标题: 最值得做的事 （一位英国自闭女童的全职父亲自述）原文及译文 鼓励所有的家长 [打印本页] 作者: umingz 时间: 2009-6-11 10:34 标题: 最值得做的事 （一位英国自闭女童的全职父亲自述）原文及译文 鼓励所有的家长 The best thing I'll ever do
Andrew Sparrow[IMG=0,top]http://[/img]
Published: 12:01AM BST 23 Oct 2006
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'This won't be the most exciting period of my life - but it will probably be the most worthwhile'
When the Telegraph's Andrew Sparrow discovered his three-year-old daughter was autistic and would need intensive one-to-one tuition to effect any improvement, there was only one solution. He resigned from the paper to become a full-time 'mum'
I used to think of myself as a typical modern, hands-on dad – changing nappies, cooking my share of chicken nuggets and often climbing out of bed to deal with the crying in the middle of the night. At one stage, I even used to attend Monkey Music classes in my suit and tie before going to work.
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Revolutionary who won over the newsstandsBut for all my trendy egalitarianism, there was one sacrifice that I would never have considered – giving up my job. Of course, women have often left work after having children, but I assumed that they did so, at least partly, because they didn't particularly enjoy their jobs. I loved mine.
For seven years, I was a political correspondent on this newspaper. When I first joined the parliamentary lobby in 1994, I was given a pass giving me access to the House of Commons, a desk about 100 yards from the chamber and the prospect of travelling abroad with the prime minister. I thought I would never want to leave.
That was certainly my view when Kate, our first daughter, was born in 1999 and I didn't feel any differently when Yvette arrived in 2003.
For the first year or so after Yvette's birth, we had no worries. There were plenty of smiles and chuckles, and she liked her food. She was particularly interested in gadgets. I remember being surprised when Yvette – at an age when her chubby little fingers could not manipulate anything very easily – tried to insert a key into a lock at the bottom of a door.
She liked going to sleep with her legs sticking through the bars of her cot. She would lie there babbling "durdle, durdle, durdle" quite cheerfully and, if she wasn't ready for sleep, she was always happy to play on her own. If she wanted something, such as help with the lever on a pop-up toy or a drink, she had a knowing habit of grabbing your hand and pulling it towards whatever she wanted.
In the summer of 2004, my wife, Anna, and I started to become concerned. Although Yvette had been late in talking, she had started saying a few words at 18 months. Then, the words abruptly dried up. Anxious not to be seen as paranoid parents (which, in retrospect, was a mistake), we didn't contact the health visitor until December.
The health visitor suggested that she might have a hearing problem. So, just before Christmas, we saw an ear specialist, who told us that Yvette had glue ear in both ears. This is a relatively common problem, involving gunk in the middle ear that can temporarily make a child partially deaf, and it normally clears up on its own. We were relieved. Clearly, Yvette wasn't talking because she couldn't hear.
When her glue ear went away after a few weeks, we waited for the words to start gushing out. They didn't. Not only was she not talking but also she still understood only about four words. Increasingly worried, we made a date for a "full developmental assessment" with a community paediatrician.
At one level, Anna and I both accepted that something was seriously wrong. We tentatively discussed autism, but I didn't want to face up to the possibility. I didn't even look it up on the internet.
The appointment was on May 9, just after the general election. We spent an hour and a half in a dingy consulting room, where the doctor performed a series of tests on Yvette. There was a "possibility", he concluded, that she was autistic. But he stressed that he was not an expert and that, at Yvette's age, it was hard to make a firm diagnosis.
Our daughter would be referred to the local autism unit for a conclusive assessment, but it would take at least six months to get an appointment (which is an outrage – like many other aspects of autism provision for those who cannot afford to go private). But, he told us, the delay would not matter because, even if Yvette was definitely autistic, all that she would receive was speech therapy, which she had just started having on the NHS.
