Читать книгу Daniel Isn’t Talking - Marti Leimbach, Marti Leimbach - Страница 9

5

Do everything you can in life to avoid ever visiting a developmental paediatrician, particularly one in the NHS. It is not that they are wholly incompetent, nor that they will state flatly everything wrong with your baby, although either one of these may be the case. It is first that you must arrive at a car park lined with tall, rusting chain-link fences set into the untidy grounds by means of cement posts. You then put yourself through a gate that has a tricky lock placed high on a wall so that none of the children can escape, and pass through a series of anonymous hallways with cheerless chipping paint, linoleum floors that smell of disinfectant, posters about various sorts of conditions – dyslexia, Down’s syndrome, schizophrenia – until you enter playrooms full of badly damaged children. These children do not often smile, cannot easily speak, play not with each other but with objects that are not toys. And if you are there for the same reason as I am, today, you see in every one of these children the shadow of a person you love more than you can describe, and who is just three years old and has only this to look forward to in his life.

Daniel has begun to collect disc-shaped objects, which at first I thought was a good thing because it meant less attention to Thomas the Tank Engine. He has taken to balls and balloons and coins and draught pieces. Milk bottle tops and metal washers and clockfaces, the lids of mayonnaise jars and shining CDs. He holds as many of these objects as possible along with his Thomas as we walk through the nursery at the Frilman Centre, where we are to visit Dr Margaret Dodd about what is being called a ‘developmental delay’. Daniel keeps dropping a coin or a lid or a marble, which means we have to stop, retrieve the object, give it back to him and toddle along again, until he next drops something else. At this excruciatingly slow pace we make our way through the car park and the cement garden that leads on to the main building. By the time we reach the nursery, I have to pick him up in order that his revered objects do not get pilfered by the other children, who seem similarly disposed to carrying around useless items, or at least behaving very oddly toward their toys. One girl has a plastic Barbie she keeps hammering against a table, then flinging through the air, then hammering on to the table again. A boy with remarkably quick movements carries an armload of cars in a manner disturbingly similar to how Daniel is carrying his own assortment of cherished garbage.

Dr Dodd has Daniel’s notes in front of her. She is a woman hard to describe. Her face seems entirely without form, as though her features have receded with her advancing years, so that you find yourself regarding her in terms of what she is not. Not tall, not voluptuous, not thin, not short, not extremely old but definitely not young, and not terribly interested in Daniel. While she interviews Stephen and myself, another woman attempts to entertain Daniel with a table of toys that he is to name and make do things. Dr Dodd wears a white coat and a name tag. The name tag is the most definite thing about her. She speaks in the perfunctory manner of a dental hygienist and jots all our answers on to a form that she has clipped to a board on her knee.

When did he first sit up? Crawl? Walk? When did he first speak? When you say he has a few words, does he use them together or just as single words? Exactly how many words does he have? Does he have trouble with changes in routine? Does he ever engage in ‘pretend’ play? What does he eat? How often does he sleep? Does he seem particularly worried by loud noises? Does he spin? Does he perseverate, do the same thing over and over again?

The pitiful answers to these questions are that he was perfectly normal until sometime around nineteen months when we noticed he didn’t talk. We could remember him saying ‘ball’ which he applied to anything round, including Clementines and buttons. He then began to use the word ‘help’ but dropped the word ‘ball’. Then he didn’t say anything at all. He is ingenious at undoing locks, switching on televisions and unfastening car seats, but not so clever at playing with toys. We can’t get him past the lights-and-sounds plastic baby toys he had as a nine-month-old, and no, he doesn’t sleep at night. Or really, much at all. As for loud sounds, I am unable to use a public restroom because if somebody presses the hand dryer he goes screaming in terror. All loud sounds, from barking dogs to doorbells, send his hands flying to his ears, where they remain as he runs blindly away from the noise.

