Finding a Voice (10 page)

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.

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 back 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.

‘This is Lucy,’ Cynthia introduced when we were all back in the van.

‘Hi, Lucy,’ I greeted her, but there was no response from her whatsoever.

Cynthia and I sat in the only two seats at the front of the van. The whole back of the van was open, with metal strips running from back to front where straps could be fitted in slots, attached to parts of the wheelchairs, and ratcheted tight so the chairs didn’t move or tip over while we were driving.

We drove on for another ten minutes or so, Cynthia singing or humming the whole way, and then turned into the drive at a big bungalow. Mr Jenkins had given me directions from this house to the nearest bus stop, so I more or less knew where it was in town. I hadn’t known what to expect though; maybe something more hospital-like? This just looked like an ordinary house, with a bit of a flower garden and yellow curtains in every window. The drive was big and there were three cars parked outside, but then, the house looked pretty big too, big enough that it could be a home for a very large family.

When I followed Cynthia and Lucy in, pushing Chris’s chair, I immediately knew that this was not an ordinary family home. It was more a feeling than anything that I could see. Things just didn’t seem quite right to be a usual home. The walls were painted a warm lilac colour, which coordinated with the yellow and lilac curtains, and yet the tile floor seemed too institutional for the soft colours above it. Plus, there didn’t seem to be any of the knick-knacks that would usually be in such a coordinated house. No paintings, no shelves or china cabinets with ornaments, no photos on
the wall. It was just – pretty but empty.

Part of what contributed to the empty feeling was how big and open the room that we had entered was. It was huge. There was a table that would fit more than eight people on one side of the room, with what looked like a normal-sized kitchen in an L shape at the end. On the side we had just entered there was a very small sofa and a large television. That was the only furniture in the room. But when I looked around I could see why it needed to be so big and so open. Besides Lucy and Chris, there were three other kids in wheelchairs in the room. I had never seen so many wheelchairs in one place before – not even in the SE. They took up a lot of space.

There was another woman in the kitchen and she came out when we arrived.

‘Hi, Lucy, Hi, Chris,’ she greeted, with actual eye contact and a bit of a squeeze to each arm. ‘Hi, Jo. I’m glad you could come!’

For the first time since leaving the school, I felt that I might be welcome here. And I was relieved to see that someone in Chris’s house actually talked directly to him. This woman was very young; she didn’t look much older than me. She was dressed in jeans and a hoodie that I wished I had myself.

‘Sit down,’ this woman invited. ‘I’m Alison, and, before you sit down actually, come meet Chris’s housemates.’

I was introduced to Jamie, Teresa and Sam. Most were not
able to talk, or at least they didn’t greet me, but Alison made eye contact with each one as she introduced them and gave a small bit of information to me, almost as if they were introducing themselves.

‘Jamie is the oldest here. He’s actually leaving us for better things soon, aren’t you, Jamie?’ Alison said, smiling at him. He gave the slightest grin back.

‘And this is Teresa.’ Alison had led me over to a girl, whose wheelchair had a kind of a tray over it, with symbols similar to the ones I had tried to use with Chris on it. ‘Want to say hi Teresa?’

Teresa’s hand hovered over the tray for a few seconds, and then hit one of the buttons. It lit up and an electronic voice said,

‘Hi. I am Teresa. I am very happy to say hello.’

I was intrigued by this and wanted to ask more questions, but Alison moved me along to meet the last housemate, who was stationed in front of the television, watching cartoons.

‘And this is Sam, who was our baby until Lucy joined us a month ago. He’s a little jealous, aren’t you Sam?’ she teased.

I was surprised to hear him respond, beginning to assume that all of Chris’s housemates were nonverbal.

‘Am not Aly!’ he denied, ‘I’m ten and she’s only six you know.’

‘I know, Sam-my-man. Just teasing. A game of basketball after supper?’

‘I’ll win, you know,’ Sam informed me.

‘Yep. It’s in my job description: lose to Sam in basketball every shift.’

Sam chuckled.

When I looked around, Chris had disappeared. I assumed that he must be with Cynthia, since she had also disappeared. So I decided to sit down at the table as Alison had invited. It was kind of weird that someone would just disappear without telling you. Of course Chris couldn’t tell me, but shouldn’t someone else have told me for him?

Alison had headed back into the kitchen, obviously making dinner. There were three kids parked in various spots in the big room, and only one – Sam, who seemed to be doing anything, even if it was only watching television. I wanted to bring them all around the table, if only to make it seem that we were all having a cup of tea and a chat, not unlike what Grandma and I did when we were together – pretend we were talking.

I didn’t though. There seemed to be definite, unspoken structure to this house. So I just sat for a few minutes, waiting to be told what was happening next. Then I got curious, and my curiosity overcame my apprehension. I headed down one of the two wide hallways leading from the main room, looking for Chris.

I found him all right. The first door off the hall was a bathroom with a wide door leading into it, and the door was
open. There was Cynthia and another woman lifting Chris, whose jeans were down to his knees, onto a kind of a seat over the toilet. He didn’t see me, but I certainly saw a lot more of him than I had been planning to.

I quickly stepped out of eyeshot, but not before one of the women helping Chris saw me.

‘Be out in a minute,’ she called casually, as if it were an everyday occurrence for visitors to see the occupants of the house with their pants down.