Anna and I left the health centre sad and tearful, but not entirely surprised. Afterwards, I started reading as much as I could about autism and soon realised that there was no "possible" about her condition. Yvette never pointed at anything, she never engaged in pretend play, she never responded to her name – all key autism indicators.
And grabbing me by the hand? It had seemed an engaging trait, but it can also be a characteristic of autism. Normal children learn to get what they want by communicating – using words or pointing. Yvette was just using my hand as an implement.
Less useful was what the books had to say about the reaction of most parents to learning that they have an autistic child. Apparently, we often experience a sense of bereavement over the loss of the "normal" child we thought we had. I can't speak for other families, but I didn't feel that way. Like most parents, I just wanted my children to be happy. And, at the age of two, quite content to "durdle" away to herself or fiddle with a bunch of keys, Yvette was as happy as any toddler I had ever seen.
But what if she never learnt to talk? There is no cure for autism and all we were getting from the NHS was a few hours of speech therapy.
We spent the spring of last year looking at all the other kinds of therapy and biomedical intervention that are said to make a difference. Some, we tried, but there was only one that seemed to offer a real prospect of helping Yvette to improve, Applied Behaviour Analysis (ABA).
This involves intensive one-to-one tuition, up to 40 hours a week for two years or more. ABA has been in use for more than 20 years and there is overwhelming evidence that it can produce significant developmental gains, with some children improving so radically that they learn to function "normally" in school.
At first, the prospect of running an ABA programme was so daunting that we didn't consider it seriously. It costs about £30,000 a year and, although some families receive local authority funding, many parents pay themselves. Then there were the logistics. While Anna and I were at work, Yvette had a childminder. If she were at home all day doing ABA, who would cook lunch? Not the tutors, because they were being paid for teaching, not childcare.
However, as the weeks went on and it became obvious that speech therapy and glugging fish oil were not going to make much difference, we reached the conclusion that we could run a programme if one of us stayed at home.
Anna works in the City and earns more than me. Which is why, one evening in July last year, as we were discussing Yvette's future for the umpteenth time over dinner, I said something I could never have predicted 12 months before: "Well, I suppose I could give up work." I still loved being a Daily Telegraph lobby correspondent, but, to my surprise, I didn't agonise over the decision. In fact, it was easy.
In the past, when I had read about parents saying that they loved their disabled child as much as their "normal" children, I used to think that, although it was broadly true, there was probably some tacit way in which the "normal" ones took precedence. I am ashamed to have to admit this because I realise now that I was totally wrong.
The urge to look after your children is strong, but it was not until last summer that I knew how powerful it could be. I still had plenty of journalistic ambitions. But I realised that, more than anything, I just wanted my daughter to speak.
We arranged for Yvette to have another developmental assessment (privately) just to confirm that she was autistic (she was) and found a consultant to help us set up the ABA programme (Esther Dontoh, from the UK Young Autism Project). Then, I handed in my resignation. I told colleagues that I expected to be at home until Yvette started school, probably in autumn of 2007. I didn't ask for, or receive, any assurances about getting my job back, but I am reasonably confident about being able to resume a journalistic career when the time comes.
Almost everyone was sympathetic. One female political columnist, whom I knew only slightly, bounded up and told me that what I was doing was wonderful. I muttered something about it being a straightforward decision because Anna was earning more… "But most men would never admit that," she said. I am not sure if that is true these days, but I was grateful for her words, anyway.
The MPs I knew well were even more effusive and I received dozens of supportive letters. Partly, of course, they were just being polite to someone who might write about them again. Maybe, their reaction also had something to do with the fact that it is now fashionable to be an interventionist dad.
I have grown used to hearing David Cameron and Gordon Brown harp on about getting up in the night to tend to their children. Although, interestingly, women ministers with young children never feel that sleeplessness is anything to boast about.
But I also suspect that, for some of the MPs, my story touched a nerve. "Too many politicians fail to put their families first and we can learn a lot from you," wrote one MP in his thirties. I think he was being sincere.
