by Laura James
Often after supper we would go to synagogue as a family. We drove. To do so was against Jewish law, but then so was the bacon my father sometimes ate when not at home. It worried me such rules were being broken. I didn’t believe there was a god that would punish us, but what if I was wrong?
I was always slightly afraid of the synagogue as a child. The men took it in turns to stand guard outside and I was frightened of the nameless thing they were protecting us from. On a wall inside, a plaque talked about the death of six million people in the Holocaust. I didn’t know what this was, but I did know it was somehow relevant to the sentries outside.
Mostly, however, I found time in the synagogue intensely boring. There were, of course, words, but these were in another language, one whose fancy letters I struggled to make out. I would distract myself by reciting as much of the Hebrew alphabet as I could remember. Alef, Bet, Gimel, Dalet . . .
I would long for the service to be over. Afterwards, people would stand around in the car park talking, the conversation often loaded with emotion, voices rising and falling. Exchanges I couldn’t understand. I think this is why I eventually moved to the country, as it is quiet, both indoors and out.
My office at home could not be further from the organized library space of my daydreams. I try hard to keep some kind of order, but it is full of paper that seems to multiply on a daily basis. I cannot tame the flow. I don’t know how to keep on top of it. Am I meant to keep my electricity bills and, if I am, for how long? Is it really necessary to keep paid parking fines from 1996? I can only deal with things like this if I have been explicitly taught how.
Tim – too arty for the mundane and unable to commit to staying on top of the direct debits, the children’s UCAS forms or insurance renewals – is happy that my insistence on being in control means I will not allow him to handle such things. In his hands I am sure we would be plunged into chaos. Despite this, I fear every single task. What if I accidentally put an extra zero on a number on a direct debit form? What happens if I get my bank account number wrong? What happens? It’s the start of so many of the conversations I have with myself.
Today, I go through my Sunday routine as I have every week since I can remember. I paint my toenails, wash my bed linen and then look at my diary for the week. It always feels as if I won’t be able to complete the tasks listed or make all the journeys planned. I have to try to imagine what each day will be like so there are no surprises. Good or bad. I make no distinction between the two.
I sit at the kitchen table. Shabby and warm, it’s the room where my family wanders in and out looking for lost earphones, books and wallets. Where they come to ask for appointments to be made or cancelled. To complain about the speed of the broadband. To ask for lifts from one end of Norfolk to the other. This room holds my fondest memories of when my children were small and has been the backdrop for the whole of their lives.
It’s here they have announced late in the evening that they need to go to school the next morning dressed as dinosaurs. It’s here they have sobbed over tricky homework and broken hearts. And it’s here that Tim and I have had all our important conversations. It’s a cliché, but our kitchen is the epicentre of the house and I cannot imagine what it will be like once the children have gone.
I look in my diary. I have an appointment with a therapist on Thursday. It has been set up by Dr Somayya Kajee, the psychiatrist who first diagnosed my autism. I am nervous. I have had therapy before, but have always felt as if I were somehow doing it wrong. Choosing the right therapist is rather like choosing the right boyfriend and I have placed all my trust in Somayya having found the right one. I need this to work. It feels like my last hope. I need things to change and this therapy needs to deliver.
The new therapist – whom I will simply call M – will probably want to talk about my childhood. Others enjoy reminiscing about penny sweets, bad pop songs and TV programmes they spent hours watching. I do not. I don’t view this period of my life with any great affection. Most of the time I felt that appalling prickly-on-the-inside sensation that you get just before you cry.
I feel I must prepare. Should M ask me questions about childhood I want to be able to answer them accurately. There’s a cupboard in my office where we keep the important things: tax returns, passports, birth certificates. At the back, on a high shelf, is my childhood photo album. I take it down and the dust I disturb makes me itch. It was put up there when we moved in more than sixteen years ago and hasn’t been touched since.
