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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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简介
当英国电讯报记者Andrew Sparrow得知他三岁的女儿患有孤独症，需要一对一的强化训练才有改善的希望时，办法只有一个。他辞掉了报社的工作，成了一个全职‘妈妈’。
我一直觉得自己是个新潮的参与型的爸爸---我会给孩子换尿片，会炸自己那一份鸡块，会在夜里起来哄哭闹的孩子。有一阵，我还在上班之前西装革履地陪孩子参加小猴子音乐班（Monkey Music，一个用音乐对婴幼儿做早教的机构---译者注）。
但是尽管我信奉目前时髦的男女平等的概念，有一样东西我是决不会放弃的---那就是我的工作。当然，女士们一般都在生了孩子之后放弃工作，不过我认为一部分原因是她们本来就不怎么喜欢她们的工作。而我热爱我的工作。
我在这个报社任政治新闻记者已经七年了。1994年我刚刚加入议会旁听时，我得到了一张可以出入下议院的通行证，有一张离议会辩论厅只有100码远的办公桌，还有随同首相出访的可能性。我想我是永远也不会放弃这样一份工作的。
1999年我的大女儿Kate出生时，我确实就是这样想的。2003年我的二女儿Yvette出生时，我的想法一点也没变。
Yvette出生的头一年多，我们没有担心。她是个快乐的孩子，食欲也很好。她对机械的玩艺儿有特别的兴趣。我记得在她胖乎乎的手指还不能灵活地摆弄东西时，她就拿了一把钥匙去捅门下面的一个钥匙眼儿。我当时感到很惊奇。
她喜欢睡觉时把小腿伸到小床栏杆的外面。她喜欢躺在那里，嘴里发出‘嘚嘟嘚嘟嘚嘟’的声音。如果她还不睏，她就安静地自己玩儿。如果她想要什么东西，比如要你帮她按一下弹出式玩具的杠杆，或是要饮料，我们都知道她会抓住你的手，把你拉到她要的东西那里。
2004年夏天，我和我的妻子Anna开始觉得不对劲了。Yvette讲话是晚了点，但是她十八个月大的时候已经会说几个字了。然后忽然就连这几个字也不说了。由于怕别人说我们过度焦虑（现在看来这是个错误），直到12月份我们才对家庭保健护士说了这个情况。
保健护士说她也许有听力问题。于是在圣诞节之前，我们去见了一个耳科医生。医生说Yvette两只耳朵都有咽鼓管堵塞的问题。这个问题很常见。中耳道里一些粘稠物质造成孩子暂时性地丧失部分听力，一般会自行痊愈。我们松了一口气。Yvette的听力不好，当然就不会说话了。
几个星期之后，Yvette的咽鼓管不再堵塞了。我们等着大量的词汇从她嘴里涌出来。可是没有。她不仅仅是不说话，她能听懂的词汇也只有四个。这让我们更加焦急，于是就预约了社区儿科医生给她做一个全面的发育评估。
在某种程度上，我和Anna都预感到事情严重了。我们在交谈中提到了孤独症，但是我不想面对这个可能性。我根本就没去网上搜索。
见儿科医生是5月9号，刚好是大选之后。我们在一间灰暗的咨询室呆了一个半小时。医生对Yvette做了一系列测试，然后说她‘有可能’是孤独症。但是他强调说，他不是专家，Yvette这么小，很难做出确切的诊断。
我们的女儿将被推荐到地区的一个孤独症中心去做结论性评估，可是预约至少要排到六个月以后（真是岂有此理---对那些无钱享受私立医疗服务的家庭来说，很多公费的孤独症服务系统都是如此）。但是，儿科医生说关系不大，因为即使Yvette确实是孤独症，能做的也只是语言治疗，而她现在已经在接受公费医疗系统提供的语言治疗了。
我和Anna带着悲伤和泪水离开了诊所，但并没有感到意外。从那天起，我拼命地阅读关于孤独症的一切信息资料，并且很快就意识到Yvette不是‘有可能’的问题。Yvette从来没有指过东西，从来没有玩过假想游戏，叫她的名字从来没有反应---这些都是孤独症的关键特征。
那么抓住我的手这一条呢？乍一看好像是与人互动，但它也可以是孤独症的一个特征。正常孩子学会通过交流---用语言或手指的方法---来得到他们想要的东西。而Yvette只是把我的手当成一个工具。
