Shtum (19 page)

‘Some of you may think harshly of me for leaving the care of my son to his father and grandfather, or for leaving my husband.

‘I won’t make any excuses, because I can’t make you walk in my shoes any more than I can make you walk in Jonah’s, all I can do is relate my story in so far as it relates to Jonah and Jonah’s in so far as it relates to me.

‘You have seen his picture, I know. He is beautiful. Everyone commented on it when he was born – and yes, I know that every new mother thinks her baby is the most beautiful baby ever born and that everyone tells her so, but with Jonah, with Jonah it was true. He looks like neither of us, Ben or me, he looks like himself; apart from his grandfather’s amber eyes he is as individual as it is possible to be.

‘When Jonah was born, one of my closest friends had a three-year-old boy who just would not talk. He was difficult, odd, his behaviour irritating and I’m ashamed to admit that I pitied her. Somehow – or at least that’s what I believed at the time – she pulled him out of it, bullied him, demanded that he speak and he did. Slowly at first and then in great flowing sentences. I was in awe of her, sang her praises at every opportunity. He has Asperger’s, is now sixteen, goes to a mainstream, selective school and is a virtuoso on the piano.

‘It never occurred to me that I would follow her down the same path, but it happened. Jonah’s early milestones were severely delayed, but I didn’t panic – we put it down to him being top heavy, Ben and I, and laughed about it and made up rhymes about him: “He’s fat, he’s round, he must weigh fifty pounds, Jonah Jewell, Jonah Jewell.”

‘But it wasn’t that at all.

‘He wasn’t talking and he wasn’t walking, he wasn’t playing with other children and I convinced myself he was shy.

‘Then, when he was about two and a half, he forced out a word. Ben and I had reported words to each other before then, but we were both lying to ourselves. But this was a word. My son’s first word, the sound that lit up our world, was “bubble”. In the bath, with us both present, Ben blew bubbles in the air for him to pop and as we both pressed the word on him, he repeated it. “Bubble,” he said. “Bubble, bubble, bubble.” And then everything was okay. “Bubble” was followed by “door” which was followed by a handful of other words and we were off and running.

‘But it stopped as suddenly as it had started. Jonah would use a word, just once, and never use it again, however much I prompted him, pushed him, cajoled and withheld his favourite food. Then “bubble” disappeared and he was silent.

‘This doesn’t happen. Once you know a word, you know a word and then two and three. Once you know one, others follow, you build sentences, you speak, it’s natural. I became desperate and Ben didn’t. I don’t know why he could accept it and I couldn’t. But I resented him for it and started looking for causes. From which side of the family did this nightmare emanate? Was it the Jewells or the Carlins that carried this devastating gene?

‘When Jonah started Northlea Nursery it was painfully obvious how different he was, but still I hoped. And the cruellest thing sometimes is hope.

‘There he was described as “lazy” and “within the broad range of average intelligence”. All hope – and when we had the big meeting, the statement meeting to decide just what was wrong with my beautiful son, the borough’s educational psychologist was adamant that he didn’t have autism, that he was just suffering from Global Delay. How cruel is that kind of hope.
Delay
– I hung on to that word like a life preserver.
Delay
– the very word meant that he would catch up, that at some stage he would reach his destination like everyone else, there were just leaves on the line. The real Jonah would arrive, I just had to be patient. Ben didn’t agree. He wanted Autistic Spectrum Disorder on Jonah’s statement, he argued endlessly at that meeting for the inclusion of the diagnosis that we had already obtained, but in my head as he argued I was screaming “No, no, I want him to be delayed. Shut up, you quitter.”

‘Ben finally won. I hated him for it, as if the inclusion of ASD on his statement confined Jonah to life’s waiting room for ever. Ben had torn up his ticket.

‘My son was now officially autistic and transferred to Roysten Glen, a special school. The phrase made me feel sick. I’d seen those minibuses with children staring blankly out of the windows and I’d look away, embarrassed. Disability made me uncomfortable. I cried the first morning one of those buses arrived to pick Jonah up.

‘And yet still, in my mind, I thought,
he’s delayed, he’ll be at Roysten Glen for a year, they’ll sort him out and he’ll back at Northlea again
. But the minibus kept arriving day after day after day and, of course, he never went back.

