Finding a Voice (11 page)

When everything was cleaned up, Alison wheeled Chris over to the television where Sam was.

‘I’ll be back,’ she said to Chris. ‘It’s time for Jamie to get out of his chair.’

The staff never seemed to stop, and yet the kids here
seemed to be perpetually just waiting to be handled. I sat with Chris and Sam for twenty minutes, watching the cartoon that was on, while Alison, Mary and Cynthia came in and out of rooms, wheeling Teresa away next, then bringing her back, then wheeling Lucy away again.

Finally Cynthia came to take Chris away again.

‘Chris is going to have a bath now,’ Cynthia informed me. Informed
me
, didn’t ask Chris if that was what he wanted to do. ‘Do you want to help with that?’

I must have looked horrorstruck. I
felt
horrorstruck. I couldn’t believe that she was actually asking me that. I was glad that Chris still seemed to be in a world of his own.

‘I think I have to go now,’ I managed to say.

I had seen enough. I had been sceptical about the prospects of anyone at school being able to get Chris the technology he needed to communicate, but I doubted that the staff here would have time to listen even if he had a way to talk. Here he was a body to be fed, toileted, bathed and medicated. How was being able to talk going to change that? I could suddenly understand why Chris had given up trying long ago.

A
ll I could talk about with Dr Sharon was Chris.

‘It’s terrible. I thought I lived in a prison, but Chris can’t even decide when or where to
move
in his home.’

‘You feel you live in a prison, Jo?’

‘No, I’m talking about Chris!’ Dr Sharon was annoying me again, trying to put words in my mouth, and not listening.

‘So things are fine now at home,’ she stated.

I felt my stomach lurch. I didn’t want to think about home. Things
were
fine weren’t they? Never mind that Mom had not spoken a word about her day of sales pitches to libraries and community centres. Maybe she was waiting for people to get back to her. Maybe she wanted to surprise me with her name printed in a calendar of upcoming classes:
Books Come Alive: A series of interactive workshops for children 5-12 where we will explore the classic stories of our time in exciting new ways. Suzanne MacNamara facilitating. Sue has a Masters Degree in English Literature and a lifelong love of books
. Maybe.

‘Mom was a bit quiet over the weekend. But she’s been working hard on her project, so I guess she needs a rest, right?’

Was I trying to convince myself? Mom had not gotten out of bed on Saturday until four. At twelve, after agonising over whether to wake her up or leave her sleeping, I had opted for letting her sleep. It meant she wasn’t taking her medication on time, but I was afraid that if I woke her up to a bad day, then the day would have to be spent coaxing her out of whatever mood she was in. That could be unpredictable.

There was hardly any food in the house and I had started to worry about what to do if she didn’t get up the next day either. In the end I thought it was safer to leave her sleeping, while I went for the groceries a day earlier than usual.

So I had gone to the supermarket, buying as much as I could carry in my backpack and two bags. The whole time I checked my watch and worried that Mom might be up and getting herself into a frantic mood that I might have been able to avert if I had been home. Then I worried that she might
not
be up yet, and it was getting later and later for her medication, and would that lead to more trouble that night?

The whole weekend had been like that. When Mom was awake, there were no big dramas, so that was good. It was only that she was
so
quiet, which had made me nervous, waiting for the storm after the calm.

In my heart I knew that something had not gone well Friday afternoon. We had met at the bookstore after I had left the group home, and we had gone off to Mom’s favourite little Italian restaurant for dinner. Nothing that day had
seemed terribly wrong – except that she had not mentioned a single word about her afternoon. But then, I had not asked her a single thing either. I had been too caught up in my own thoughts about Chris and where he lived.

I hadn’t been able to stop seeing the image of him being lifted onto the toilet, without even the dignity of a closed door. What point was there in Chris being able to say a damn thing in that house? And that made me doubt the people who were in his life at school. Didn’t Mr Jenkins keep telling me not to get my hopes up?

‘Something
has
to change for Chris.’ I emphatically changed the subject with Dr Sharon again. ‘I can’t stand to think of him living with no one understanding, no one even caring! Having to just survive until he gets to school!’

‘Is it Chris we are talking about, or you, Jo?’ She infuriated me! Why would she not listen to what I was saying?

‘It all could fall apart and you don’t even care!’

I jumped up and ran out. I couldn’t stay any longer. I felt I was going to explode if I did.

The house was quiet when I walked in.

‘Mom?’ I called out. ‘Are you home?’

