Andy nods, smiles. He can help, he says. But he only has so much time.
Now he shows me how to get Daniel to use language while doing a puzzle. The theme of the puzzle is, of course, Thomas the Tank Engine. It’s a wooden one, from the Early Learning Centre, with pull-out pieces. Daniel has the empty wooden tray with the missing pieces. Andy has figures of all the trains, plus the Fat Controller. Daniel has to make a sound like ‘Thom’ to get Thomas, a ‘Puh’ sound to get Percy, an ‘Eh’ to get Edward, etc. Then I have to put my hand over his hand to help guide the pieces into position. It doesn’t take him long to figure out the idea, and I am thrilled because I’ve never gotten him to complete a puzzle before. He usually just tips the puzzle over and watches the pieces fall, then walks over them as though they weren’t there, or he’s forgotten they are there. What has changed is that we direct every movement, loudly praising him for each effort. And when he completes the entire puzzle, out comes a battery-operated Thomas with a headlamp, which goes like blazes across the wooden floor. This battery-powered version only comes out at the end of the puzzle – it’s a ‘reinforcer’, which means that it is only used during therapy sessions. Daniel loves it. He grins with anticipation throughout the whole process of making the puzzle.
‘Five minutes every two hours until I see you next,’ Andy tells me. ‘Before he gets bored with that puzzle, get him a new puzzle. Keep him talking, every day, all the time.’
‘This will work?’ I ask hesitantly.
‘This will work,’ Andy says. And I believe him.
Before he leaves he tells me, ‘If you see Daniel stimming, distract him. I don’t care what you are doing – hanging the laundry, making the tea – stop what you are doing and redirect him so he doesn’t just sit there and stim.’
A ‘stim’ is whatever someone is doing to distract themselves. Jumping up and down, nodding the head back and forth, or humming continually. These are stims you see in autistic people. But we all have stims, of course. I bite the ends of pens, for example.
‘Nose-picking, tapping, biting fingernails, hair-twirling, licking your lips. And eating pens like you’re doing now,’ Andy explains. ‘And that’s my pen, by the way.’
I whip the pen out of my mouth, holding it toward Andy. But I see that I’ve gnawed off the blue cap, put my teeth marks on the transluscent plastic casing.
‘Put it back in your mouth, Melanie,’ says Andy, waving away the slobbered-on pen. ‘I don’t want it!’
He makes me laugh and he fixes my kid. In his rucksack he carries clipboards and developmental charts, note cards and dozens of small gadgets: a top that spins and throws sparks, a wind-up frog that hops across tables, a speaking turtle with a string-pull, lots and lots of things that light up or buzz, plus a great number of trains.
He promises Daniel will enlarge his interest in trains and, just as predicted, a few weeks later I find Daniel latched on to more than just Thomas. He’s gotten Annie and Clarabel out of the box on his own, connected them on to the back of Thomas, and is pushing them along the wooden floor, I don’t care what the speech therapist said about Andy having no professional qualifications, he seems to understand how to make Daniel more and more like a typical child. Daniel cries less these days; he has things to do other than haul around disc-shaped objects. The discs are useful for teaching Daniel to learn the concept of big and small; a coin next to the lid of a mayonnaise jar. When he gets it right Andy showers him with pieces of round, coloured confetti he’s made with a hole-punch. For Daniel it is ecstasy to have a cascade of these circles pouring over him. If he could, he’d wade in a river of geometric shapes.
The Hoover fetched ninety pounds and I really don’t miss the carpet at all.
14
Cath says she wants to see the children, wants to see me. She meets me at the school gate and we find her car. Strapping Emily and Daniel into the back, I feel the thrill of an adventure. To my delight, she insists we go to the zoo.
‘My treat,’ she says, which is a good thing. A visit to the zoo for the three of us costs the same as one hour of Andy’s time or half a week of groceries or the blazer for Emily’s school uniform come autumn. Well, I don’t have to worry about the blazer – Stephen will pay for that, I’m sure – but he’s made it very clear he thinks Andy O’Connor costs too much and that he doesn’t believe anyone should be paid that much for playing with a child. But then, he’s never seen first-hand what Andy can get out of Daniel, and he doesn’t understand that there’s a lot more to it than playing.
