my crude attempts at helping him talk.