一些书里关于父母们得知孩子有孤独症后如何反应的描述，对我帮助不大。一般来说，父母们会有丧子的感觉，因为他们失去了他们本来以为是‘正常’的孩子。我不能代表别人，但是我自己没有这个感觉。像其他父母一样，我只是希望我的孩子们能够快乐。当两岁的Yvette自得其乐地‘嘚嘟’着或摆弄着一串钥匙时，她和我所见到的任何一个孩子一样是快乐的。
可是，她要是永远不会说话又会怎样？孤独症是无法治愈的。而目前我们从公费医疗系统能够获得的，只是几个小时的语言疗法。
去年春天我们研究了所有其他的疗法，包括据说有效的生物疗法。我们也做了一些尝试。但是只有一个疗法看来能够真正帮助Yvette进步，这就是应用行为分析疗法（Applied Behaviour Analysis）。
这个疗法需要一对一的强化训练，一周做40个小时，要做两年甚至更长的时间。ABA的使用已经有20多年的历史，有大量的证据表明它可以显著地促进孩子的成长。有些孩子提高得很快，他们甚至能在学校里表现得和正常孩子一样。
最初我们并没有把ABA作为主要的考虑，因为实施一个ABA项目太让人望而生畏了。做一年就需要三万英镑。虽说有的家庭得到了地方政府的资助，很多父母都是自掏腰包的。另外后勤也需要考虑。我和Anna都上班时，Yvette本来是交给保姆带的。如果给Yvette在家全天做ABA，谁来给她做午饭呢？肯定不可能是带她做ABA的老师，因为给老师付钱是让他们训练孩子，而不是照看孩子。
但是随着时间一天天过去，我们意识到语言疗法和鱼油不会产生什么效果。我们这才痛下决心：如果我们俩有一个人不工作，就可以上ABA项目。
Anna在伦敦金融区工作，挣的比我多。所以，去年七月当我和Anna在晚饭时第N次聊起Yvette将来的生活时，我说：‘我可以放弃我的工作’。12个月以前我还无法想象我会说出这样的话。
我仍然热爱每日电讯报的这份议会旁听记者的工作。但奇怪的是，我并没有为自己的决定感到痛苦。实际上，这个决心下得很容易。
以前，当我读到一些父母们说他们爱自己有残疾的孩子更甚于爱自己‘正常’的孩子时，我总是想，尽管如此，家里肯定还是更看重‘正常’的孩子的。现在想起来十分愧疚，我知道我完全错了。
人类呵护后代的欲望是强烈的。但是直到去年夏天，我才知道这种欲望会是如此之强大。我仍然怀有做一名记者的雄心大志。但是我意识到，我现在最最想要的，是让我的女儿开口说话。
我们带Yvette又去做了一个发育评估（自费）以确定她是否是孤独症（她是）。我们找到了一个专家帮我们建立了ABA训练项目（Esther Dontoh，英国儿童孤独症干预项目的专家）。之后，我提交了我的辞呈。我对同事们说，我要在家照看Yvette直到她上小学，也就是到2007年秋天。我没有要求也没有得到一个保留职位的承诺，但是我相信将来有机会的话，我一定能够重操旧业。
同事们都对我表示同情。一位我不很熟的女政治专栏作家找到我，说我做得很对。我含糊敷衍着说其实也没什么，因为Anna比我挣得多... ‘可是大多数男人决不会承认这一点的。’她说。我不知道事实是否如此，不过我还是很感激她的赞赏。
和我比较熟悉的一些议员们更是热情有加，不少还写信对我表示支持。当然，这种举动多少是出于礼貌，因为将来我还有可能写他们。另一方面，它也反映了一个现实，即分担内务的爸爸已经成了一种时尚。
我已经听腻了David Cameron和Gordon Brown（英国保守党领袖和英国现首相，两个人都有幼小的孩子---译者注）说他们如何夜里起来哄孩子。有意思的是，那些有小孩的女部长们似乎从来没觉得缺乏睡眠有什么值得炫耀的。
但是对有些议员来说，我的事也许触动了他们的某根神经。一位三十多岁的议员这样写道：‘我们能向你学的太多了，因为很多政治家都不能做到把家庭放在首位。’
与此同时，我必须了解如何实施ABA项目。其中的一个问题是要自己找老师。在我准备辞职期间，我们面试了十几个候选人---多数是学生---最后敲定了三个：一个是在校学生，一个是外国研究生，另一个是自己也有个孤独症孩子的母亲。干半天的工作我们付他们每人45英镑，一个整天付110英镑。
