Daniel Isn't Talking
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The speech therapist is pregnant – I’d say about six months, judging by the look of her. She has an intelligent, lively face and a jolly American voice. She turns in her office chair, Daniel’s file in front of her, and hikes her legs up under her skirt. With no hesitation whatsoever she speaks to me directly about the problem, my son, before her.
‘Moderate, but not severe,’ she says, squinting through her rimless glasses. She wears a half-dozen studs in her left ear, has a cloud of curly black hair pinned up over her head, and a big smile that overshadows the acne she’s acquired during pregnancy. ‘Of course, I am perfectly wrong to even say he’s autistic. It’s not in my training. If I were you, however, I’d be thinking about special school and about respite care. You really have no choice.’
This is what Stephen says, that we have no choice. He thinks Daniel must go as soon as possible to a special nursery school for children with learning difficulties. He insists. That is the worst problem he is handing me right now, but not the only one.
‘Yes, I do have a choice,’ I say.
She laughs. ‘You’re a tough cookie, but I’m telling you for a fact this is a big one, autism. Regular speech therapists like me can’t even touch it. Give me your basic kid with a mild language disorder and I’ll fill your ears with good ideas. But your boy?’ She shakes her head.
In front of us, Daniel sits with his feet behind him so his legs form a ‘w’. He tears the pages of a magazine I’ve bought him, one featuring Thomas the Tank Engine. He seems completely oblivious to me and the speech therapist, to all the speculation about him. Nothing interests him at all other than the steady ripping sound he makes on the glossy pages of his magazine.
‘Why not Daniel?’ I say. The speech therapist looks at me, then at Daniel, chewing her lip. I say, ‘Just tell me the truth. You cannot possibly make me feel bad.’ Of course, this is a lie. She’s already made me feel bad. She’s telling me no. And she’s telling me no because she sees Daniel as unteachable, at least this is how I see it. ‘Please,’ I urge her. ‘I’ve already been through it all. Just level with me.’
She sighs, shrugs her heavy shoulders, heaves her opulent, pendulous breasts. ‘Because he isn’t talking,’ she says. ‘If he was even saying a handful of words I’d give it a shot. But I’m not qualified to treat this kind of thing. You are going to need special help here. Like I said, you might consider a school –’
‘He’s only three years old.’
‘I mean later, when he’s a bit older.’
‘I don’t want to wait until he’s older!’ I say, perhaps a little too harshly.
The speech therapist opens her mouth to say something and then, just as quickly, decides not to. She sets her face and I know at once that I’ve lost this one. Then she says, ‘I’d like to help you, Mrs Marsh. Really, I would. But I can’t.’
I waited four weeks for this appointment. I’m here instead of at the airport where, according to my watch, Stephen’s plane has just landed. He’s been away for three days and I haven’t gotten a single phone call. I keep waiting for the call that says he’s sorry, that he’s coming home. When I dial his mobile all I get is voice-mail. I don’t know if that’s because he can’t get his phone to work in Vienna or whether he has decided not to answer it.
‘Surely you could help me get started,’ I beg the speech therapist. ‘To get him talking, I mean.’
‘No, ma’am. Really, I don’t know how.’
I have pages of questions, an open cheque book, a lot of time. I am ready to do whatever she says he needs – and she says she doesn’t know how?
‘What about this stuff called Applied Behaviour Analysis?’ I ask. I have discovered a book called Let Me Hear Your Voice by Catherine Maurice, the mother of two autistic children. In it, she claims that ABA brought her children from autism to normality in just over two years. It sounds impossible, but it also sounds like hope.
‘ABA is Lovaas,’ says the speech therapist, raising her eyebrows. ‘I’m from Los Angeles where Lovaas worked. Lovaas kids don’t use language in context. They can respond robotically to specific stimuli. Like if I said, “What is your name?” then the child would state his name. But he wouldn’t understand language.’
‘I see.’
She scoots her chair forward a bit, tries to cross her legs, but finds that is too much effort with her pregnant belly.
‘But if Daniel could say his name and a few other words, you would work with him. That’s what you said before. A handful of words and you’d try.’
She laughs, points at me. ‘You got me,’ she says.
‘I got you,’ I smile back. However exasperating, I am willing to play the game.
‘OΚ, look,’ she says, shrugging one shoulder, then the other. ‘If he learned them spontaneously, yes, but not if they were drummed into him Lovaas-style,’ she says.
‘How would you know?’ I ask her. ‘Can I at least try?’
‘I’d know,’ she says, gives me a wink. I don’t know how she stays so cheerful through this conversation. There is something very abnormal about how happy she is to tell me she can’t help. ‘And don’t even think about using that Andy O’Connor. You’ll hear of him if you’re looking toward the behavioural psychology approach. He’s got no qualifications other than an undergraduate degree, no formal training in working with children. He’s a maverick. No decent university or health authority would have him. And he charges the moon, too. A cornball rip-off artist, swindler of the first degree. You don’t even want to come near him.’
‘What does he do, this Andy O’Connor?’ I ask.
‘Oh, he claims he does everything,’ she says, rolling her eyes. ‘Teach them to talk, get them to play. What a shyster.’
