Finding a Voice (7 page)

T
hree days a week Chris and I went to Art together. We were on our own in a completely different culture when we left the safety of the SE wing.

It was tricky to push Chris’s chair through the hallways and to manoeuvre through doorways that seemed too narrow for his big chair. I was afraid that I might tip the chair over and then what would I do?

Plus, I felt that people were staring at us, or trying hard not to look at us. While I had never felt like I fit in, at least the sight of me didn’t scare kids off like Chris in his big blue contraption did. I wondered if he noticed how almost everyone avoided coming too near him. Or was he used to it because he had never known any different? I wished I could ask him how he felt.

I was learning a lot about Chris in art. He was so different as soon as I wheeled him into the art room. He didn’t smile, keeping his eyes on the paints that I put on the high table. He didn’t look at me at all either. His whole focus was on the task at hand.

His limbs became less stiff when I put a paintbrush in
his hand. I tried to release any of my own thoughts when I supported him to paint. It was freeing, because all of me disappeared and I was just facilitating his creativity, at least I thought I might be. It was still me that led his hand to the red or the blue. But I was learning that in subtle ways he did make his own decisions. If I paid attention to the tension in his arm I would know what colour he might be choosing. Go toward the green, resistance. Go toward the yellow, his arm moved easily that way. But it was guessing, and I found that as soon as I started questioning myself I was less certain that Chris was telling me anything.

We worked in the corner of the art room, where there was a table that could be adjusted to fit over Chris’s wheelchair. Everyone else sat at two long tables. Mr Jenkins had said that this was an ‘integrated’ class for Chris, and with me assisting him it might mean that kids would interact more with him than if Florence was with him. It didn’t seem like I was going to make any difference though.

The kids in this class were in the grade above me and even though I’d gone to elementary school with many of them, not one of them had ever said hello to me this year. And they didn’t now. In fact they didn’t even look at me or Chris. It was as if we were invisible. And yet I just knew by the way they whispered to each other that we definitely weren’t. I glanced at Chris to see if he felt as out of place as I did, but if he did he didn’t show it.

At least the rest of the class was painting too, but that’s where the similarities ended. Everyone else was working on copying a print of a famous artist of their choosing. Chris didn’t have a print to copy.

The teacher didn’t come around to him either. The week before he had pointed out Chris’s cupboard. No one else had a cupboard.

‘This is where Chris’s art materials are kept. You can ask me for more if you run out.’ This had been directed at me, with no interaction with him. While Florence might be too babying with him, I thought it was probably better than ignoring him completely. I didn’t see how this was teaching, or how I was going to get credit for what I was doing.

I talked quietly to Chris; imaging that he had a plan for his painting.

‘Ok. Blue is good. It looks quite calming so far. Should we go with a bit of complimentary colour?’ I guided his hand toward the green paint on the pallet, but felt his arm stiffen, before a spasm gripped it, resulting in a wide strip of blue paint down my cheek. If I had been in the SE, I probably would have laughed, but two boys at the nearest table chuckled instead. I wiped the paint away, without looking at them and without even smiling. It wasn’t funny anymore.

‘Okay. You show me then. Which colour?’ I moved his arm slowly, feeling for where he might want it to stop. Orange. He gripped the paint brush tightly and moved his arm himself
to deliver a thick circle of paint to the corner of his paper. This was another difference. All of the other kids were painting on canvas. Not Chris. He got primary school paper.

I supposed the two paintings I had helped him to paint didn’t look like much. They certainly could be primary school paintings. Still, they didn’t seem to just be random swipes of paint. Each was quite different from the other. Different colours, different brush strokes. And I had learned straight away that Chris was not happy to have a paper taken before it was fully covered in paint.

During our first class I had taken away the paper after it was covered with a few strokes, thinking that it was getting a bit messy, and I could just keep giving him new papers to do a few brush strokes on. He had flailed wildly and I had not been able to guide his hand to any paint. After a few minutes of attempting, I had taken the brush from him, thinking he was tired of painting. He had then swept the second paper off the table with his better arm.

The first painting was just out of his reach on the table, but while I had washed out brushes at the sink, Chris had jerked and rocked toward it until he could trap a corner of the paper under his hand. When I returned, he was sitting as still as he could, the corner firmly under his knuckles. I had sat down, unsure of how to fill the rest of the time if he didn’t seem to want to paint.

‘What now?’ I had asked quietly. Chris had frowned at me
and then down at the paper. And then he had done it again. And again.

When I had moved the painting in front of him his eyes stayed firmly on the paper. So I’d brought back the paints. He’d given me a triumphant smile and sure enough had continued to paint. This time I had let him tell me when he was finished.

Mr Jenkins and I were falling into a rhythm for science.

‘Ok. So, parts of the eye. Here’s the diagram.’ He placed a labelled picture in front of me. ‘You’ll need to be able to label all of the parts for the test.’