‘Every Easter holiday my parents took us to the zoo,’ says Cath. ‘It was the same routine each year. Saturday was zoo day, Sunday was Easter. I cannot imagine that London Zoo exists in hot weather like this. I always associate it with Lent. Whenever I hear “When I Survey the Wondrous Cross”, the image of barking seals comes into my mind.’
For Emily’s sake we are going straight to the elephants, marching along the warm, white pavement at a brisk pace that has Cath puffing. It amuses me she thinks today is hot. In Virginia even early in spring the heat is a suffocating and invisible spectre that you have to walk through. I can remember summer days when it felt exactly as though steaming wool was being held over your face as you breathed, the sun stabbing at your skull so you felt it was too much trouble to go anywhere. Certainly the pace with which we arrive at the elephants would be impossible during a Virginia summer. You’d stay indoors with the air conditioning and iced tea – a drink you simply cannot get hold of here in Britain – battling to keep the insects out of the house. Silverfish crawled up through the drains, wasps appeared from nowhere. We lived in a clapboard house surrounded by toads that buried in the earth to stay cool, snakes that without any particular worry spread themselves on the warm rocks in the evening. By dusk the mosquitoes had you slapping your skin, and I wonder sometimes if it was all the poisons I sprayed on my body to repel them that made me give birth to a child with autism. That or the pesticides they dumped into neighbouring fields, dispersed by single-engine planes that flew low like geese and made you hunch your shoulders and cringe as they sped over the land. As a child I waded in streams, drank from any flowing water I found. My brother and I traversed whole woodlands in flip-flops and baseball caps, picking wild blueberries off the vines, wild strawberries from under their cheerful green leaves. Wash them? We didn’t think about such things. We fished and didn’t wonder about the state of the water. Popped raspberries we stole from next door into our mouths without a thought about how they grew so beautifully in a land infested with every kind of pest.
‘I want you to know that I never liked Penelope,’ says Cath. We are standing outside the elephant enclosure, watching Emily as she delights in a baby elephant, tiny compared with his mother, about the size of a London taxi and covered in waxy-looking grey skin. Daniel is less interested, but is definitely looking in the same general direction, even if he does gnaw at the collar of his shirt, making a damp patch the shape of a crescent moon. I spent a few minutes on my knees beside him, helping him point and say, ‘Big elephant! Little elephant!’ but I couldn’t really conduct a therapy session and speak to Cath at the same time.
‘She’s very pleased with herself, a little spoilt,’ Cath says now. ‘Very attractive in her own way – don’t get me wrong – but I was relieved he didn’t marry her. And I was always quite proud to have you as a sister-in-law.’
Emily moves along the enclosure. We trail, not too close. We don’t want her to hear.
‘Why are you speaking in the past tense?’ I say. ‘I’m still your sister-in-law. Or is there something you know that I don’t know?’
Cath looks at me, then away.
‘Oh fuck, Cath, please tell me.’
Later we go to the sea lion show, sitting among the crowd that gathers on marine-green seats, listening to a lady with a microphone strapped to her head and a pouch of fish lashed to her belt. In front of us is a pool of unsteady water, bobbing like a tray of shaken jelly. Daniel would like to go swimm
ing in it; I have his shirt in my fist, supporting him as he leans forward, his arms flailing as though he might fly if he could only get up enough speed.
Cath says, ‘I agree with you that he’s still in shock – there’s something about the abruptness with which he left you that makes no sense at all He may come to his senses. But I know Penelope. She’s got some sort of plan. I’m only allowed to use his mobile number or else she goes spare.’
‘I don’t like Penelope either,’ I say. ‘But she wasn’t the one who stood before God and man and told the world she’d be my husband. That was Stephen.’
‘Like I say, I don’t really understand him,’ says Cath.
