Daniel Isn't Talking (14 page)

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 swimming 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.

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.

As for the enzymes, I have to plump for them, and they aren't a giveaway, I can tell you.

At night, because I am lonely and because Daniel wakes up so often that I become unable to go back to sleep myself, I ring my brother.

‘Why don't you watch TV?' he says. ‘Don't you have cable? Cable, twenty-four-hour supermarkets, chat rooms, casinos, airport lounges, all these things were made for people like you.'

‘But what I actually
want
to do is steep,' I tell him.

‘OΚ,' he says, like that's no problem. ‘Valium, Ativan, Tranxene, Xanax, Buspirone. Just get it off the Internet. God knows, you have
time
.'

His other suggestion is that I speed-date. ‘Isn't that the latest craze in Britain?' he says. ‘Man, that's what I'd do if I were in your shoes.'

I try to explain to him that I am married, that the last
thing I want is a three-minute date, and there is nothing whatsoever attractive to me in this notion.

He makes a sound,
Mmmmmm
, as though what I've just told him is very, very wrong. ‘Mmm,' he says. ‘All what you just said there, don't mention it on the date. Just smile and tell them you like sex. That's the way to do it.'

Another phone call with Larry. It is five in the morning. The sun is an orange lollipop hanging low behind shadowed buildings. Larry's voice on the phone is wide awake, however. It's eleven at night his time.

‘Wait a second! I don't believe it!' he is saying.

‘Well, it's true!' I tell him.

‘But what you are saying is just not
possible
in the twenty-first century! You are telling me that the best-loved soap in that country where you live is on the
radio
?' he says.

‘
The Archers
,' I tell him, exhaling a breath of smoke against the receiver. I've copped a cigarette Andy left behind by accident. Out in the garden, of course, in the seat by the belching dead water of our pond.

‘On the
radio
?' says my brother, flabbergasted. ‘During the
day
?'

When things are going well I count up Daniel's words. He has over a hundred now and is beginning to put them together. Having not been able to get a word out of him for three years I now find that if I am inventive enough, he will try for me every time. He likes it, this talking game. I teach him to play ball, rewarding him for every effort he makes to catch or throw.

‘Nice catch,' I say, standing an arm's length from him.

When I tried this months ago, Daniel just let the ball hit him in the face or body, wherever it might land. When I gave him the ball he held it to his eye, squinting. Or he cast it up, never looking where it went, then walked away. Now he can catch. Now he makes some kind of effort to toss it my way. Well, most days he makes an effort.

We wheel down the pavement on his tricycle, shout ‘Duck!' at the mallards that crowd Regent's Park. I hold the swing seat, pressing my weight against the tension of the heavy chains, and say, ‘Ready?'

‘Ready, steady, GO!' says Daniel, and I release him so he flies.

On a bad day I feel like crap, looking for a switch that I can flip or something that will remove me from this life. When Daniel isn't talking or looking at anything, and none of the people I want to talk to return my messages. Everything is bad and my shoes don't fit. At the grocery store I am injuring myself by staring at the mothers with boys Daniel's age – boys who shoot sentences from their young mouths effortlessly, holding sophisticated negotiations with their mothers over such matters as how much chocolate they can buy. They seem to shine, these children. They seem covered in some sort of gloss that both protects them and attracts light. Meanwhile, Daniel slouches in the seat of the shopping trolley, staring blankly or pushing his tongue around and around the edges of his mouth until he forms a bright pink oval of skin beneath his lower lip. He might point and call out a word, but mostly he will remain silent until I speak to him, prodding him into conversation. It is as though he is one of those old-fashioned cars you have to crank into working. However, once he's talking he can
say quite a bit. And these days he doesn't need to have a pack of chocolate biscuits just to stay seated. The strategy I learned from Andy was to feed him a huge meal before we went shopping, bring along chocolate biscuits that are gluten-free, and keep rewarding him for sitting in the trolley. It works – though it didn't the first time. The first time Daniel screamed so much that he made himself sick, then tried running away. Andy stopped him, so Daniel threw himself down on the floor, writhing and crying. All of this sent me into agony, but Andy just worked through it.

‘We have the whole morning,' he reassured me, his voice measured, controlled. Somehow he even managed to grin. ‘Forget everyone in the shop. It's just you and me and Daniel. Stay calm and we'll make it.'

I stayed calm. Daniel eventually slowed down his crying. Andy picked him up and walked him along the aisle by putting his feet under Daniel's feet and half carrying him, talking with him all the while. I put jam, eggs, a loaf of bread in the trolley, hardly noticing, as I watched Andy and Daniel ahead of me.

‘Fantastic walking!' Andy said, even though it was Andy who was doing all the work. ‘Keep going, mate!'

When Daniel began to walk himself, Andy turned his head and winked at me. Then he gave Daniel a biscuit. We managed five minutes like that, then left the shop without buying a thing.

‘But you can't just leave a trolley with stuff in it like that!' I said, as we slipped out the door.

Andy laughed, thumped my arm. ‘Oh, I think we can,' he said. He got out Daniel's favourite battery-operated Thomas train. ‘Every day, maybe twice a day, until I see you next.'

‘So when will I see you next?' I asked.

