Finding a Voice

by Kim Hood

  Last period, I was seeing Dr Sharon again. Maybe I would say something to her. Apparently there was something called ‘client confidentiality’, which Dr Sharon had explained meant that anything I said to her could not be shared with anyone else.

  It was getting easier to talk to her now. She had this way of not even asking me anything, and yet somehow I ended up talking about things I hadn’t even meant to talk about.

  Today was like that. I walked in having decided to confide in Dr Sharon about my lunch hour with Chris – and I did start to talk about just that. I told her in detail about how I had planned the test, thinking about how Chris would be able to communicate with me if he was able to comprehend words.

  ‘It was amazing. He can actually understand me!’

  Dr Sharon was sitting forward in her seat; still and fully listening as usual. She never reacted with more than subtle facial expressions to anything I said, and it was the same now. She smiled slightly but didn’t offer any comment. I sometimes wondered if I revealed I was an axe murderer in these sessions if she would just nod and encourage me to go on speaking.

  ‘Just think of what Chris can say if he has a way to say it! I just know I’m going to be able to make his life so much better.’

  ‘It feels good to help other people,’ Dr Sharon commented.

  ‘And that’s what I’m going to do at home too. My mom is never going to have to go back into the hospital again.’

  I had not meant to say this at all. It just fell out.

  I really did feel more hopeful this time. Mom seemed so much calmer than usual. She hadn’t once been sarcastic or snappy with Grandma like she usually was. And she wasn’t staying up late pacing around. She had even done a little housework on Sunday, almost like a normal mom.

  It had made me want to work especially hard to make sure that I kept her calm and well.

  ‘I’m going to totally listen to her, so I can know right away if something is bothering her. She can get so frantic about things if they aren’t fixed immediately.’

  ‘What things would bother her, Jo?’

  ‘Anything really. It could be that the kettle isn’t working.’ I thought back to the time that had happened. It had sparked her to check all of the appliances, finding that the iron, which we hadn’t used in ages, also didn’t work. And that had led to a two-day rant on how multinational companies were keeping everyone slaves to consumerism.

  ‘Small things can kind of tip her over the edge. But if I’m there to know the small things that bug her, she will be better. And I know her; I know the things that have to be right to keep her well.’

  ‘Like making sure the kettle is working,’ Dr Sharon stated.

  ‘Yep.’

  ‘And what if it isn’t working? What would you do?’

  ‘I’d hide it and make her tea in the microwave. And then I’d buy a new one before she noticed it was gone.’

  ‘Do you notice something?’ she hinted. ‘Your relationship with your mom and the one you are creating with Chris are pretty similar aren’t they?’

  ‘What do you mean?’ My defences rose up.

  ‘You want to fix them both.’

  ‘That’s not true!’ I denied. ‘Is it a crime to hope someone’s life can be better?’

  ‘Sometimes you need to take the kettle to the repair shop because you are not a small appliance mechanic.’

  ‘What does that mean?’ I felt annoyed. Dr Sharon usually just nodded in agreement when I spoke. Why was she trying to make me feel bad, just when everything in my life was going so well?

  ‘Jo, it sounds like you are a fantastic help to your mom and to your friend. But Chris is Chris, and your mom is your mom. Not everything can be fixed.’

  I didn’t respond. She was getting everything wrong.

  ‘Ok. We’ll leave that,’ she said. ‘What about you? Who is in your life helping you?’

  ‘I’m fine. I don’t need any help.’

  I realised that the people I had thought were helping me – Mr Jenkins, Dr Sharon – were as useless as anyone else who had ever tried to help me. They didn’t understand me, and I didn’t need them.

  The only thing is, as I left Dr Sharon that day I had this feeling in the centre of my stomach that wasn’t there when I went in to see her. It was the feeling that I might not be in as much control of my world as I wished I was.

  CHAPTER FOURTEEN

  Each day with Chris there was new excitement. I would help him eat as quickly as he could manage, gulping down my own food in between Chris’s mouthfuls, so that we could work on learning to talk to each other. Using the red and green dot system, I had asked him question after question about things that I definitely knew the answers to. I had wanted to be sure that Chris was getting it.

  He was. His eyes were focused when we worked on questions, just like when he was painting.

  After a couple of days of questions like, Am I sitting on a chair?, though, he stopped answering me. His eyes were no longer on me and he wouldn’t move his head to either side.

  I was quicker to figure him out now though. He was bored. What was the point in answering questions like these? It was probably more interesting for him when I rattled on and on about my life and didn’t ask him a thing.

  So I started to ask Chris about things I wanted to know.

  ‘Do you have any brothers or sisters?’

  No, he didn’t.

  ‘I don’t either. It’s just me and my mom.’ I was so used to being the odd one out with no siblings; it was nice to find out I wasn’t so alone.

  ‘Does your dad live with you?’

  No. Another way we were the same! I didn’t go as far as asking whether he had a father. As open as Mom was with me, this was one area she refused to answer any questions about.

  ‘So is it just you and your mom?’

  No.