‘Right. Got it.’ I wrote
Parts of the eye
under my
for the next test
heading.

‘Next. Assignment of the day. Page
38
. Five questions there about what the parts of the eye do. That’s your work for the day. Page
30
to
37
will give you the answers.’

‘Ok. Got it.’

‘Now, do you have a particular interest in how the eye works? Burning questions? If you do, now’s the time. Let’s talk science.’

‘Not really. Don’t think optometry is for me.’ I could pretty much say anything in this class.

‘Okay then. You work away and meet me in the resource room when you’re done.’

I’d quickly finish up my work and then spend the rest of the class helping Mr Jenkins with whatever was needed. Sometimes it was folding laundry, sometimes it was reading with one of the kids. Every day was different in the Special Education wing. And I loved it.

The next two weeks seemed to fly by. There was something to look forward to at school every day. Even on the one day a week with no art or science, I had lunch with Chris. So between school and hiding out at my cabin as much as I could get away with, life with Grandma was even falling into a tolerable rhythm.

‘It was a pretty nice day, wasn’t it, Grandma?’

‘A fine day. I put the washing out on the line and it was dry in less than two hours.’

After the awful day at the hospital, things began to improve with Mom as well. She was on a new drug, and by the next visit she actually seemed almost normal. She was even allowed to go out and we had walked down to the park and fed the ducks the cupcakes Mom bought on the way.

‘Every duck needs a real treat once in a while,’ she had rationalised. Ok, so she was never going to be completely normal, but feeding cupcakes to ducks on a sunny afternoon was a huge step up from ranting to herself.

Now we were talking on the phone every evening. And
most nights Mom showed at least a slight interest in me before she went off on a tangent about herself.

‘So, tell me what you read today, Jo.’

‘Well, I looked on your shelf and found
Watership Down
and I used to love that book when you read it to me, so I thought I’d read it myself.’

‘Excellent choice, my sentimental penguin, you.’

I smiled. It felt good to hear a new pet name. It was a good sign.

‘I’m writing you a list of “Must Reads” before you turn sixteen. It’s a watershed age and some books you’ve got to read before you’re too cynical to stop appreciating them. I’m thinking that I might look into teaching a community course on children’s literature. There is such a dearth of knowledge as to the true children’s classics.’

My typical self-centred mother. This time, when she came home though, I was going to do everything I could to help her keep happy, if it meant having these sorts of conversations every minute we were together.

C
hris was driving me crazy. I had gotten used to his sudden jerks and random flailing limbs, and most of the time I could dodge his arms and legs when I was helping him with lunch or art. In the last week though, it seemed to be so much worse. I was going home with bruised shins from the kicks.

‘Ok. One more spoonful and we’re done here.’ He booted me again as I raised the spoon to hopefully be done with his dinner. ‘Ouch, Chris! That hurt!’

I was trying to be patient. Mr Jenkins had said that Chris didn’t have control of these movements, so it wasn’t that he meant to kick me. But something was wrong.

I had come to see that I could influence Chris’s spasms. If I was very calm, or if I talked in a steady voice to him, or if we were in a quiet space Chris became stiller. Art worked for him too. When his eyes were on what he was painting, he seemed to have so much more control over his arms and hands.

It was usually when he seemed excited, or if there was a lot going on around him, that Chris lost control and I knew
I would have to dodge his limbs.

This week, though, even when we were in our quiet lunch room and even when Chris seemed to be as in control as possible, these random kicks came out of nowhere.

It was beginning to grate on my nerves, especially on days when I came to school already tense from trying to keep my temper with Grandma. This was supposed to be my sanctuary.

I tried again to get the last spoonful of food into Chris’s mouth and yet again his right foot collided with my shin. I cursed my bad reflexes,
knowing
that kick had been coming. Knowing the kick had been coming … There was a pattern!

Then I thought back to my first day of painting with Chris, and the way he had used his body to get across the message that
he
would tell
me
when he was done with a painting. He was communicating! These weren’t random kicks; they were a message to me. I was sure of it.

‘Chris, you don’t like this, do you?’

Chris gave me the biggest grin.

His food never looked very appealing. Florence had explained that Chris’s swallowing reflex was pretty poor, so he could only eat foods that were nearly mush. Still, usually the mush was a slightly different colour each day and I could often tell by the smell what it had been before being made into mush.

I looked down at the last spoonful from this bowl. I hadn’t
noticed until now that it had been the same food all week. It was Thursday now. It had
definitely
been in the last week that the kicking had started.

For once, I wanted to see Grandma as soon as I got home.

‘Please, please can you make shepherd’s pie for dinner?’

‘I haven’t any lamb, Jo,’ she said.