Because Stephen has an appointment later in the day, he is wearing a Jermyn Street suit, a thick silk tie. His shirt alone costs more than I would spend on a coat, and he has shaved carefully so that his face is perfect. As Dr Dodd continues with her questions and I put forward my sad replies, I watch as Stephen loses himself in the violence of what is happening here. His back slumps. His knees fan out, his big hands hanging between them. His tie coils on his right thigh. He is staring at the colourless linoleum tiles as the woman behind us tries uselessly once more to get Daniel to say the word ‘car’ and to keep him anywhere near the table of toys she has set out for him. Daniel keeps wheeling away from her as she grabs his arms, then he drops like a stone when she attempts to get him to stand at the toy table. All this is happening slightly out of our vision, but we hear it along with the battery of questions. While the commotion of Daniel’s attempt to escape from the woman continues, I am forced to report on the mental health of my family, that my father killed himself in the basement when I was four years old, that my mother went through a depression around the time of her cancer diagnosis. The only time Stephen looks up, in fact, is when the doctor asks if I am receiving any psychiatric help at present, to which I reply, firmly, that I am not.

‘Well, you might reconsider that,’ she says. ‘Your son is very likely autistic. Frankly, you may need help coming to terms with this. Let me see what the speech and language report is.’

I cannot bear to look at Stephen. All the times he has been annoyed with me for being so focused on our children, for providing every opportunity for their pleasure and comfort at the expense of his and my own, for busily singing nursery rhymes instead of going with him to films, building dollhouses out of cartons instead of arranging dinner parties, for failing to accompany him to his firm’s Christmas party, but instead sitting on the floor having picnics with Emily’s stuffed toys and playing peekaboo with Daniel. Then suddenly I have a thought that makes me feel sick to my stomach: when did Daniel stop playing peekaboo?

‘Stephen,’ I say urgently. ‘When did Daniel stop playing peekaboo?’

He shakes his head, doesn’t answer. He’s looking at Dr Dodd. She’s saying something but I cannot seem to focus. All I can think about is how so many of the mothers practised ‘controlled crying’ and found suitable nannies, while I gave myself wholly to every whim of my children. This method of child-rearing is a mistake according to those who think we should tame toddlers and thwart manipulating pre-schoolers, but I took pleasure in the sanguine, parasitic and entirely innocent fashion with which my children enveloped me. And yet, I am right now riddled with guilt because I cannot remember when Daniel stopped playing peekaboo. I feel, yes, that I’ve ruined him, this precious gift, my baby that within seconds of being born made me laugh out loud with the delight of seeing his squashed face, his dark eyes. Physically, he is a most perfect child. He has cupid lips and a shy half-smile, skin the colour of a ripe peach. He is lovely beyond imagination and I have failed him. I don’t know how I could have let this happen. Or how I can look up from the floor or ever raise my head or call him my own again, having let him down so badly. Baby, baby, please don’t be sick, I hear my own voice in my head. Little boy, come back to me.

‘He has frequent ear infections,’ says Stephen. Apparently, we are being asked questions again and I’ve missed my cue to speak. I feel my mouth is full of elastic bands – I cannot seem to make it work properly. I rely on Stephen, who seems all at once to be solid and defined while I float up to the ceiling, watching us all as though from a great distance. Tell them about his fevers, Stephen, I think. Tell them how often he is unwell. ‘And he gets high temperatures and swollen glands around the neck,’ adds Stephen. And his stomach, tell them, please darling. Tell the doctor how many nappies we get through each day, then about the constipation. Four days and nothing, sometimes five. ‘He’s got problems with his bowels,’ says Stephen.

Dr Dodd adds these facts to the file. Then she has a quick word with her colleague, who has finished her evaluation of Daniel’s speech and language. He is being returned to me, my boy, and is clasping his disc-shaped objects, his Thomas and his mother all at once. I clutch him to me – too hard – and he squirms away, then settles with his back on my chest, using me as a chair. The report on his speech is that he has almost none. Functionally, he is less than six months old. I hold him and all his collection carefully in my arms, my head pounding, my heart fluttering inside my chest, every breath a heavy weight inside me.