Andy O’Connor. I will not forget that name.
Because Stephen won’t ring me back, I go to his office with Daniel. Third floor, end of corridor, corner office, overlooking Hyde Park. I sit in his big office chair swivelling the minutes away, while Daniel climbs over his desk, paws at the computer keys, presses buttons on the phone.
Ten minutes and no Stephen. I switch on his computer, log on to the Internet using his password, which I guess first time: Emily. I then pull up his emails and have a little look through. From his brother I get cricket scores and some boring garbage about team selections. Many emails from others in his office, of course. From me scores of unread posts with headers such as ‘Read this PLEASE’ and ‘SHALL I ALERT THE POLICE?’. I dispatched them from an Internet café on Baker Street. All … let’s see … seventeen of them.
A quarter of an hour goes by. Well, he’s probably in a meeting.
Daniel is in the chair now and I’m on the desk. I’ve kicked off my shoes and am turning Daniel in the chair with my feet. He likes this, his eyes light up. What I am trying to do is to get him to clap, so I turn the chair, stop, clap, then wait for him to do the same before turning it again. But he won’t clap. I have pictures of him clapping when he was only twelve months old, but he won’t clap now. Why won’t he clap?
‘Clap,’ I tell him. But he doesn’t understand. I take his hands and bring his palms together. ‘Clap,’ I say, then wheel him in the chair again. ‘Yeah! You’re clapping!’ I tell him, which is almost the truth.
Twenty-five minutes. I am breastfeeding Daniel in Stephen’s office chair. He would just scream if he saw this.
Forty-minutes. Daniel is asleep.
Fifty-five minutes. Stephen’s assistant, a woman, comes into his office with some papers, finding Daniel and me there.
‘I’m sorry, Melanie,’ she says now. ‘But he’s not in today. Did no one tell you that?’
No one told me.
‘He’s working from home,’ she says. She looks very confused, a little flustered. Now she leaves quickly, her heels clicking against the floor.
10
One mistake was making all of Stephen’s friends my friends. I cosied up to the wives and girlfriends of his chums from school, from university,
and now that he has walked out, I am set loose from their circles. They don’t know quite what to say to me.
‘I’m sure this is only temporary,’ is one set piece I hear. But if it is only temporary, and Stephen will return home any minute, why do they avoid me? If, surely, it will all come right, as they suggest?
They turn out to be his friends and not mine at all. Never were.
‘We’re terribly sorry,’ they say. But they do not invite me to see them. Do not want to come here either. Their diaries are full. Their children have nasty colds; their jobs have implacable demands.
‘You won’t believe what happened yesterday!’ says the wife of Stephen’s university friend, a couple we’ve gone on holiday with, who we’ve exchanged Christmas presents with, who I thought actually liked me. ‘I have been asked to do work in Bristol for every weekend until August!’
‘Have you?’ I say. And no, I don’t believe her.
And it seems to me I’ve burned through all my own friends, the mothers I met at childbirth classes, for example. They have normal children and average problems. Husbands that work late, not enough money, or perhaps a child with grommets in his ears. That’s about the extent of their problems. So hard to stay on course around them, asking them important questions about which holiday worked well for them, why they prefer one catchment area over another, how they like the new nanny agency, or the new nanny, or the new job, or the newborn. And they, too, grow weary with my situation. I am living proof that there are no guarantees with our children, that bad things can happen. They see nothing appealing about my child and I see their own children as geniuses simply because they do the amazing, expected, miraculous and completely average feat of developing like normal children.
‘It’s so cute the way Theo says Mickey Mouse,’ says this one here who I know from a postnatal group and who sends her daughter to the same pre-school as I send Emily. Theo is the little brother just a baby. ‘Say it for Melanie, sweetie. Say Mickey Mouse.’
‘Icky Owse,’ says Theo, then a big smile.
‘It’s the cutest thing, don’t you think?’ says Theo’s mother. She’s supposed to be a friend. Or at least friend-like. Her name is Becca and I’ve had her over for tea before.
‘Adorable,’ I say, nodding, forcing a smile. Daniel is asleep in the pushchair, so at least I don’t have to listen to his iron silence in contast to Theo’s giggling and new, beautiful words.
‘He’s only sixteen months, you know,’ says Becca, who I might like to kill right now except her baby can talk and he’d probably report me.
‘It wasn’t the MMR, was it?’ asks another of the mothers who wait at the gate, as I do, each afternoon at twelve thirty. It’s one of my least favourite moments of the day – not that I can’t wait to see Emily – but it is all I can do to stand among the crowd of nannies telling children Daniel’s same age to shut up, stop making so much noise, while I try desperately to get Daniel to imitate me as I make faces, or point at a red bus, or laugh when I blow raspberries on his tummy.
‘I don’t know,’ I say honestly.
‘They say the doctor who claimed it was the MMR is a fraud, you know,’ says another. She’s only here because she’s waiting with her friend. Her children are older, both at St Paul’s Girls’ School – the sort of place that makes me shiver.