  I was a bit stumped by this one and thought maybe I had read an answer wrong, or that Chris had made a mistake in answering, so I went on to other questions.

  ‘Ok. A bit about me. I’m thirteen, for forever it seems. Fourteen in a couple of months though.’ I had shared so much personal stuff, but this is the first time I’d told Chris any of the usual facts. ‘How old are you? Oh, sorry, that won’t work. Are you thirteen? Fourteen? Fifteen? Are you saying fifteen?’

  I had to ask each age and wait for the answer. Chris was fifteen. I had been able to get to the answer, but it was terribly tedious if this was the only way to communicate. Plus, I had to ask all the questions. He couldn’t ask me anything. There had to be a better way for us to talk.

  I had lots of questions to ask Mr Jenkins about Chris now. I wanted to know so much more about him, but I also wanted to have more avenues for things to talk to Chris about. If I had a bit more information, I would at least have some clues as to things to ask.

  ‘Mr Jenkins, who does Chris live with?’ I interrupted him from his marking of the assignment I had handed him during our science class.

  ‘He lives in a group home for kids with physical and intellectual disabilities.’

  ‘Oh.’ That explained the difficulty I had run into with my questions about his family. ‘So does his mom live nearby? Does he see her often?’

  ‘That’s kind of confidential stuff, Jo. I can’t ask Chris if it would be okay to talk to you about his family, or lack of family.’ Maybe he couldn’t ask him, but I could.

  I had decided not to let Mr Jenkins in on our communication lessons. At first I had wanted enough evidence to prove him wrong about Chris’s abilities to understand and be understood. Now though, I was feeling kind of protective of the fragile strand of connection that I shared with Chris. He had chosen to talk to me, and I didn’t want to give up our secret. I was afraid that it might be taken out of my control before we could explore where it might lead.

  ‘Is asking how he gets to school confidential?’

  ‘I guess not. The home he lives in has a special van that lifts Chris’s chair onto it. The staff who work at
his home drop him off and pick him up every day in the van.’

  ‘Like the way wheelchairs get on the bus?’ I had been on the bus when it came to a stop where someone in a wheelchair wanted to get on. The whole bus lowered down, the person wheeled on and then the bus lifted up again.

  ‘Same kind of thing, only the lift is hydraulically raised and lowered, rather than the bus.’

  ‘What does he do at home? Like, does he have anything he’s interested in?’ I launched into another question.

  ‘Now you are getting outside of my knowledge. There’s a dividing line between school and home, same as for you,’ Mr Jenkins said. ‘I could probably arrange for you to go and visit Chris in his home though if you are interested.’

  ‘Cool. I’d like that.’

  Things were better than they had ever been at home. I was making sure of that.

  I still left the house before Mom began to stir, but I made sure that her medication was ready for her, and that her favourite breakfast, French toast and bacon, was prepared and ready to be put in the microwave when she woke up. Then I rang her after first period class.

  ‘Wake up call, Mom,’ I said, trying to sound as cheerful as possible.

  ‘Thanks, Jo,’ she mumbled, never much of a morning person.

  ‘What are the plans for today?’ Every night I helped her to write down what she was going to do while I was at school. For once Mom was going along with something that might actually help her.

  After talking with Dr Sharon I had thought about what it was that often began Mom’s spiral into uncontrollable thoughts and feelings. She had too much time on her hands. A job was not a possibility. She always ended up quitting or being fired. Mom didn’t value things that employers usually felt were important, like being on time and staying until quitting time.

  She also wasn’t even able to operate in the normal world of filling time with the things that needed to get done: cleaning the house, cooking, doing the shopping, paying the bills. These had been my concerns as long as I had been able to do those things. I supposed it must have been Grandma who made sure the major things were done before that. I remembered there used to be a cleaning lady who came in once a week, which Mom had hated, and eventually she had literally chased her out, with a broom.

  So Mom needed a project. She needed something to focus her energy and mind.

  She could spend days or weeks obsessively learning about something she was interested in, writing copious notes that filled every surface in the house. This could be dangerous territory though because she was usually interested in some controversial cause that got her all upset. And she usually got upset in a crazy sort of way.

  Plus she needed to see people. When she was in the routine of going to the drop-in mental health clinic she was always more steady, but she usually only did this in spurts, when she was focused on being normal, mostly for my sake. And this could lead to rants about her guilt about being a crazy mother. So, going to the clinic was not ideal either.

  Mom had come up with a project herself. She was developing a series of workshops for kids to introduce the classic children’s books. Then she planned to go to the libraries and community centres to see about putting them on.

  ‘It’s The Lion, the Witch and the Wardrobe today, Jo,’ Mom said, suddenly sounding much more awake. ‘So many great characters. What do you think about getting some kiddies designing costumes of their favourite character?’

  ‘Sounds great!’

  It was good to hear her so excited about something kind of productive – and at 9.30 in the morning instead of 2a.m.

  CHAPTER FIFTEEN

  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 wi
sh I knew why Chris was so vehement about not using the pictures. What had happened to make him hate them so much?

  CHAPTER SIXTEEN

  Mom 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.