‘Well, thank you very much,’ I hear Stephen saying, then his hand on my arm lifting. I leave the chair, walk the corridor, wait for the many locks and codes to be sorted so we can get back to the car. I am unsteady as though I’ve been drinking. The walls come at me all at once; I’m not ready for the kerb. Thank God it is Stephen driving because I would not be able to. My nerves are threadbare like antique cloth. My hands are cold and yet I am sweating. As we travel home it is as though we are driving through a strange land; the shops and signs and banks of houses feel as though they are designed for people other than ourselves, as though we don’t belong. When we stop at a light it feels too sudden. The cars beside us and in front of us appear too close. On the motorway I would swear we are speeding out of control, close to crashing, yet when I check the dashboard it reports that the car is well within the speed limit. Stephen drives carefully, both hands on the steering wheel, his eyes forward and alert. I am unable to sit still. I squirm and feel my breath coming unevenly. My leg is shaking. I pull my knee up to my chin and hold it. I keep checking Daniel, who is in the back seat staring out the window, moving his train’s wheels over his lower lip.

We have a favourite nursery rhyme CD and usually I put it on, singing the songs along with Emily. Without her here the silence is palpable, dire. I realise all at once that it has been Emily’s exuberance, in part, that has shielded me from the knowledge of Daniel’s condition. She always talks enough for two; her interests keep me busy answering questions, telling stories. It was easy to imagine that Daniel was part of all that, but now I see that he might not have been, that I have missed the obvious. He does not seem anxious for the CD to play; he does not seem to notice his father and me in the car. He’s always been like this – of course he has – a diagnosis, a label such as autism, does not change the child. And yet I feel that a change has taken place. I cannot help feeling as though I started the journey this morning with my beloved little boy and am returning with a slightly alien, uneducable time bomb.

Dr Dodd explained to us that Daniel will improve in some ways, but in others he will deteriorate and become noticeably more ‘autistic’, whatever that means. We were urged to understand that autism is genetic and that a history of depression on both sides of the family (Stephen’s father, Bernard, is also given to depression) is proof that this is evident in Daniel’s case. Indeed, the consultant seemed very satisfied when she heard my father had killed himself. The suicide absolutely decided it for her – Daniel’s predicament was clearly the result of unfortunate genetic coding. The fact that there was no history of autism itself was irrelevant to her, and the idea that my son might have some immediate treatable medical issues was never even acknowledged. If I could have willed my mouth to speak, I would have emphasised that he was terrifically unwell within weeks of receiving his MMR vaccination and that the photographs of him from that day forward plainly show him in marked decline.

It wouldn’t have mattered, of course. She has a whole slew of reports about the safety of the MMR, and anyway, didn’t my father put a gun in his mouth and shoot while his children slept upstairs?

Yes, I might have replied, if I had dared to reply, if I could have gotten words out, if I wasn’t entirely in shock. But my father could laugh and joke, put us on his shoulders and dance. He had a wit that could lay someone out if they tangled with him and a smile that swept a room. He was not dysfunctional, not unable to read emotions, and certainly not autistic. He was forty-eight with an inoperable tumour that made him feel his head was going to explode. Though I don’t pretend to know the details of what happened in that basement, I can assure you it wasn’t exactly his life he was aiming for with that gun.

* * *

At home I find Emily with Veena, sitting in front of the fireplace enacting the scene from Dumbo in which the ringmaster, the fierce monkey with the blue-painted coat and hat, forces the poor elephant to jump from a great height into a pail of oatmeal. We made Dumbo from Febo clay and baked him in an oven, paying special attention to his large ears so that they did not crumble. He has enormous eyes and an innocent expression. It isn’t just those ears which set him apart from the others, which are the sort of plastic animal you buy at Early Learning Centre and are very correctly moulded, though far less beguiling until Emily painted circus blankets on them all.