There was no answer, but the light in the kitchen was on and Mom never left the lights on when she went out, so as to save fossil fuels. Funny how she could remember details
like that all of the time, yet not be bothered to remember things like paying bills. I had picked up the phone bill from the mailbox and opened it on my way in. It was an overdue notice. Mom hadn’t paid the bill, even though, when it had arrived two weeks ago she had assured me that she would pay it that very day. I had actually believed her.

I walked into the living room. The room was covered in torn up pieces of paper. Mom was sitting in the middle of the mess. Beside her was a red binder, yawning open and empty. I knew what it meant. That binder had been a familiar sight on our kitchen table over the last month. It used to hold all of Mom’s notes, ideas and planned activities for her series of workshops. Now everything covered the living room floor instead.

She looked up. I expected that she would be sad, but no, I should have known. She was smiling.

‘Well, that’s finished! On to other things.’

‘Why?’ I asked tersely. I couldn’t believe I had bothered being worried about her.

‘Oh, Jo. You are so naïve.’ She gave me that same smile. ‘No one cares about books anymore.’

‘So, no one was interested in the workshops?’ I snapped this too. I was not in the mood for this after the session with Dr Sharon. All of the hours spent patiently helping Mom come up with ideas, praising her, urging her on, lay in ruins on the floor.

‘I suppose not,’ she said, casually flicking a torn piece of paper off her arm. ‘I didn’t actually get past a secretary or a desk clerk.’

‘Because?’

‘How should I know?’ she shrugged. ‘There was talk about forms and making appointments. You know I can’t bear bureaucracy.’

‘And so you just threw it all away, like you always do,’ I stated. I went to walk away, to head toward my cabin. But instead of feeling the usual panic and confusion gripping my stomach, I felt red, hot anger. Clenching my fists, I spun around to face her again.

‘Did it ever occur to you that people were rejecting you and not the workshop idea?’ I wanted her to feel as hurt and humiliated as I had felt over and over again through the years living with her. I had always forgiven her; always put her first above anything in my life. I had thrown away any possibility of ever having a friend, so that she would be okay. For what?

‘You are weird and selfish! You never care about anyone other than yourself! Why would anyone want to listen to you?!’ I was screaming.

Mom was holding her head now, and rocking back and forth. She looked at me with imploring eyes. For once in my life, I didn’t care. I didn’t care if she ended up in the hospital tonight, even if it was my fault.

‘Stop it, Mom! Or don’t. You know, I don’t care. Do what
you want, you always do!’

I stormed out. I was getting good at this walking out thing.

There wasn’t any need to count now to get myself to my cabin. My anger focused me, and I wanted to get as far away from Mom as possible. I had tried so hard this time to make sure she was okay. But she wasn’t willing to try herself.

Maybe Dr Sharon was right. My life was as dismal as Chris’s was. But the difference was I could do something about it. I could do something about it for both me and Chris.

I didn’t know how I would do it, but I would not let Chris stay in a house where no one cared about him. And I wasn’t sure I wanted to stay in my own house any more. Mom didn’t seem to care about anyone but herself. Somehow – I didn’t know how yet – I was going to find a way to get Chris out of that awful house, even if it meant staying somewhere with him myself.

I stayed at the cabin until it was deep dark and I had to use the flashlight I kept there ‘just in case’, to make my way back down the river bank and the path to home. When I got back it was late, and all of the lights were off. The rage that had driven me out of the house had abated, but I still didn’t want to see Mom, so I was glad that she seemed to be asleep.

I put my hand on the handle of her bedroom door, almost turning it to check that she was safe. It was hard to stop being Mom’s carer. A glimmer of doubt about my plan threatened
to grip me, but then the anger I had felt earlier bubbled up, and I dropped the door handle and went to bed myself instead.

I
didn’t sleep well. I woke up in the middle of the night with stomach pains and the apprehension of having no real plan of where Chris and I could go. It seemed like hours that I was awake, not opening my eyes, but thinking and thinking about where an almost fourteen-year-old girl could take a friend who is totally physically dependent on others and needs a way to be able to talk.

I must have drifted off to sleep at times though, because I had strangely real dreams of being in an alien ship with Chris. The aliens were trying to talk to us, to reassure us that everything was okay even though we were leaving earth. But we couldn’t understand anything the aliens said. In the dream, Chris could talk and he kept yelling at them to speak his language. I was telling Chris to be quiet because I wanted to concentrate on understanding the aliens, but I was getting confused with all of his yelling.

When I finally opened my eyes to the light of morning, I had only a few minutes to hurriedly throw on some clothes and get out of the door to catch the school bus. If it wasn’t that I didn’t want to see Mom at all, I would have been
tempted to go back to sleep.