‘Then the charlatans started to arrive with their programmes and promises and hefty invoices, like some gang of venal, money-grabbing evangelists. False hope is an industry like any other. That was five years ago. I have watched my son grow from a beautiful silent baby, smelling of poo and baby shampoo, to a beautiful silent boy on the verge of adolescence, smelling of poo and baby shampoo.

‘Towards the end of last year, the cogs finally slipped into place. Jonah is autistic, he will never speak. Being attacked, scratched and punched, having your home constantly smell of air freshener, acts as quite a truth serum. And after ten years of denial, resentment and quiet anger, I decided to fight for him and was told time and time again until I could take it no longer that really, he didn’t matter. Essentially what we are being told is that there is an epidemic ravaging our children, but let’s pretend that no treatment is available rather than spend the money on administering it.

‘Do any of you know how it feels to know your child will never call you Mummy?

‘I was never able to share any of this with Ben. Maybe that’s the biggest irony of Jonah’s condition. Not only has it robbed Jonah of the ability to talk and interact like a human is supposed to, but it has robbed those around him of the ability to admit their pain to each other.

‘I love my son. Some may doubt it, but I do. I always want to be in his life.

‘But I want others to take over the shame that I have felt for ten years and, mostly and simply, I want to watch my ten-year-old child wee on the toilet. Thank you for your time.’

I feel worthless. It’s shameful that I never asked the right questions and never accepted her pain could be anything like my own. I had heard the shouting, seen the crying, but it repelled me. I heard, but I didn’t listen; her words were just background noise, the shriek of seagulls over a waste dump, an incessant car alarm. Nothing else I say here now is going to add to Emma’s powerful portrait of her life – our lives – with Jonah, and it may appear as a pitiful exercise in one-upmanship.

‘Mr Jewell, would you like to add anything?’ the judge asks.

I rise, self-consciously. I feel foolish and fraudulent. I must do him justice. This wonderful, exhausting, terrifying, vulnerable, beautiful son of mine. I clear my throat.

‘Jonah does not have a voice, he cannot tell anyone what life truly feels like for him. So I must be his voice.’ I pull the leaves of paper from my inside pocket.

‘Apparently, my name is Jonah Jewell. I know this because they repeat the sounds when they’re looking at me and I’m off somewhere investigating. Light fascinates me a lot, especially when it splits into colours and when it reflects off a leaf close to my eye.

‘I don’t really know what time is, but when there is no light for me to investigate, I like to play with the water and bubbles and float in the warmth until he, Dad, tells me it’s time to get out. I don’t always get out when he asks, but he sits and waits for me and when I step into a towel, he cuddles me and dries me and squeezes me tight. He does this, I think, because he knows that I like it and I think he likes it too, and if he doesn’t do it, I feel anxious as if it is light again outside and everything is in the wrong order.

‘When I’m dry, he lets me run into my bedroom and jump on my bed and he puts my music on. I know it’s mine because it’s always the same and it means everything’s all right. Then he puts on my revolving fish-tank light and I lie down on my bed and watch the colours go round, which keeps me calm, and he takes the towel and dries my back. Sometimes – when I’m in the mood – he rubs my back and legs and bottom with his hand and sometimes it tickles and I laugh and then he laughs and I really like that. When I’ve had enough he gets a nappy and I lie on my back and push my bottom in the air so that he can slide it underneath me. Then he gets some cold white cream and smears it all around my willy and balls and the tops of my legs and around my bum which sometimes makes me laugh too. He does this, I know, because I wee and poo during the night and if he doesn’t use the cream I get very sore, but I don’t tell anyone. Then he puts my pyjamas on and I pull the duvet up to my chin and stare at my fish tank as he kisses me four times and turns the light off and I can finally disappear to wherever I want. This is my best time.

‘When I see the light again I wake up and meet him in the room with the water and the bubbles. My nappy is heavy and I want it off and it’s the first thing he does while filling up the water and bubbles again. Sometimes I wee and poo so much during the night that it leaks on to the bed which upsets him; and sometimes I push my hands into my nappy because it feels warm and squidgy and draw pictures on the walls with it and then he sometimes shouts at me. He cleans my bottom with lots and lots of wet tissues and puts me in the bath in the light. Then he dries me and dresses me quickly so I can go downstairs for Marmite toast and if there isn’t any Marmite I throw the plate across the kitchen because I have Marmite toast for breakfast. I jump up and down and pull at his hand because I have Marmite toast for breakfast and then I grab at his face and hair because I have Marmite toast for breakfast and I won’t let go so he opens the back door and forces me outside into the garden where I skip round and round screaming because I have Marmite toast for breakfast. Then the door opens and I run in and there is Marmite toast on the table so I sit and eat it because it’s what I have for breakfast and he sits on the floor with his head in his hands.

