Daniel Isn't Talking (5 page)

We were in his muddy blue Volkswagen driving out to South Wales. There was a particular beach we liked that made only a pathetic nod toward tourism and was more or less vacant most of the year. I looked at his profile as he sang along with a Van Morrison song, his hand on my knee, and I realised I loved him dearly, the way you do a great friend or a member of your family. He had a knack for making me feel good, bringing me tea in bed and reading me jokes from a book just like my brother used to do when we were kids. He was an expert camper and knew, for example, how to pitch a tent in the wind and cook an entire breakfast using only a tiny gas cylinder. One day we
saw a rosewood vanity box in the market on Portobello Road. He brought it home and made it into a record player, that old-fashioned relic of a machine, with speakers so small we could tuck them on the window sill behind the bed. Even now, when we make love, he moves over me silently and thoroughly and selflessly, kissing me afterward, his hands in my hair.

‘And that is
how
often each week?' asks my shrink, his notepad on his thigh, his mechanical pencil hovering above.

‘That isn't the problem either,' I tell him.

He sighs, shakes his head. Slaps his pen on the clipboard.

But this session, session number two zillion, we hit on it.

‘What am I scared of?' I say, whimpering. One hour, sixty-five pounds, thirty minutes of London traffic each way, a splitting headache, no workable drugs, and all I've done is cry. ‘What am I
scared
of?'

He nods. Says nothing. Fixes his lips into a serious expression. Another time, not now, I might wonder what Jacob thinks about during the session when all that happens is a lot of crying. But I'm not thinking about Jacob.

‘There's something wrong with my baby,' I say, sputtering through the sentence, all snot and tears, my ears ringing, a stabbing pain in my throat.

‘What is wrong with him?' asks Jacob slowly.

I feel my child is slipping away from me. It is as though he's lost, or hovering distantly along the horizon, even when he is right up close, even when he is in my arms. I don't know why I feel this way, or what to do to hold on to him. Somewhere in the world, right now, a new baby has been born and everyone is celebrating that he is just so perfect. All around me spring is bursting forth. There's
flowers and birdsong and mothers with babies. All of this depresses me, and I cannot stand to admit it.

‘I don't
know
what's wrong with him,' I say. Daniel uses my hands like tools, opening my fingers and putting them on to his train so I will roll it. He spins on the wooden floor until he falls down, laughing, paces the edges of the garden so that there is a balding path, will eat nothing at all except biscuits and milk, has one stupid toy.

‘He's got
one
toy!' I say. ‘It's like he's hypnotised by it.'

‘What's the toy?' asks Jacob. This is typical and what I love about Jacob. He doesn't say, ‘Then buy him another toy.' He knows I'd have already bought him half the shop.

‘A train.'

Jacob considers this. ‘I used to have trains. My son had trains. I can remember the track took up the whole dining-room table and we built a station out of shoeboxes.'

‘Exactly!' I say. ‘But Daniel doesn't build the track or care about the station. It's just this one stupid train!'

‘Have you taken him to a neurologist?'

That word – neurologist. I hate that word and all it signifies. It seems to me that once you are talking about neurology you are talking about sealed fate.

‘He's going in two weeks to a paediatrician,' I say. ‘The ENT consultant who gave him the hearing test said he was normal.'

‘What
exactly
did the consultant say?' asks Jacob carefully.

So I tell him. ‘They put him in a soundproof room and had him build a tower out of coloured bricks. They wiggled things that made noise and flashed lights. They took some kind of photograph of the inside of Daniel's ear. Then they said he was normal, take him home.'

Jacob nods, rubs his finger over the hair on his lip,
pokes his pale tongue into the corner of his mouth and says, ‘So then what?'

‘I took him home.' I took Daniel home and he stood on the table, trying to reach the light bulb, screaming because he could not. Then he laid the videos out across the living-room carpet with all their edges in perfect alignment. Then I tried to get him to look at me by stealing his train and holding it at the end of my nose. I took him to the park and let him sift sand through his fingers, which is all he would do. No playing tag, no feeding ducks. He used to love to feed the ducks. I went home and thought about how he used to chase them, laughing, how he used to throw balled-up pieces of old bread into the water and watch the ducks skim the surface with their bills. I got out photographs of him at that same duck pond, his face alight, his hands raised to throw more bread. I cried all night so that Stephen had to sleep on the living-room couch. In the morning I threatened to kill myself, which is how I ended up in Jacob's office now, and why I am afraid to leave.

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.