‘Looking for a toilet.’ I stumbled on the words of my excuse.

‘Yep,’ the same voice replied. ‘Down the other hallway is the staff toilet.’

I didn’t want to argue that I wasn’t staff, just someone trying to have a normal visit with a friend. I hid in the staff bathroom for a few minutes, completely embarrassed. I couldn’t stay there forever. Besides, even though I felt mortified, it had seemed that nobody else thought I had done anything wrong. So I took up my seat at the table again.

Eventually, Chris emerged, with the third woman pushing his chair. She parked him beside me, without even saying hi, and then wheeled Lucy away. I just nodded at Chris, not able to talk to him after the bathroom incident.

Cynthia appeared again, with a tray of small plastic cups filled with pills. She went to the kitchen, where Alison handed her a small dish of yogurt and came back to give
Chris the tablets from one cup, each of the five pills in a spoonful of yogurt. She then went to Sam and to Teresa, feeding them medication as well. Now this was normal life to me. Despite still feeling uncomfortable, I almost smiled to think that mine was not the only household dominated by medications.

‘Do you want to help me in here, Jo?’ Alison called from the kitchen.

I was glad to have something to do other than sit with Chris and wait for whatever was coming next, which probably involved taking care of some kind of physical need which I didn’t need to know about. Alison had plates and bowls all over the counter. She was spooning some of the chicken that she had taken out of the oven into a blender.

‘Can you put some potatoes on those seven plates please? You’re eating with us, right?’ she asked.

‘Yeah, sure.’

I helped dish up the food, while Alison blended some of everything into mush and spooned it into two bowls.

Then it was a whirlwind of activity, with five wheelchairs being moved to the table, plates going on the table, assistants tying bibs. Three kids had to be fed, with only Sam and Teresa able to feed themselves, using special bowls that stuck on the table and adapted spoons to make it easier to get food from the bowl to their mouths. Every able-bodied person, including me, assuming my usual role of assisting Chris, had
jobs to do. Dinner here was very different from our private lunch periods.

Still, with all of the feeding, wiping mouths and moving dishes so they didn’t get overturned, the women working managed to keep up a steady stream of conversation, none of it relating to any of the kids and teens around the table.

‘So what were you saying about her dress?’ the woman who had not been introduced to me asked Cynthia.

‘Oh, yeah,’ she said, obviously picking up from an earlier conversation. ‘She tried it on last night, after it came back more than a week later than the alterations were supposed to take, and you wouldn’t believe it, Mary – it still isn’t right!’

‘No!’ exclaimed Mary. ‘Watch your milk now, Teresa!’ I caught the plastic cup just before it toppled from the table.

Alison turned to me to explain what the conversation was about.

‘Cynthia’s daughter is getting married this weekend.’

‘Mary! Mary! Mary!’ Sam interrupted, waving his spoon toward her. Cynthia took his spoon, putting her finger to her mouth to indicate for Sam to shush.

‘What’s she going to do?’ Mary asked, ignoring Sam and feeding Lucy another spoonful of mush.

‘No choice. It just has to go back again and hope it’s right by Saturday.’

The conversation continued like this, while everyone was fed at breakneck speed. With all of the activity going on,
Chris was thrashing non-stop. It was hard for me to dodge his limbs. I had learned by now that when he couldn’t stop his arms and legs, I would just get as quiet as possible myself, relaxing every part of me and shutting up, and his body would start to slow down too. But it just wasn’t working in this busy place. I wondered if it was always so chaotic.

After dinner, everything was the same, only in reverse. I wondered what the rush was. After all, it was only 4:30 and there was a whole evening yet!

I offered to help with dishes and clean-up, as Alison was in the kitchen again, and I thought she might be the best one to ask about what Chris did at home. Since Mary had emerged from a side room with a huge armload of laundry and started to fold it, and Cynthia was busy writing in a binder, Chris and most of his housemates were still parked around the table. Only Sam had been moved. He was in front of the TV again. I moved Chris’s chair to the entrance to the narrow kitchen. His chair would not actually fit in the kitchen, but at least he was close enough to talk to as Alison and I worked at cleaning up the mound of dishes and mess.

‘So what is Chris interested in? I know he likes painting, but what else?’ I asked Alison, looking at Chris and adding, ‘Is that okay to ask, Chris?’

He didn’t smile or give any response to me. He wasn’t looking at me. He didn’t seem to be listening. Ever since we had left school it had been as if he had been unplugged. I
couldn’t read his facial expressions; it was as if he wasn’t here with me at all.

‘I’m pretty new here, and I only work when someone can’t work,’ Alison said, her brows coming together in concentration. ‘Hmm. In the summer we went to a couple of music festivals and he seemed to like that? And he loves the bathtub, but only if it’s super warm. He hates it when it gets cold! Right, Chris?’

I hardly had to know how warm he liked his bath water. It wasn’t the usual information one needed to know about a friend.

‘How about his family? Do they come and visit him?’ I tried, stealing a look at Chris to see if he was listening. He seemed as tuned out as ever.

‘Chris is a ward of the state,’ said Alison. ‘I can’t remember exactly why. It’s in his file. He’s lived here for a few years though.’

I thought about that. Things might not be easy living with my mom, but at least I had one. Chris had no one. Alison seemed to be the nicest of the staff working here, and she didn’t even seem to know him that well.