Late one night, just after I have finally fallen asleep, the phone rings. I think it’s my brother so I pick it up and say, ‘Larry, what disaster has struck such that you are willing to spend actual real live money to call me?’
‘It’s not Larry,’ says the voice. It is Stephen.
I sit up in bed, hug my knees to my chest. Months ago I’d have given anything for him to call me late at night. Now I’m not even sure what to say to him. ‘You miss your dad?’ I say.
‘Yeah, that.’ There’s a pause. Then, ‘You never liked him.’
I sigh. ‘This is the worst time. It will get better. After my mother died I kept dialling her phone number and then I’d remember all over again that she wasn’t there. And I kept seeing people who looked like her. But over a few months that faded. About a year later I was more or less OK again.’
‘You don’t miss her now?’
I consider this. It sounds so awful to say you get over something as dreadful and final as a parent’s death. But you do. The only time I’ve missed her in recent years was when Daniel was diagnosed. She’d have loved Daniel just as he is, autistic or not. I tell Stephen, ‘I think of her but it doesn’t hurt any more.’
‘I keep thinking about Daniel,’ he says.
‘Yeah, well.’
‘You don’t get over that, do you?’ he says.
No, you don’t get over that. Daniel has his good days; he has his bad days. Yesterday morning Andy and I took the children to a big adventure playground and lost him. I was helping Emily out of the swing. Andy was answering one of the many SOS calls he gets from autism mothers on a daily basis. I looked up and couldn’t see Daniel, motioned to Andy to look for him. He circled the playground and came up with nothing. Within minutes I was running all over screaming Daniel’s name. Andy charged over to a groundskeeper to ask him for help. We rounded up several mothers to help search for him. While giving them a description of him – brown eyes, blond hair, green shorts and a yellow T-shirt – I had a sudden moment of nausea as I realised it was like giving a missing person’s report to the police. It all felt so hopeless. I burst into tears and looked to Andy but found he couldn’t really comfort me. All he could do was what we were doing right then, asking people to help.
‘You think he’s getting much better, right?’ says Stephen. I know that tone of voice so well and all the feelings behind it. It’s usually me who asks this kind of thing, begging a particular kind of answer. Stephen wants me to say yes, of course he’s getting better. It will all be fine. There’s nothing to worry about.
‘You bet,’ I tell him. I don’t tell him that Andy and I were both hysterical by the time we finally found Daniel. He was sitting inside a play tunnel tapping a stick against its side. There had been a half-dozen people screaming his name all around him, and yet he had not answered or even seemed to notice.
After Stephen hangs up I call Andy. It is after midnight so, of course, Andy doesn’t answer. All I get is his voicemail asking me to please leave a message.
On Andy’s voicemail I say, ‘I was just thinking of you. Thought I’d say hello.’
Andy is here most evenings now, stopping by after work. He arrives in jeans and trainers, a rucksack slung over his shoulder his hair standing up. He seems always to be smiling. Emily plays a game where she ties his laces to a kitchen chair and he pretends not to notice, then falls down comically when he stands. Daniel brings him trains and says, ‘Play with me,’ just as we’ve taught him. Andy is a part of the household. A nice part, I think.
‘Not so bad,’ is Veena’s estimation. I think it’s the nicest comment she’s ever made about a man.
Tonight, after the children have fallen asleep, we are having a discussion about religion – well, as close as you can get to religion in my household.
‘We weren’t really religious. My father was Jewish but my mother was an atheist,’ I tell Andy and Veena.
‘Didn’t that pose a problem, your parents having different religions?’ asks Andy. ‘Near where I come from they’d have to kill each other.’
‘Well, no. The two positions are strangely compatible. After Dad died my mother’s one concession to Judaism was to hate anything that was definitely not Jewish while not actually teaching us about Judaism either. Because, of course, she didn’t know. So, for example, if she saw a statue of a Virgin Mary in someone’s garden, which is not so unusual a sight where I come from, she would say something mildly disapproving about it. But at Hanukkah and Passover she merely announced the day and then proceeded to ignore it. I think she gave us a dreidel once, but no one knew how to play.’