去年11月，就在我辞职之后，我们参加了Esther安排的三天的培训，学习一些最基本的技能。然后我们立即投入工作：四个成年人轮班，实施每天七个小时的强化训练。当时，Yvette能听懂并能说的词只有六个。
记者们常常说‘从人嘴里套话’---这是采访技巧的别称。现在这已经不是行话了，这是我训练三岁女儿的真实写照。
Yvette坐在小木桌前，我帮助她做各种练习。我们每次要学十几样新的技能，比如学习物体的名称。同样的练习我们做了一遍又一遍。
每个星期我一般干两个上午或者两个下午。从理论上讲，我可以一个人全包下来。但是这个工作重复性太强，我觉得这样我会疯掉的。说实话，假如我认为这些训练没有出效果的话，我可能早就放弃了。
然而几个星期后，效果开始出来了。就在圣诞节前，我听到Yvette说了一个将将能听懂的‘开门’。这可能是她第一次说出了带有一个动词和一个名词的短语。
又过了几个星期，她清晰地说出了‘Mummy’，而在此之前的几个月她一直说的是‘Muggy’。在Esther的一次后续培训课上，她从一数到了十，而我根本没有想到她居然知道数字。
全天在家还使我有可能给Yvette实施禁食面食的饮食调理，这似乎对改善她的注意力有所帮助。禁食对很多孤独症儿童都有类似效果。
今年五月，Yvette开始去幼儿园，每周只去一个上午。她基本上对其他的孩子不理不睬，根本没兴趣和他们交流。但是有一个男孩却总来找她玩。有一天他还说：‘Yvette是我的朋友’。
很多事都成了过眼烟云，唯有这件事使我感动不已。我清醒地知道，Yvette在社会上生存的能力将取决于别人是否能对她耐心、宽容、和慷慨大度，是否能不嘲笑和鄙视她。
这段时间里，Yvette在一些方面继续大踏步地前进。她能听懂100多个词汇和短语了。她的目光对视、注意力、以及模仿语言和动作的能力都有了极大的改善。我们一直鼓励她主动讲话，可是收效不大。她脑子里的软件还是有很大的问题。她不是不会说，而是不明白为什么要说。
写有关孤独症的文章有一个问题，那就是读者总是想知道一个结局。事实上结局是没有的。我们在做我们能做的一切，但是Yvette将来究竟会怎样我们心里一点谱也没有，就连专家们也不知道。我们现在甚至不知道她将来会上一个普通学校，还是只能上特殊学校。
她总的来说还是快乐的。只是，如果她无法和同龄人交流，我们不知道这快乐能持续多久。我仍然认为对做父母的来说，孩子的幸福和健康是最重要的。可是我也希望Yvette至少能告诉我们她是幸福和健康的。到目前为止，她还不能。
在过去的九个月里，Yvette并不是唯一有了变化的人。我也变得比以前更为感性和善于理家了。不用上班以后，我以为每天会有好几个小时属于自己的空闲时间。没想到实际上做饭、洗洗涮涮、收拾屋子占用了大量的时间。你要不是特别会偷点懒的话，那么全天在家的结果，就是你被无休无止的家务压得喘不过气来。
我终于明白了为什么当有人问起‘你整天在家都干些什么？’时，家庭主妇们会没有好气儿。倒不是因为这句话暗示了她们浪费时间，而是因为她们没法记得她们都干了些什么。
随着父亲角色的母性化，成千上万的男人们开始有了同样的体验。而对于我，这种体验只是来的比较突然而已。我不再是一个典型意义上的参与型爸爸。我实际上变成了一个妈妈。
对此我并不感到特别的兴奋。说实话，我更满足于做周末爸爸，更乐于回到议会大厦去工作。另外，我对有些留在家中的父母将一切功劳归于自己的做法也感到不大舒服。
正是因为Anna挣的钱足够家里的开销，我才有可能留在家里帮助Yvette。而我的妻子既没有得到知名专栏作家的赞扬，也没有收到内阁部长们亲手写的支持信。
假如多年之后我回顾这一段的经历，我不会说它是最激动人心的，也不会说它是最为劳累，最为艰难，或最让我绞尽脑汁的一段生活。我甚至不能说它是我一生中做的最有价值的事，因为我还不知道Yvette的将来究竟如何。
但是有一点是可以肯定的---它将是我做过的一件最值得做的事。
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发表于 2009-6-11 10:34:43
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