Back in the kitchen, I wipe down the red plastic cover and feel my heart rate rise as I open it. The pictures start when I am around seven months old. I can’t feel anything for the baby in the black-and-white photographs. She is as alien to me as a random stranger. I age progressively. I am four and wearing red shorts and a white T-shirt. I am seven in a blue dress with a swirly pattern. I am ten and in my smart school uniform.
I try to feel something. Anything. I want to tell the child in saturated Kodachrome that I understand why she is the way she is. I want to tell her it isn’t her fault. Isn’t our fault. Isn’t anybody’s fault. That it will be OK in the end. I want to tell myself that too. Here and now.
I’m drawn to the period detail. The television with its spindly legs, which, throughout my childhood, looked old-fashioned but now looks rather stylish. The drinks cabinet with curly carved wooden legs throws up interesting memories. As a child I would sit underneath it for hours, with Fluffy, my toy rabbit, and a book. I liked to imagine it was a machine that could transport me to the world within the pages.
In one photograph I’m tucked up in bed, cradling a hot-water bottle. Chickenpox. The doctor had just been. His name was Dr Newman and, even as a young child, I could feel his air of superiority. When he said of each new symptom that it was ‘just one of those things’, I wanted to ask why. What does ‘one of those things’ mean?
I’ve learned over the years that patients with complicated conditions, like EDS, often feel like this when faced with one doctor after another. I am not, though, sure that many feel it as early as five years old. Dr Newman was an odd-looking man. He slightly resembled Winston Churchill, but his hair was sparse and dark and oiled down onto his head. There were gaps where his pink scalp peeked through and it made me feel a little sick to look at it. His hands were huge and his fingers fat, like sausages.
Medicines were a big part of my childhood. There was the pink one for earache, the white one for tummy ache, the chewable Junior Aspirin, the orange one for sore throats, and Phenergan for just about everything else. For anything external there was witch hazel in its brown glass bottle with vertical lines that felt nice under my fingertips, and the pungently scented pink Germolene.
Then there were the pills my mother took. I remember knowing early on that medicine split into two categories: good and bad. Sore throat medicine was good but the pills my mother took for her ‘nerves’ were bad. She was often ill. She took a lot of pills. Thinking about that time, I feel a huge sadness. For her. For me. For my father. I also remember knowing beyond doubt that to get by you had to show no weakness and allow no one to discover the strange things that went on in your head.
I push my chair back from the kitchen table and stretch. Huxley, on the kitchen floor next to me, follows suit. Looking back is painful, so I do what I do when trying to process complicated emotions: I send myself back to that place. I lean forward and hit the keys on my laptop . . .
Big School – Autumn 1975
I am in the school playground. The ground is hot and feels sticky under my new black Start-rite shoes. Shoes have to be either Clarks or Start-rite as these are good for your feet. The pretty shoes at the cheap shoe shop are not good for your feet, so you can’t wear them.
I like my new shoes because they are shiny, but I don’t like them because they are hard. They are nice to look at, but not to wear. I have to have white knee-length socks. They twist around and fall down. I don’t like my socks. They are not good socks.
I ha
ve been at this school for three weeks and two days. It makes me sad. I want to be back at Mrs Hadar’s kindergarten. I liked it there. We had cold milk and biscuits at ten o’clock every morning and a nap in soft blankets every afternoon.
There was a garden at Mrs Hadar’s with a sandpit. The sand was different to the kind you get at the seaside. The grains were smaller and softer and I liked to let it run through my fingers. Sometimes the other children would annoy me by playing messily with the sand, getting it wet with water, and being noisy while I just wanted to touch the sand in quiet.
I am not allowed to go back to Mrs Hadar’s. Another girl, Emma, is allowed to because she has a brother and sometimes, like on Christmas shopping day, she is allowed to go with her mummy to collect him. Her brother is horrible. He isn’t nice and isn’t clean. But maybe it would be OK to have a brother if it means you can go back to Mrs Hadar’s.