‘We get Lent,’ says Andy. ‘You have to give something up.’
‘What do you give up?’ Veena asks him.
‘Not a damn thing,’ he says.
‘So I take it you’re not a practising Catholic?’ Veena deadpans. To me she says, ‘Were your mother’s parents atheists?’
‘Quakers,’ I say.
‘That sounds like a person with a palsy,’ says Veena.
‘I think it just means you’re nice to people.’
‘Hindus are nice to people,’ says Veena. ‘Unless the people are Muslims.’
‘Nice to cows,’ says Andy.
‘What do you know about Hinduism?’ Veena says, looking at him as though the notion that he could know anything at all was utterly impossible.
‘Nothing,’ says Andy, ‘except they like cows.’
‘What do you believe?’ Veena asks him now. She looks at him squarely. She is a woman who thinks only uneducated people believe in God. Only cretins. She says such people are happier than she is, such people are blessed.
Andy flushes, then meets her challenge. ‘I believe in the Father, the Son and the Holy Spirit,’ he says. ‘In the whole Holy Works. I believe it all, but not the Pope. The Pope can kiss my arse.’
Veena turns to me now. ‘And what about you, Melanie? Any leaders of world religions you feel ought to make contact with your arse?’
I shake my head as though declining an offer of tea. ‘No,’ I say. ‘I’m good.’
‘She doesn’t like the Pope either,’ Andy says to Veena, watching me as he does so. ‘She told me that, you know, secretly,’ he says.
‘Oh, so now we have secrets, do we?’ says Veena.
Another night, just as we are about to eat dinner, I hear Stephen’s voice from the answering machine. ‘Look, Melanie, I think you should call me,’ he says.
He speaks in a kind of office tone and I think I know what you should call me is all about. He’s obviously heard from the estate agent about the dung pile that is preventing the sale of the cottage, which he didn’t know was on the market. So now he’s figured out what I’m up to and he undoubtedly has his opinions on the matter.
‘Don’t pick up the phone at all tonight,’ I say. We are taking our food out to the garden for a picnic. All five of us carry plates or spoons or glasses. Even Daniel carries something, a single straw. ‘Stephen must have been informed about the dung situation.’
‘The dung situation?’ Veena says.
Andy says, ‘Did you just say dung?’
22
To ask a person to do nothing for their child or to do very little is unfair. For them to do nothing means they have to fight the overwhelming desire to push away the danger, to run through the flames, to slay the dragon. However hopeless the situation might appear, it is infinitely more difficult to do nothing than even an ill-considered something. I knew a man whose teenage son was stabbed to death in the early hours of a Saturday night by kids his own age who wanted his trainers. This was some years ago. His father had repeated dreams – the day and night dreams that I came to be familiar with after Daniel’s diagnosis – in which he was there when it happened, just behind the gang as they circled his boy. There, hidden in the luxuriant green of unkempt bushes, he would be crouching. Or he stepped off the bus just in time to reach over and pluck his son, vibrant and alive, from the hands of his attackers. In his dreams
the five-inch steel blade that pierced his son’s chest never so much as scratched his skin. Instead, he took his child in his arms as he had as a baby, running at a supernatural speed, flying even, not knowing where he was going but knowing it was away. Away from threat and danger and harm, away from four youths and their deadly, sharpened blade.
But the dreams were only dreams. The reality was the boy died. The father slept.
My reality is that my child lives peacefully within a dysfunctional brain while I search madly – tear myself apart – trying to think for the both of us how to get out of the burning building of autism. Even using this method – this play therapy mixed with applied behaviour therapy and whatever else Andy brings to bear – there are limitations. With every learned word or spontaneous moment of play, I see Daniel becoming more like any other child, less ‘autistic’-seeming, and I know that if he will interact with others as he is now interacting with Andy, with me and with Emily, his life will not be entirely ruined by the condition. But there is also a time factor. As he develops so do all the other children around him. He has to race to catch up or never catch up at all. I understand this very well. It is almost as though someone has told me, ‘If he is going to escape the fire, he must do so early before the roof caves in.’
