by Kim Hood
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!’
A
t least Chris was developing a bit of a sense of humour about my crude attempts at helping him talk.
CHAPTER SEVENTEEN
I couldn’t believe that it was only a month until Christmas. For once, I wasn’t worrying about when everything would fall apart. Mom had been home since just before Halloween, without any major crises. And for the first time ever, I was not counting the days down to the school holidays. I was too busy trying to make Chris’s home-made communication system work as best as I could, while finding out about computer programs and devices for people with physical disabilities. I had found a few things on the internet, hurrying into the library before school to do a quick search, but mostly searching for anything about nonverbal communication – that’s what it was called – brought me back to the hated picture symbols.
Mr Jenkins’s tiny office off the resource room was a gold-mine of information though. As the head of the special education department, all of the flyers and catalogues and sales information were addressed to him. Most of the time he was not even in his office and the door was open so that he could fly in, grab whatever thing was needed from the growing pile on his desk, and fly out again.
I first discovered the gems of information dispersed throughout this pile of papers when Mr Jenkins sent me to fetch the marking book he had forgotten for science. I had to gently move quite a few papers and books before I found the purple-covered marking book where he kept track of assignment and test scores. While I was moving things, a glossy catalogue caught my attention because the boy on the cover was in a wheelchair very similar to the one Chris used. I tucked it under my arm along with the found marking book.
‘Can I look at this?’ I casually asked Mr Jenkins.
‘Hundreds where that came from. You are welcome to keep them all,’ he said. ‘I’m drowning in advertisements, and truthfully, I don’t want to look at things I only wish our budget would stretch to.’
I half listened, scanning the computer aid and device section. Bingo! There were three pages dedicated to different ways to control a mouse or to type on a computer without your hands. I couldn’t believe my luck!
This is why I hadn’t been able to find anything on the internet! I had been looking for some kind of fantastical system, when all I needed to look for was a simple way for Chris to use what everyone else used for communication – a computer.
My heart sank when I noticed the prices of the eye tracking and head tracking devices. There was nothing for under $1,000. And I remembered Mr Jenkins talking about all of the money that had gone into technology for Chris that he had refused to use. This coupled with what Mr Jenkins had just said about the budget. It wasn’t sounding hopeful that Chris’s communication needs would be met through school.
So Chris and I trudged along using our ‘phone texting’ model, tweaking it as we practised. We were now using it more like the phone set up, with Chris tapping between one and eight times to choose a group of letters, and then between one and four taps to choose a letter. It still was cumbersome. It was hard for him to be precise with his taps, and so sometimes I guessed wrong on the group of letters. Plus, the yes/no system still worked best for a lot of things, and I got confused as to whether Chris was indicating yes or no, or choosing a letter to spell something.
And then, he wasn’t very good at spelling either. He may have learned the basics of reading and writing by observing all through primary school, but without any practice, he was pretty rusty. After a few days of using the new text system, I had carefully written out each letter Chris chose, ending up with ‘Creeps’. I had spent ten minutes trying to ask the right yes/no question to find out who he was talking about. Finally he just stopped answering me.
It was only at home that night, as I started to prepare dinner for Mom and I that I realised what Chris had meant – crêpes. My savoury crêpes were one of his favourites, and he was requesting them for the next day.
And some days, Chris just didn’t want to talk, and then he wouldn’t. Nothing could budge him.
But mostly, he just got tired quickly. It seemed difficult for him to concentrate for very long. After nearly a month of practising, he still only spelled out single words or very short phrases for me. Yet, I knew from the pace at which he powered through novels, that his understanding was way beyond short phrases.
It was a beginning though, and whenever I could, I mined Mr Jenkins’s office for new catalogues, hoping to find some devise with a price tag reasonable enough for me to suggest it to Mr Jenkins.
I had laid out the letter cards one day, when Mr Jenkins opened the door just enough to pop his head in, obviously on his way to somewhere else. I tried to sweep the cards under my binder, without drawing any attention to them.
‘Hi, Mr Jenkins. I’ll bring Chris’s dishes and stuff to the kitchen at the end of lunch,’ I blurted, trying to keep eye contact with him so he wouldn’t focus on the table.
‘Right?’ he said suspiciously. ‘You’ve pretty much done that since you started, but thanks for the info.’