Now I realise the MMR is a good, solid medical precaution that has nothing to do with autism. That’s true and right. I have heard the radio shows, the TV reports, all of which assure me that my feeling the MMR is to blame for Daniel’s autism is something I’ve completely made up. But you know, there is this part of me that understands with absolute certainty that I didn’t make it up. I could have been hallucinating and still I wouldn’t have missed the signs that after that shot my baby changed.
‘I don’t think that doctor is a fraud,’ I say.
‘Oh please,’ says the St Paul’s mother. ‘He lied. He joined the parents who just want someone to blame.’ She is dressed in blue and white linen and has a beautiful heart-shaped face. She is a woman whose hands have never cleaned her child’s excrement from walls, never waited through hour-long temper tantrums, never hurt for anything, I imagine. But she wants to hurt me. Of that, I’m positive.
‘My son has autism and he has problems with his bowels,’ I say to this lady, who doesn’t give a damn.
‘Well, it has nothing to do with vaccinations,’ she sniffs. ‘Vaccinations save children’s lives!’
She turns away from me, shoulder to shoulder with the other mother, looking into the distance at the school, preparing for the moment it releases dozens of pre-schoolers to this waiting crowd.
Iris has never heard of Andy O’Connor, but she’s heard of ABA and is sceptical.
‘It’s probably just another scam,’ she says, her voice full of caution.
‘A scam?’ I say. My heart sinks. I have come almost to rely upon the idea that ABA is the answer for Daniel.
Iris says, ‘Not to mention expensive. But then my information is a little old. I’ll make some calls.’
And with that, another door shuts.
But a few hours later I hear from Iris again. She has spent the morning on the telephone, seeking information about Andy O’Connor. Her voice bubbles over the line, filling me with hope even before she gets the words out.
‘Andy O’Connor is gold dust,’ she says. ‘The few mothers I’ve spoke to say he’s just amazing! Apparently, all the kids love him.’
‘And he can help me? Help Daniel, I mean?’
‘Just get him,’ says Iris. Her voice is calm but certain, delivering the phone number to me as though it is a secret code. ‘Make sure he agrees to see you.’
‘I will,’ I tell her.
‘Don’t give up,’ she says. When her son was Daniel’s age there was no treatment of the sort that Andy O’Connor can provide. Not in England anyway. If I were her, I’d be bitter about this, but Iris only wants to help me, to help my son.
‘What can I do for you?’ I ask her genuinely.
‘Make that call,’ she says. Then she has to ring off. Her son wants to go on the Internet – again – and they only have one phone line.
I call Andy O’Connor a dozen times and all I get is his voicemail.
‘Hello, you’ve reached Andy O’Connor. I’m not able to take on any new clients at the moment, but if you would like to leave your name …’ He has an Irish accent, a quick and friendly voice. But does he call me back? No.
I’ve left polite messages, curt messages, messages in which I apologise for leaving so many messages. I’ve left messages adding to and correcting other messages. In my most urgent voice I’ve asked him to please telephone me right away. In my most pleading voice I’ve insisted he call me. I even pretended to be a reporter from the Daily Telegraph interested in doing an article on him, but I think he might have recognised my voice by then from all those other times I called. Still nothing.
I guess it is the ‘not able to take on any new clients’ part of his voicemail that is the reason for him not calling back.
This last message is my final one. ‘Hello, Andy. What do you say to a girl with an undergraduate degree in English from Tufts and a postgraduate degree from Oxford? Give up? You say, “I’ll have that burger with fries, please.”’
It’s an old joke, but the next morning he rings.
‘I’ll have that burger with fries, please,’ he laughs.
While Emily is at pre-school, I go through exercises that I’ve learned from a book about Applied Behaviour Analysis, this stuff Andy O’Connor does and which the speech therapist claims is deceitful, a waste of time. Andy can’t see us for several weeks. ‘Too many children right now,’ he tells me on the phone. ‘These mothers are running me ragged! I barely get to sleep at night!’
‘Well, why should you sleep when all the rest of us aren’t allowed to sleep?’ I tease.
‘Why, indeed!’ he says. He sounds a good-natured man, gentle, optimistic. He knows how hard it is to live
with a non-verbal child. He will come as soon as he can.
‘You’re American?’ he says. ‘I like Americans. Well, the girls.’
And I like Andy. Can’t help it. He’s the only one holding any useful cards right now, and I really don’t care how much I have to pay him. Stephen is convinced we have to get Daniel into some sort of programme right away. He believes that special school is the answer. He calls me from the office to tell me so. My answer to him is that we haven’t even tried yet. If he would just come home and read some of these books with me, he’d see autistic kids have more scope than he realises.
‘I can’t come right now,’ he says.
‘What on earth prevents you!’ I ask.
‘Your temper for one thing. That prevents me.’
‘Oh, right.’ I can’t take him seriously, behaving like this. ‘Big scary me!’ I say.
‘There are schools –’
‘If he goes into one of those schools we’ll never get him out,’ I say. ‘Anyway, we can always put him in a special school if we don’t succeed at this other thing. You’re throwing in the towel before the fight even begins!’
‘I’m tired of fighting with you,’ he says.