Our conversation is conducted in whispers and close, small movements. Around us are shouts of surprise at the sea lions, who can hop backwards in the tremulous water, sail through hoops with their backs arched, catch beach balls with their noses.
‘This is Salt,’ calls the lady with the microphone. She tosses a silvery fish in the direction of a sleek grey female sea lion, ploughing through the pool.
I have Daniel up close against me, comforting him when the crowd makes a big noise. He hates sudden loud sounds; puts his hands over his ears and howls when Salt tosses a ball back and forth with her trainer, causing the audience to cheer. But he is watching, definitely, and that is a good thing. Emily, springing up and down in her seat, could be attached to a pneumatic drill she bounces so fast, laughing and pointing all the while. Everything is going great until Daniel gets splashed. Suddenly, as though he’s been shot by a gun, he howls and twists against me, scrambling to get away, and now he is running toward the back of the audience, his knees pointed out, his arms above his head. And I am running after him. I don’t allow myself to think of what this might be like when he is older, taller than me, faster. I will not be one of those people who have to keep their grown autistic child fastened to their wrist by means of a coiled rope, a kind of handcuff, something I saw earlier at the owl enclosure as a team of staff from one or another special school moved reluctant autistic teenagers from one exhibit to the next, much as one might move recalcitrant cattle.
The tiger is pacing back and forth, back and forth. His stripes mirror the metal bars of his enclosure. His eyes seem to focus on everything and nothing. It is a look that turns inward, attending to some biological need: to hunt, to mate, to shit. I’ve seen this same expression in my son, a fact that visits me with alarm. To watch the tiger, feeling as familiar as I do with his state of internal concern, requires a kind of self-control that does violence to my spirit. I will myself to remain, still and standing.
Emily is enchanted, quietly leaning on my legs. The big cat is only a few feet from us. You can see his loose skin, his dense pelt, the yellow of his canines as he pants. Daniel, standing with us, ignores the tiger altogether. Six hundred pounds of exotic animal straight out of the Indian jungle apparently does nothing for him. Instead, he focuses on a sparrow that is taking a dust bath in the tiger’s enclosure. ‘Bird,’ I tell him. And after some prompting he says, ‘Burr.’ This word will be added to my book when we get home. And we will practise it along with every other word, purchase models of birds and draw pictures of birds, spread our arms and pretend to fly like birds. I will make wings from card, tie string so that we can wear them on our backs like angels. At the pond in Regent’s Park we will point at seagulls and imitate their swoops and dives.
This I do for every word he picks up. And I am determined to do it until he has full use of the English language.
Cath says, ‘I don’t think my parents helped matters much. They’re very powerful people, you know. Mother looks innocent enough, carrying in the jam jars for church sales, always making time to look after David’s and Tricia’s boys, but whatever Dad wanted always had to go. She would defend his wishes against her own children a hundred per cent. That is what she thought one did as a mother, presenting a united front at all times. Stephen cried himself to sleep all the first term of boarding school, at the age of eight. Back then they didn’t allow parents to speak to the boys for the entire first month, thinking it would only contribute to homesickness. There was none of this email or use of a dormitory payphone. When Stephen came home at exeat he begged Mum and Dad not to send him back – literally, begged them on his knees, crying. But Dad would hear none of it.’
This information pains me. With her upper-class vowels and her Liberty print shirt-dress, her delicate Russell & Bromley pumps with little brass snaffles at each toe, Cath is nonetheless a very unguarded individual, which is why I’ve always liked her so much. I know she is telling me the truth. And Stephen is still someone I love and wish for. Our son looks exactly like him, with his dark eyes and broad cheeks, and it tears at something inside me to imagine such a boy on his knees, at the mercy of parents who think there is only one way to raise a child and that is to send him away.
‘It must be awful for you to be continually scrutinised over everything you do and have done for Daniel,’ whispers Cath. Emily is asleep on the sofa. Daniel is asleep in my arms. The sun and all the walking has worn them out. Cath and I are recovering with large glasses of lemonade, happy with our zoo day.