I froze as his gaze travelled down to the table.
‘Looks like I’m interrupting some sort of game here, so I won’t keep you now. I just wanted to say that Chris’s house staff finally got back to me, and you can go for a visit to his house any time this week. Just name the day.’
‘Tomorrow,’ I answered immediately.
‘Righty-oh.’ He went to leave and then poked his head back in. ‘Oh, and any time you want to let me in on the game, Jo, just let me know, okay?’
That night I arrived home with an idea to make sure Mom would be out of the house the whole next day, thinking about something else, before I broached the subject of doing something after school. It made my stomach do back flips just thinking about the last time I had dared not come straight home. I had even stopped going to my cabin since Mom had come home. I couldn’t leave her for too long. So on the bus I had gone over how I would say my idea, hoping that she would go for it. If not, I was not going to be able to visit Chris. I just couldn’t risk putting Mom over the edge again, no matter how good her mental health might seem.
I waited until dinner was done and Mom had her notepad and the last of her chosen eight children’s books, sprouting sticky-note feathers in every direction, in front of her. I sat down and took the pile of workshop plans she had finished – well, as finished as they were ever going to be. She kept going back to them and adding ideas for projects and plays and songs. As the rate she was going each workshop was going to end up being a year-long course.
‘Mom, I think these are great.’ I did mean it. The ideas she had thought up would make any kid interested in books. ‘Don’t you think it’s time to see where you could advertise the workshops? We could make a list of all the places that could be interested.’
‘Oh, I don’t know, Jo,’ Mom answered, her head almost touching her current book of interest as she carefully turned pages, pink highlighter in hand. ‘Do you think there’s enough here yet to compete with computers and video games?’
‘I do. And I’d say community centres and libraries will be putting together their calendars for January now.’
I had no idea if this was true. I hoped it was, or at least that people at enough of them would talk to Mom long enough to keep her out of the house all afternoon.
‘Yeah?’
I had made enough of a point to entice her to look up from her book.
‘What about making a list tonight and going around to places tomorrow? You only have to show them a sample idea, a workshop you’re most happy with.’
‘I suppose it couldn’t hurt.’
‘How about I meet you down town at six for a celebration dinner out? Grandma gave me a little money for a rainy day. We can use it for a sunny day instead!’
I hadn’t even had to mention my visit to Chris.
CHAPTER EIGHTEEN
I was waiting outside the school for Chris when the white van pulled up. A shortish, stoutish woman, who looked about fifty, got out, opened the b
ack doors and used a control to lower a metal ramp. I assumed this must be Chris’s way home.
Flo wheeled a grinning Chris out, handing the woman his backpack.
‘A good day,’ Florence said. ‘We need some more protective gloves when you get a chance; we’re almost out.’
‘Okay. I’ll let Mary know,’ the woman replied. ‘No seizure yet, huh?’
‘Nope. It’s been a couple of weeks hasn’t it? We’re in for a big one I’d say.’
Neither woman seemed to notice that I was there, or that they seemed to be talking about Chris even though he was right there.
But Florence had noticed me standing a few paces away because she gestured me over, and introduced me to the van driver.
‘Cynthia, this is Jo, our newest unpaid member of staff, wanting to see what goes on in the residential side of things.’
That wasn’t what I was wanting at all. I just wanted to know more about Chris. It wasn’t like I was doing this for some sort of work experience.
‘Hi, Jo,’ the woman said, holding out her hand to shake mine. ‘You’re most welcome. We’ve been hearing that Chris has quite taken to you.’
‘We get on okay,’ I said, looking over at Chris, who didn’t seem to be paying attention to anything we were saying.
It felt weird to be talking with Florence and Cynthia, as if Chris were not even there. It was like talking behind someone’s back, only the person was right in front of you and you just couldn’t see them. It was as if they just couldn’t see Chris.
Cynthia didn’t talk much in the van. Instead, she turned up the radio, tuned into classic rock, and sang along to the songs she knew. I was glad for that.
We stopped one more time, to pick up a younger girl from an elementary school. She was in a wheelchair as well. Hers was pink and tiny. She was tiny too. I thought she couldn’t be more than six or seven, with delicate little features and skin so pale it seemed almost translucent.