Daniel plays with Teletubbies and Tweenies, with cars, with trains (of course). He runs with Emily, chasing her with good-heartedness and smiles. He can talk and he can tell me what he likes and doesn’t like. He will listen to stories if you present them with enough animation and will draw pictures if you bribe him with chocolate. All of this shows enormous progress; impressive, extraordinary strides. I don’t mean to trivialise this progress or make it count for nothing. But he hasn’t left the burning building.
The doctors have a way of speaking to me that is unnerving, strange. It used to be, for example, that when I went to see doctors they asked me what the trouble was. But now they have a mildly pitying look in their eyes. ‘Why do you think you are here?’ says this one, who is supposed to be a specialist in neurological conditions.
By accident? By abduction? Is this a philosophical question? I have to play it straight. Part of being the parent of an autistic child means humouring the same people you pay great sums to.
‘He doesn’t walk at all well and he says his legs hurt.’
The doctor looks down at Daniel, who is seated on the floor with his trains. If we wait long enough Daniel will look up, rub his knee and say, ‘Leg hurts. My leg hurts.’ He’s been telling me this every day for a week.
‘That is because he’s autistic,’ says the doctor, a man with a coat, a stethoscope, a Physicians’ Desk Reference, a computer and an examination table. So I guess he is a doctor.
‘What would the autism affect? The legs or the complaint that the legs hurt?’ I ask.
The doctor considers this.
‘Well, either, really. It may not be his legs per se which are bothering him. It may be that something hurts him but he says it is the leg, even though the pain is from elsewhere.’
‘He knows what a leg is,’ I say.
The doctor looks at me as though I am a bit of a problem myself. Nothing like his own wife, who smiles from the polished frames of several photographs, along with his children, all girls.
He says, ‘I look after the primary care of a residential school for autistic children. They say whatever pops into their heads or nothing at all.’
It occurs to me that you might as well say nothing at all if whatever you do say is interpreted as gibberish. And I know the “school” he means. They call it a school because the residents in it are under eighteen.
Ten minutes later this same consultant is telling me Daniel can only be very literal. He can only say what he sees factually and that he cannot make things up. Cannot lie or interpret abstract concepts. This is because he is autistic. The doctor informs me also that Daniel does not feel pain like other children, normal children.
‘Wait, let me tell this to you once more,’ I say to the doctor. ‘Let me start again because I truly believe you have the ability to understand.’
The doctor’s face grows dark. He’s dealt with autism mothers before. ‘Yes,’ he says sharply.
Pointing to Daniel I say, very slowly, ‘He says his legs hurt.’
But the doctor is uninterested, already checking the next patient file, feeling no concern at all about anything Daniel says.
That same doctor told me that in the school over which he presides the children drink cow’s milk by the bucket, can spin without becoming dizzy, and don’t feel pain. I tried to tell him about a theory that autistic children have an intestinal problem and cannot digest cow’s milk. That the milk does something to them that seems to make them more ‘autistic’, and that removal of the milk may help. Not in all cases, but in some cases. Perhaps they ought to try getting rid of the milk?
‘Use goat’s milk,’ I said. ‘Raw, unpasteurised. Or if that doesn’t work, use rice milk.’
‘They’d taste the difference,’ said the doctor. ‘If you take away their milk, these children will starve.’
‘OK, OK,’ I said. I understand the trouble with getting autistic kids to eat. I spend hours every day grating courgettes to hide in burgers, stirring organic egg yolks into dairy-free yogurt. ‘Then put one-tenth goat’s milk into nine-tenths cow’s milk. Every week add more goat’s milk and less cow’s milk. Then eventually get rid of the cow’s milk. This works. I’ve seen it work.’