Now Daniel has new requests, more sophisticated, not to mention articulated.

‘More trains,' he says, and it is a command, not a question.

But there is the increasing problem of my poverty. I'm wishing the cottage would sell – and fast – because Stephen thinks I am irresponsible with money. All these doctors' bills, homeopath bills, kinesiologist bills. OK, they might have been a waste of time, but how did I know before I tried? And certainly what we pay Andy is not a waste. He is as necessary as water, the heartbeat of Daniel's recovery. But Stephen won't give me any cash at all and is warning me about the credit card.

I'm running out of things to put through the free ads, through
Loot
and AdTrader, to pin up with a colourful ‘FOR SALE' at the newsagents. And there are specialists I mean to see with Daniel.

Autism turns out to be an expensive condition. That is, if you treat it.

When Stephen finds out that I have taken up the carpets, sold his favourite chair, sold the antique maritime clock we once had on the mantel above the fireplace, the Persian rug we had beneath our glass coffee table (also gone), not to mention his collection of
Wisden Cricketers' Almanacks
, he looks like a fire that has been stoked and fed until it gathers its fury and comes at you, hissing. I think he may hit me. I've never stood in front of a person who is going to hit me, and I find it requires a mixture of courage, foolishness and quiet denial Not unlike what it takes to try to help your autistic child, I note, stepping back as Stephen shouts.

‘Well, this is what I get for marrying a crazy person!' His teeth flash as he yells. There's a scowl line like a dark canyon, separating his eyes. I see the veins in his neck, in his forehead. He seems to grow in height and breadth, all at once too big for this near empty room, which he moves through like a giant, swatting the air.

Strangely, selling all our possessions has little effect on me at all. It's not that our things held no value for me, only that value is relative. I will trade all these possessions for a few new words from Daniel. I am in a different market than the rest of the world.

‘You can shout all you want. It doesn't touch me,' I tell Stephen.

He warns me that if I keep destroying our children's home he will expect them to come and stay with him, even though he has only a single large room with a kitchenette and even though Penelope is there.

And now it is my turn to explode.

‘If you are issuing threats, I might remind you they have American passports,' I tell him. ‘And that no judge in the land will give the father permission to extract his children from their mother to go live with his girlfriend!'

‘Unless she has a psychiatric history,' he says. He's so quick, Stephen. He didn't go to business school without learning how to wield power. Didn't get whizzed through the ranks of management for nothing.

‘There are no records,' I tell him. ‘In fact, it is on record that I am
not
receiving psychiatric help. At Daniel's assessment the paediatrician
wrote it down
!'

‘I have financial records,' counters Stephen.

‘Would you listen to yourself, you fuck?' I say.

‘Would you stop swearing?'

‘Would you get out of my fucking house?'

Which he does, very quickly, without saying goodbye to the children who are in the garden now. Emily is there with her bucket and spade, sitting in the green plastic sandbox shaped as a frog. She is looking in the direction of the house, frowning beneath her straw sunhat, wondering no doubt what is going on inside, why her parents argue and never kiss any more, never make up.

On Fridays, to the last minute he is here, Andy works like a plough horse in a wet field. In his torn jeans, his chestnut hair all askew, he holds up a pad and writes furiously with a marker. He is all energy, bounding through the house chasing Daniel, who squeals and giggles and runs, his head turned to watch as Andy trails after him. Andy pretends to be a cruel diesel truck bent on attacking the innocent engine, Daniel, as he travels his branch line. With a cape and hat he is a conjuror of magic, able to make Daniel invisible for ever! Grabbing him round the middle, he hauls Daniel gently to the ground, tickling him until Daniel says, in the shattering high notes of a choirboy, ‘Let go!'

And now they are off again.

In the middle of all this the phone rings. I am laughing as I answer it. I have so loved watching Daniel charging around the house with Andy that I've forgotten everything else for the moment.

But the phone call reminds me. It is Stephen. ‘We shouldn't be arguing right now,' he says flatly.

Andy is standing in the living room with Stephen. He is wearing a Live 8 T-shirt and what my brother would call ‘pickle' trousers – that is, army issue. Stephen, in a summer suit, is wilting in the heat. He takes off his jacket, rolls
up his sleeves. He has left the office early for this, wants to learn what Andy does that works so well. I am very grateful.

‘You have to make it fun, the zanier the better,' says Andy. ‘So you hold the chocolate. When you call “Daniel!”, he has to call “Daddy!”'

I can hardly believe we've gotten this far, to have Stephen actually taking instruction, but we have. It's a wonderful day, a day I ought to celebrate, except Stephen is again in a rotten mood. He's mad because I will not go to see the special school he has made an appointment with. I will not countenance putting Daniel in school at all. Any school. It's not that I think special schools are so terrible, only that we are busy with him now at home and he is learning so much. Eventually – if it is at all possible – I'd like Daniel to go to regular school, perhaps with an aide, someone there to help him. For some reason Stephen disagrees. And yet here he is, so perhaps there is hope.

‘So remember,' says Andy, ‘make it all seem like great fun. You hold the chocolate. When you call “Daniel!”, he has to call “Daddy!”'

Stephen looks in Daniel's direction. ‘Daniel,' he says. Then he coughs.