‘It can be with mince beef,’ I begged, uncharacteristically throwing my arms around her thick middle. ‘A big pan of it. We need leftovers. I promised a friend at school a taste of your famous shepherd’s pie. He’s never had a proper one.’

Grandma remained stiff, and her expression never changed, but she sighed in acquiescence.

‘Don’t take off your shoes then. Get yourself in the car.’ I thought I saw a hint of a smile. ‘Since you’ve promised the original, I’ll have to get the lamb. No point in using the wrong ingredients.’

I couldn’t wait until lunch the next day. I had packed a big container of Grandma’s best shepherd’s pie, enough for me and Chris. Grandma had gone all out and also made soda bread with real buttermilk as well, and I had kept quiet about the fact that Chris probably wouldn’t be able to eat that.

I had thought about lunch hours with Chris. There were days when it was easier to feed him. Sure, there were always those involuntary missiles of arms and legs to be avoided. But
some days he seemed to fight to keep them under control and to get his head into a position that made it easier to get the spoon to his mouth.

Why were some days easier than others? I thought it must have to do with what he was eating. How much choice in what he ate, or anything, did he have? Of course, everyone in the SE did their best to make Chris smile, but had anyone ever directly asked him anything? And what about at home? I didn’t even know anything about his home. I had been so busy talking about my own life; I hadn’t thought to find out anything about Chris’s.

I asked to use the microwave to heat up the meal. I hoped that I had guessed right about what he would most want to eat. Hopefully my memory was right in leading me to think that mashed potatoes and mashed up meat seemed to be a favourite. Shepherd’s pie was the one thing I could think of that would have the right consistency not to choke Chris, without having to put it in a blender to turn to unappealing goo.

‘Ok, Chris,’ I said as I walked in, putting the plate of food in front of him. I had also snuck out one of Mom’s pottery plates, the brightest one of the mismatched pile. If Chris was going to have nice food, I wanted it to be on a proper plate. ‘I’m listening. Or at least, I’m trying to listen.’

I looked at him and smiled. He grinned back at me. His arms and legs thrashed, but I just waited patiently until they
settled down again.

‘This is my grandma’s famous dish. I don’t know anyone who doesn’t like it. But let me know if you don’t. I’m listening,’ I reiterated.

Chris did seem to like it, or at least I wasn’t receiving the thumping I had endured all week.

Florence had also delivered Chris’s lunch in his usual preschool-style bowl. It was the same meal that he had had all week. I suddenly thought to see what he would do if I switched to this meal.

‘Trust me! Tell me if I’m right in hearing that you don’t like this mush,’ I said as I raised a spoonful to his mouth. Sure enough, his right leg darted out and I moved back just in time to avoid another bruise.

My stomach fluttered in excitement. Chris was talking to me! He really was! This kick meant something. He was saying
NO
in the one way he could.

I was quiet as we finished the lunch. Chris’s body was quiet too. I didn’t know what he was thinking about, but my mind was whirling with questions to ask him – questions that I was pretty sure he could answer no to.

Last period of the day on Fridays was my new science block. I was doing my work as fast as I could, bursting to tell Mr Jenkins of my breakthrough with Chris and to ask him the
questions that I had been starting to wonder about.

‘Slow it down, Jo!’ Mr Jenkins said, as he swept back into the room after stepping out to help one of the aides who had requested help with a transfer. One of the wheelchair users needed to lie down after a seizure. I now knew that the big machine with bits hanging off it that I had seen on the first day in the SE was called a hoist, and it was used to move kids from wheelchairs to other chairs or to the floor.

‘
You
can talk. You’re always rushing about yourself,’ I found myself secure enough to retort in jest.

‘Guilty,’ he said holding up his hands and straddling the chair opposite my table. ‘Really, though, what’s the rush today?’

I told him all about my week with Chris and how I was certain he was trying very deliberately to communicate with me. Mr Jenkins listened as I spoke, nodding his head and not interrupting me. When I was finished, he just sat quietly a moment, looking down. When he looked up I was sure that I wasn’t going to like what he had to say next.

‘Listen, Jo. I don’t want to dash your enthusiasm, I really don’t,’ he said. ‘I totally agree that Chris is letting you know when he doesn’t like his food. You know as well as I do by now that he obviously has likes and dislikes.’

‘But?’

‘But I don’t want you to be disappointed if he isn’t able to understand words you say to him.’

‘Have you ever actually asked him anything?’ I was annoyed that Mr Jenkins, who I thought would understand how important this was, didn’t seem to get it at all. ‘I’m not expecting that we’ll be discussing Shakespeare or anything! I just think that Chris has
something
to say.’

‘And he does say it, in his own way, all of the time.’

I no longer wanted to ask Mr Jenkins any of the questions I had come to class hoping to get answered. I’d ask Chris himself. Somehow I would find a way to ask him the questions nobody else was bothering to ask.