‘When I’ve finished my Marmite toast I pull grapes out of the fridge and eat them and roll them on the floor with my toes and squash them because I like the feeling of cold and stickiness and it’s part of my breakfast, I think, because he sits on the floor with his head in his hands. After breakfast, he makes me sit on the toilet while I twiddle with a leaf I found on the floor and then he takes me off and puts another nappy on me and as soon as it’s tight around me I feel it getting wet and warm. Then there is a ringing sound that means I’m going to the other place and he grabs my bag and opens the door and she is there smiling and takes my hand and we walk to the bus where I sit in my seat because it is always where I sit. There are others in other seats, but there are not two on a seat. One of them screams and it hurts my ears so I put my fingers in them.

‘I know how the bus moves and follow its turns all the way, but it turns the wrong way which makes me confused and anxious because that’s not the way the bus goes so I grab the hair of the girl in the seat in front and she cries out and grabs my hand and then he sits next to me and tries to pull my fingers apart but I don’t like being touched and the bus is still going the wrong way, but then it’s going the right way again, I can see the trees that the bus touches and I’m on the way to the other place again so I sit quietly and then get off the bus and go into my room which is my room because I go there during the light and it has a picture of me on the door.

‘I get upset there a lot when someone makes me do something I don’t want to do and then I smack my own head and bite my hand until I can feel it properly and when this happens someone carries me into a room by myself and leaves me there with a twiddly until I calm down. Sometimes they let me go outside, which is when I feel best because I can be by myself and find leaves and feathers and feel the wind on my face and this makes me laugh.

‘If I want something, I can’t just take it, I have to give someone a picture of the thing I want. But if I want it I just want it and I can see it so why can’t I just have it? Sometimes I get the right picture but sometimes I get a picture and I still don’t get what I want and I have to get another picture and I don’t understand why I don’t get what I want because I got a picture and then I bite myself again and if someone gets too close I grab them so they will get me what I want. Sometimes I just grab what I want and run away with it and then someone takes it off me and I pull their hair and dig my nails into them because I’m angry now and don’t know how to stop being angry because I don’t know what anger is or where it comes from and then sometimes water comes out of my eyes and I stop feeling angry and I feel better.

‘When I’m very, very hungry I sit at the table and things are put in front of me and if I don’t want them because they’re the wrong colour or shape, I throw them on the floor and eat what I like but I’m still hungry so take what I like from another plate because it’s what I like and I’m hungry and someone takes it away from me and I throw my plate and everything into the air and try to grab all the other food I like because I’m still hungry and when I’m hungry I want to eat so why can’t I eat when I’m hungry? Eating makes me happy. Someone puts a fork or spoon in my hand before I can eat but I’m very, very hungry then and want to eat and I can do it quicker with my fingers so I drop the fork or spoon and use my fingers because I’m hungry and this time I get to use my fingers which is good because it’s quicker than a fork or spoon and also I like the feel of the food.

‘When I’m only a little bit hungry people take me back to my room and make me do more things I don’t want to do so I smack my head and bite my hand again. Then I put on my coat, which means I’m going back to see him, and I get on the bus again and sit in my seat because it’s where I sit every day and the bus stops and another gets off and I want to get off because I get off when the bus stops because that’s where he is, but another gets off and I bite my hand and smack my head until I can feel it and then my legs are hot and wet, which feels nice, and then the bus stops and I get off because I get off when the bus stops and he is outside the bus and I run past him into the house and open the door where all the food is and take an apple and a slice of bread into the garden. Then he comes into the garden and takes my clothes off and wipes my legs and bottom with wet tissues and puts a nappy on me and warm soft trousers and kisses me on the head and the face and lets me run around the garden which I like best because it’s quiet and I can pick grass and leaves and flowers to twiddle with and I am on my own and I do this until he calls the name “Jonah” and then I know it is food because that’s the way it happens and I run inside and sit at the table and he gives me a plate of food that I like because I eat it all. Sometimes I still want to be in the garden so I grab my food with my hands and run outside with it which is okay because he doesn’t stop me, but when I want to be on the sofa and still want to eat and grab my food in my hands and run to the sofa, he shouts at me, but I’m hungry and want to sit on the sofa so that’s what I do.