‘Where is your husband?’ Veena asks. Remarkably, after the announcement of Daniel’s diagnosis, Stephen dropped us back at the house and went on to work. I have a meeting, he said. Try not to worry, he said. Take a pill if you have to, and let Veena look after the children.

In this numbed, surreal post-diagnosis state, I could think of no objection. Except to the pills. I fed the toilet with them, then filled the vial with aspirin.

Veena says, ‘I believe British imperialism to be a kind of genetic coding. Your daughter requests that I take her to India so she can ride an elephant like a royal person.’ She shakes her head, smiles. She smells of orange tea and has her hair braided down her back in a single, weighty rope.

‘It’s the Dumbo influence,’ I tell her, ‘not the British.’

‘Same thing,’ she says, tucking a lock of loose hair behind her ear.

‘No, Dumbo,’ I say. ‘The elephant.’

‘Dumbo the elephant? What are you talking about? The child says she needs a palace.’

We give the children lunch and Veena sets about sucking the dust from the drapes with the long hose of the vacuum cleaner. The whole of our downstairs is just one big room, so I follow her with her Hoover, keeping an eye on Daniel to see that he eats the food and doesn’t just roll it between his fingers. Over the noise I try to explain to Veena that Daniel is autistic, and that he is going to get worse unless we do something, but we don’t know what to do. Even as I say this it doesn’t seem real to me. It’s like being in one of those movies where they’ve discovered the world is going to end in ten days unless a solution is found. But there is no solution.

‘What a silly you are,’ she says, aiming the hose. ‘Your boy is fine. It is only that he is a male and destined to grow up to be a male.’

‘No, no, nooo,’ I say. ‘As bad as that sounds to you – you, in particular, Veena – this is actually very much worse.’ I have a need to push the information at her, to press it into her and force her to take hold of it. It’s a feeling that will not go away and that, I believe, will visit me often and with everyone, guaranteeing the end of many of my friendships. Whispering so that Emily and Daniel don’t hear, I say, ‘He’s autistic. That’s what they’ve said. He will not grow up like a normal child. It is the worst thing that can possibly happen!’

She shakes her head. ‘Where I come from,’ she says, ‘they burn women.’

‘Veena,’ I say, begging with my voice.

‘Eat something before you die,’ she tells me.

But I cannot eat. I cannot sip the tea or even the water that Veena sets before me. It is a condition of my existence now that the simple, keep-alive activities of eating and drinking and sleeping are beyond me. I sit with my cheek against the wood of our dining table, my hands hanging down, my eyes half open, staring.

Veena watches me for a moment, then shuts off the Hoover and comes to me, taking my hand. What I notice right away is how dry and small her hand is in mine. And how her eyes are so deep a brown I have to search for the pupils. And how sad she looks. I realise now that this is my fault; that I have made her sad by telling her what has happened. She looks across the room at Daniel, at Emily, and I register at once that she is thinking how it is worse for them. With a single confirmed diagnosis their whole lives are different. And then I see something else in her face. An awareness. A resolve. She lets go of my fingers and sits up straight, then says to me steadily, ‘I am a philosophy student and an Indian woman. This makes me a very dark person in many ways. Each day I see around me a world falling about like a stumbling drunk. They hold prisoners of Muslims and say they are not racists. They let the white skinheads terrorise the blacks and say they are not racists. I have come to this country as an escape from my own, worse country, where people are still considered untouchables and where it is known that boys are kidnapped and castrated and made to live as eunuchs. I am sorry, dear Melanie, but you are a white woman living in a white paradise. This is not the worst thing that can happen.’

‘Untouchables?’ I say.

‘Gandhi tried to rename them Children of God, but they call themselves the Dalit, which means depressed.’

‘Veena, I’m depressed.’

She nods. She has heavy glasses that slide down her boxy little nose. She breathes in deeply, then lets the breath go all at once. ‘I understand,’ she says. ‘But right now he lives, and so do you.’

Strangely, Veena’s words are a comfort to me.