‘I’ve had some people come around trying to get me to enrol him in a special school for moderate learning disabilities,’ I say now, remembering a horrible pair who came by with their clipboards and their raincoats, looking more like spies than anybody who should be near children. They regarded Daniel as one might a wild animal, admiring him from a safe distance as we did the tiger who paced his enclosure. I try not to think how Daniel sometimes paces our back garden as I say, ‘I told them to get lost, and yes, they probably thought I wasn’t doing right by Daniel. But they don’t see the progress I see. They think he’s in terrible shape because he only knows fifty or sixty words. But I see fifty words as fifty times what he had before we started.’
Cath says, ‘I’ve watched you with him, with both of your children. Don’t let people upset you or condemn you or say it was your fault. There are more and more kids with autism these days, and I don’t know why.’
‘I don’t think it is my fault,’ I tell her. I don’t tell her I am haunted by Bettelheim, who attacks me in my dreams, that I’m routinely hurt by the mothers at Emily’s school gate, that the nights are the worst, just waiting on my own. ‘And I do think his vaccinations were tough on him, each one, not just the MMR.’
‘Every day I authorise vaccinations,’ says Cath.
‘I’m not blaming you,’ I say. I’ve begun to understand that once you are a mother there is just no safe place to cast a vote. Everything you do, the consequences of every action, you will take to the grave. And there is no point in assigning blame.
Cath says, ‘And I’m telling you not to let anyone put you down. Because they will, you know. I had a woman in my surgery yesterday concerned because her husband, who does contracts for the council, had to have a wall cleaned and repainted for a flat in Maida Vale. It seems the teenage boy, who is autistic, smears his faeces at night. The woman went on and on about how the boy should be locked up, how her husband shouldn’t have to do this sort of work, how it was dangerous for his health, how it’s the parents that she blames.’
‘What did you say to her?’ I ask. I have a lump in my chest as though I’ve swallowed a light bulb, like the glass is shattering and sliding toward my heart.
‘I handed her the box of latex disposable gloves I have on my desk,’ says Cath, looking at me with a conspiratorial half-smile, ‘and I told her, “This is the medical answer to your problem. Doctors use these every day.”’
I laugh with her, hug her. ‘I’ll be your friend whatever,’ she says to me.
I nod, knowing she cannot bring herself to tell me Stephen is planning a divorce.
15
Here is a photograph of Daniel, sitting on the steps with his sister. In it he is smiling broadly, eyes to the camera. His face is full of the radiant, expectant joy of any normal child. I often look at this picture and
wonder what was going right that day – what food he’d eaten or not eaten, what chemical change in his brain made that such a good day. At a lecture I attended, a doctor who has taken an interest in the biology of autism explained that food seems to affect autistic kids. Ε numbers, sugar, aspartame, corn, monosodium glutamate, anything with a lot of colouring in it even if it is natural, even certain fruits. The worst thing is gluten and milk, which is all Daniel wants to eat. And gluten appears to be in everything: Carr’s water biscuits, McVitie’s digestives, not to mention all the Italian bread that flows through our house. I can understand that these are not essential items of nutrition – and we can live without gluten – but it feels completely wrong to me not to let Daniel have his milk. Having spent so long now getting him on to a cup, I now find all I can put in the cup is water or watered-down juice. He wants my breasts, lifts my shirt, his mouth open. I move him away, gesturing to the cup. ‘Gul,’ he says. It’s his word for milk. And then, plucking the word from the air, he says, ‘Milk,’ and points at my chest.
But I have to direct him to the cup.
The other idea this doctor gave is to allow raw goat’s milk and give Daniel a special enzyme to help him digest it. The raw goat’s milk is from Wales. I have it brought by courier every week, costing me over twenty pounds. Twenty pounds a week seems an awful lot for milk. Twenty pounds a week is also about the same amount Daniel gets from the government for being a disabled child. So the government is paying for Daniel’s milk. That’s their one big effort for my little boy.
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