Chris and I had art second period. I went to the art cupboard to get his supplies. We had moved on from the cheap children’s paper to work on proper stretched canvas. I had not asked; I had simply opened cupboards until I found what I wanted, what other kids were using. I had flipped through the art books on one of the shelves, finding and tabbing all of the famous abstract paintings I could find, and had helped Chris to look at them. Some of them, he had spent ages looking at, his eyes moving over each detail.

Between the art appreciation exposure and some better materials, the results were surprising. Chris was experimenting with texture and colour and lines. He was developing a distinct style and he now would work on one canvas for several classes before indicating that he was done with it. Even the teacher had stopped completely ignoring us. He had taken to spending some time each class watching how Chris painted, as if he were trying to catch him out substituting someone else’s work for his. During one class the week before he had actually suggested, to Chris, as if I were not there, that he might want to look at Miro’s work to get some inspiration.

I tried my best to find our usual rhythm, feeling where Chris needed my help to guide his arm where he wanted it to go. To facilitate his painting, I had to stop thinking of anything but his painting arm. Usually it was so freeing to
do that, but today that blank mind space was impossible to achieve. My mind kept skipping to where on the planet I could take Chris.

He looked up at me with a frown.

‘I’m sorry, Chris,’ I sighed. ‘I’m just trying to think of how to help you.’

I didn’t want to say more, now that the art teacher had taken more of an interest in Chris and might overhear. And what more could I say, when I didn’t have a clue how I was going to help him, besides getting him out of a home that seemed to be breaking his heart? Just seeing him with such a downbeat expression made me want to wheel him out right then, forget about a plan. We could just start walking and not stop.

I didn’t exactly miraculously come across a perfect solution to Chris’s dilemma. Instead, I wrestled a glimpse of an idea out of the only education I had – the piles of brochures and catalogues and magazines that I had gleaned from Mr Jenkins’s office over the weeks.

I had been staying in my room the last two days, avoiding Mom, who had become very quiet again. I had already gone to the cabin that afternoon, hoping that some brilliant idea would come to me, and I would know exactly how to help Chris. I had thought about just running away with him. But
that was just ridiculous. He already had the disadvantage of not being able to walk or talk, but in his giant blue chair he was completely conspicuous as well. It wasn’t like I could easily disappear with him.

So I was thinking and flipping through magazines and catalogues that I had brought home from Mr Jenkins’s office. I wasn’t even sure what I was looking for.

My whole dresser was covered in glossy papers now. I usually only had a moment between classes to collect any new papers that were strewn on Mr Jenkins’s desk, so I tended to just grab everything. They ended up here at the end of each day.

Most of the brochures were completely irrelevant, advertising something like playground equipment, or preschool furniture. The catalogues often had a section on communication devices or adaptive technology – which meant things to help people say something when talking was difficult for them, and stuff to help people do things and use things when parts of their body didn’t work. I was learning the lingo – both from the magazines and from just being in the SE wing. There was a whole language attached to kids with disabilities.

Within these sections, I tended to find the same things advertised. I knew what Chris needed, and it wasn’t that complicated actually. He just needed a system that would let him type and move a cursor with his eyes. And it existed!
Then he just needed one of those programs that spoke typed words out. Oh – and in an ideal world, a word processing program with text prediction because of his terrible spelling and so it wouldn’t take Chris so long to talk. All of this added up to lots of money though. More than I had. More than it sounded like it was possible to get from school.

But now I was looking for something different, so I was looking through the disability and education magazines – in desperation. Chris had bigger problems than just communication.

In the last few days, he just wasn’t smiling like he usually did. He spent a lot of time frowning at me, and he wanted me to talk to him, instead of reading or communicating anything to me.

I had to find a place to take him to. And I didn’t have a clue what options there might be out there.

It was an advert that caught my attention. Near the back of one of the magazines was a half page ad for a conference that only caught my eye because of the title, ‘The Role of Communication Technology in Special Education: Reaching the Non-Verbal Child’. Then I noticed the date – this weekend. And then I noticed the venue – The Harrison Hotel, Hampton. That was only two hours away, and I realised excitedly that we could take the train! I could get Chris onto a train.

Reading the fine print, the conference was probably for teachers and people like that. I was sure it wasn’t for kids
looking for a new home. It wasn’t a solution, but it was a direction. There was a blurb near the bottom saying
booths still available for representatives of special schools across the region
, so maybe there was a possibility of finding Chris something better? Surely at a conference about communication there would be someone, anyone, interested in helping Chris! I just needed to get him there, and I only had two days to figure out the details of how.