Mostly I am sad now. I can’t play with Geoffrey anymore. Geoffrey is Mrs Hadar’s sausage dog. He is golden brown and has a nice red collar. I always draw a picture of Geoffrey on Fridays when it is drawing time. I am bad at drawing, so I do not have a nice picture of Geoffrey. This makes me feel sad too. When I grow up I am going to have a sausage dog and I am going to call him Claire and give him a pink collar. Mrs Hadar told me you can’t call a boy dog Claire, but I think maybe you can, if you’re a grown-up and you give him a pink collar.
I like things to be pink. At Mrs Hadar’s I was allowed to wear pink ballet shoes. Only they weren’t called ballet shoes, they were called slippers. I think this is because you can’t wear them when you go outside. At school you have indoor shoes and outdoor shoes. The indoor shoes are called plimsolls. I don’t like them because they smell horrible. Mummy says this smell is called chemical.
We will have to go into the classroom soon. When the bell rings. Teachers take it in turns to ring the bell. It is bad to be standing next to the teacher who is ringing the bell because it is loud and it hurts your ears. I don’t want to go inside. The room is hot and it smells horrid. I think it is because of the milk, which sits by the window and gets all hot. I am told I am naughty because I won’t drink the milk, but I can’t because it is warm and it tastes funny. Mummy says I must try, but I don’t want to.
School is very big. It’s much bigger than Mrs Hadar’s, which was just like an ordinary house. We go in through the side entrance because children are not allowed to go in the front. I don’t know why. There is one very big building and the new block, which is smaller, and some mobiles. The mobiles are my worst rooms because the floors wobble when you walk on them and I get scared the mobile might fall over.
Today we are going to be making a collage. It will be on one big piece of paper and everyone on my table will have to stick things on. Working with the other children is hard because they do it wrong. I am in Panda Class. A panda is a black and white bear that lives in China. Next year I will be in Neptune, which is a planet. It is the furthest from the sun and seventeen times bigger than Earth, but Pluto is my favourite because it is the smallest and it has five moons, not one like the Earth. After that I don’t know what class I will be in and this makes me sad because I like to know what is going to happen.
There are lots of children in the playground now and we have to line up to go into school. We have to stand in pairs and hold hands. I don’t like holding hands and I don’t have a special friend, so Mrs Everett chooses a partner for me.
I don’t want a partner and don’t see why I have to have one. I have to hold Francine’s hand, which feels slippery and wet. I would like to be at the end of the crocodile on my own. Or I could be at the front, but not in the middle because that feels squashy and like I can’t breathe.
In the classroom we have to listen to a story. I can’t concentrate on the story because we are sitting on the floor and the carpet is itchy. It’s not like the carpet at home. It is made of green squares and if something gets spilled on it and it can’t be cleaned up, then a new square is put in. I think the old, unwanted squares are lucky because they don’t have to be in school anymore. I can’t sit still because of the carpet and it is making Mrs Everett look at me a lot. When she looks at me I don’t know if she is cross or not, so I make sure I never look at her and then it’s like she can’t see me.
It will be playtime soon. I don’t enjoy playtime because I don’t know what to do. Some of the girls play games, like one of them being the mummy and the others being the children. I don’t want to do this. I tell them I think it’s boring because it is.
Mrs Everett told me that we have to go into the playground every day to play even when it is snowing, but if it is really heavy rain we can stay indoors. Every day I hope it rains.
I want to stay in my classroom and not go and play in the playground but that is not allowed. Sometimes I sit on a bench and read a book. I am reading What Katy Did. It’s about a girl learning to be good. I have read it three times. Some of the children in my class can’t read very well and some can’t read at all. They are called slow and might have to go in a different class if they can’t learn. I won’t get moved to the slow class because I am clever. I might get moved up a year, though, as Mrs Everett tells me I am not being stretched enough. I don’t want to be stretched. I think it might hurt. If I do move up a class maybe I will be able to take Fluffy.
I would like to bring Fluffy to school because he is a good friend. Fluffy is my favourite toy, but Mummy and Daddy say I will lose him and I will scream. He is a white rabbit. I am allowed to take Sheena, a pink and cream bear with orange plastic eyes. She is my second favourite toy. I think Mummy and Daddy think I would not scream as much if I lost Sheena.