Meanwhile, I had to learn how to run an ABA programme. One of the difficulties is that you have to find your own tutors. So, while I was working out my notice, we interviewed about a dozen candidates – mostly students – and hired three: a student; a foreign graduate; and a mother with an autistic child of her own. They would be paid £45 each for a session or £110 for a full day.
After I gave up work last November, we started with a three-day workshop, run by Esther, at which we were all taught the rudiments. Then we launched straight in: four adults doing intensive teaching for seven hours a day. Yvette, at that point, was able to say and understand only about six words.
Journalists often talk about "getting someone to talk" – shorthand for interviewing skills. Nowadays, that is not trade jargon, but an exact description of what I do with my three-year-old daughter.
While Yvette sits at a small wooden table, I take her through various exercises. We work on about a dozen new skills at a time, such as learning the names of objects, and we repeat the exercises over and over, and over again.
I normally conduct about two morning or afternoon sessions per week. In theory, I could try to do the whole lot myself, but the work is desperately repetitive and I suspect I would go mad. Indeed, I would have been tempted to give up quite early on if I hadn't thought the sessions were having an effect.
But, within weeks, we were getting significant results. Before Christmas, I heard Yvette say a recognisable "Open the door". It was probably the first time she had ever used a phrase with a verb and a noun.
A few weeks later, she said a clear "Mummy", after months of mumbling "Muggy". And, at one of Esther's follow-up workshops, she actually counted to 10, numbers I didn't even realise she knew.
Being at home full-time, I was also able to put Yvette on a gluten-free diet, which seemed to help her concentration, as it apparently does for many autistic children.
In May this year, Yvette started attending nursery for just one morning a week. She mostly ignores the other children and never tries to communicate with them. But one of the boys makes an effort to play with her. "Yvette's my friend," he said one day.
Of all the things that have happened, that was one of the most moving. I am reminded every day that Yvette's ability to navigate her way through life will depend on the willingness of others to treat her not with scorn or derision, but with patience, tolerance and generosity.
Meanwhile, she continues to make huge progress in some areas. She understands more than 100 words or phrases and her eye contact, concentration and ability to copy words or actions have all improved enormously. But our attempts to encourage her to talk independently have been less successful. There is still some severe malfunction in her mental software. It is as if she can talk, but does not see why she should.
One of the problems with writing about autism is that readers tend to want an ending. But there is no ending. We are confident that we are doing all we can, but we have no real idea how Yvette will develop and the professionals don't either. We don't even know whether she will go to a mainstream or a specialist school.
She is still, on the whole, content, although we worry how long that will last if she cannot communicate with her peers. I still believe that having a happy and healthy child is the most important thing any parent could desire, but I do at least want Yvette to be able to tell us that she is happy and healthy. So far, she can't.
Yvette isn't the only one who has changed in the past nine months. I have probably become more sentimental and I am far more domesticated than I was before. When I left work, I expected to have hours of free time to myself. I hadn't realised how long I was going to spend cooking, cleaning, and clearing up. Unless you have finely developed slob instincts, you are sucked into endless tedious tasks when you are at home full-time.
I have at last understood why housewives find it so annoying being asked: "What do you do all day?" It is not because of the implied accusation of time-wasting. It is because it is often so hard to remember.
As fatherhood gradually becomes feminised, millions of men are experiencing this. The difference with me is that it all happened rather abruptly. I am no longer a typical hands-on dad. I have become a mum.
I am not overjoyed about this. To be honest, I was perfectly happy being a weekend father and I would much rather be back at Westminster. I am also not entirely comfortable with the way that stay-at-home parents manage to wangle all the credit.
It is only because Anna is earning enough to support the family that I can afford to help Yvette, but my wife has received no plaudits from eminent columnists or handwritten letters from cabinet ministers.
In years to come, I won't remember this as the most exciting period of my life. Nor will I think of it as the most tiring, or difficult, or intellectually demanding. Not knowing how Yvette will develop, I can't even say it will turn out to be the most rewarding thing I ever do.
But I am pretty sure about one thing – it will probably be the most worthwhile.
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