‘Your child is not so badly autistic,’ said the doctor.
There was no point in telling this doctor that Daniel’s initial diagnosis was moderate autism, not mild autism. Not Asperger’s. Or about all the other kids I’ve heard of who have improved. So I said, ‘That may be true, Doctor. But to a mother there is no such thing as a hopeless case. Maybe you could just try –’
‘No,’ he said, clearly annoyed. I’d touched a nerve with him. Perhaps another autism mother had suggested the same thing. He looked at me with the coldness of a tanker, set his eyes on Daniel and then on me again. ‘We don’t have time for experiments.’
So they spin, all the children in his care. I’ll never forget how the doctor said, just before we left, ‘They spin and they don’t get dizzy!’ as though this personal trait of autistic children was wonderful, exciting, something to build upon.
Today is a little exhausting. Daniel hops all over the furniture, running into the walls on purpose, not talking much. He visits me as I make his special muffins in the kitchen, colliding into me like a chuckling tornado. I am pleased when he grows dizzy and has to sit down. Normal, I tell myself. Stop fretting. He comes to me, his lips pursed like two sides of a peeled banana, giving me what looks like a monkey kiss. ‘I love you,’ I tell him.
‘I love you,’ he says. Is he repeating what I say as an echo, the way a parrot might? Or does he mean it?
‘Why do you love me?’ I ask him. An inane question no child can answer.
‘You like trains,’ he says. Does he have the pronouns correct? Or does he mean that he likes trains?
I point to my chest, ‘Me?’ I ask. My heart lights up as he nods.
It seems to me I see autistic children everywhere now, at parks, at railway stations, in supermarkets, or just walking down the road. Some of the mothers, like me, are a bit preoccupied, a bit nervy. We have an instant affinity, a common ground. We waste no time, allowing for only the briefest of introductions. From such mothers I have learned that Daniel needs more zinc, more magnesium, more vitamin Β than other children. I have learned that Disneyland allows autistic children special passes so they do not have to wait in line, which will be great if I ever have the money to take the children there. I learn about free swimming at the local public pool, about ideas for how to teach language. They are big-hearted, open-handed. They are lovely.
Sometimes, however, even the parents annoy me. They say, ‘The hardest part is …’ and then fill in the blank with something that isn’t the hardest part at all. When ot
hers stare at you in public places or say some small insulting thing is not the hardest part. When relatives fail to understand or to help out is not the hardest part. The hardest part is what you think and feel privately in your own home, usually at night, often when alone. But we don’t talk about that, the hardest part. Nor do we talk about the number of autistic children who drown annually, or get killed running across roads or by swallowing wrong objects. We don’t talk about our marriages, or our hopes for the future. We don’t like to think of the future.
Some mothers appear to make a badge out of autism, behaving as though it is not a disability but a ‘difference’ and that we shouldn’t be seeking to cure these children. Understanding is what is in order, they cry, a broader mind, an enlightened perspective. What you know about such people is that they have a child who functions very well, who may have Asperger’s syndrome and not full-blown autism, and that they have probably not scrubbed faeces from their carpet, or watched their child cry and rock in what looks like agony because he cannot speak. These people annoy me a little, although I admire how they cope, admire their presence of mind, their fearless defences of their children. But we’ve walked different paths, and they are talking about mine as though they’ve been there, which they have not, and will not. Because having a child with autism – at least the type of autism I have experienced – is less like walking a path than hacking at a jungle with a scythe, not able to see much in front of you at all except more stuff you have to clear or step over, or around, or through.
Still, Daniel has told me he loves me. If I allow myself, I can see that Daniel has begun to clear his own path, has taken up his own scythe. One day he will ask me what autism is and I will be tempted to hold it up like a badge and tell him it is a difference. Only a difference.
Daniel Isn't Talking Page 22