After playtime we have to go back into the classroom and play with the sand. It isn’t as nice as the sand at Mrs Hadar’s. It is hard and scratchy and there is not very much room for all the children. I don’t want to play like this, so I sit in my chair. Mrs Everett is pulling a face and tells me this is naughty and I must do what everyone else is doing.
I look at the clock and see that it is a whole hour until lunchtime. I don’t want to stand at the sandpit for an hour. It makes me feel dizzy and hot. I watch the second hand of the clock go round and round and count every second from one to sixty. I have to do this sixty times but it is OK because I am good at counting. I can do everything they ask us to do at school, but I don’t tell them that because there are some things I don’t want to do. I never put my hand up because it hurts and it makes me feel strange to be talking out loud in front of the whole class.
When I am on my own with grown-ups I am called a chatterbox, but when I am at school I am called quiet. I am a quiet chatterbox. Sometimes I say this in my head. Quiet chatterbox. Quiet chatterbox. Quiet chatterbox. I like that there are lots of T sounds and if you say the words really quickly in your head they sound like a train and sometimes in my head I add choo choo at the end. Quiet chatterbox. Quiet chatterbox. Quiet chatterbox. Choo choo.
After the sandpit there is lunchtime. This is the worst part of the day. School food is bad because it is grey and slimy. I don’t know exactly what some of the food is called and I don’t need to know because I will never ask for it. Anywhere. The worst is the mashed potato. It is lumpy and has bits in it that are like string. They don’t put it on your plate with a spoon. They use an ice-cream scoop. This is really stupid as ice-cream scoops are for ice cream. Today it is mashed potato and meat pie. The meat is in a sauce that is like jelly. For pudding there is semolina with jam in the middle, which is disgusting. All the food is soft. I like food you can crunch. Like crisps and carrots and chips.
The dinner ladies give me food that tastes so horrible it actually makes me feel sick. You get into trouble if you don’t eat the food, but I just can’t. Even the smell in the canteen makes me want to be sick. I keep asking if I can bring a packed lunch like some of the other children. I am not allowed though. I don’t know why and it isn’t fair.
When I sit in the canteen I feel a prickly feeling inside. I d
on’t want to eat the food. It feels funny in my mouth and then my chest feels like it is moving upwards and my mouth won’t chew even when I try very hard to make it. I don’t think different foods should touch each other but the dinner ladies won’t help when I ask for things to be away from each other.
Today I don’t eat lunch and get told to stand in the corner of the playground until the lunch break is over. I like this because I am alone, but I don’t like it because it makes me feel hot and wobbly and like I might fall over.
Just before lunchtime ends, Mrs Everett takes me into the classroom to have a talk about food. She asks me why I won’t eat it and I tell her it is because it is disgusting. She tells me that this is a rude thing to say. I don’t think it’s rude, I think it’s true. She asks me if I like school and I say I don’t like it because it is stupid and not like Mrs Hadar’s. Mrs Everett tells me I am spoilt and might have to go to see Mrs Sturdy, the headmistress, and tell her this.
Mrs Sturdy is the boss of the school and if she knows that the food is bad she might be able to change it for me. She also might be able to get better sand and cold milk. I tell Mrs Everett I would like to go and see Mrs Sturdy and this makes her sigh. I once asked my friend Hazel why grown-ups make that noise. She said it is called a sigh and people do it when they don’t like something or are a bit cross. I still don’t know why grown-ups sigh or what it means. When I ask them they sigh more and that makes it even more confusing.
There are many people at school who tell lies and I would like Mrs Sturdy to know this because telling lies is a bad thing to do and she can make them stop. Every time someone lies I write it in my notebook. I write about everything in my notebook. I am a good writer – much better than other children of my age.
Sometimes I write about the other children. I wrote that Katherine is the nicest. She is in my class. She is very pretty and has good hair, which is never knotted. My hair is long and is often tangled. I hate having it brushed. I am taller than Katherine and much thinner. I wish I looked more like Katherine and less like me.