Sunday, December 31, 2006

Playing to my strength

What I'm good at is staying home, staying in, being there, being helpful, supportive, encouraging, stimulating (I hope) and sometimes challenging to those I'm with. I don't have, want, or seem to need much of a social life or many friends. I'm particularly good with our cared-for kids because I'm interested in them, nearly always there for them, a bit of a tease, and really quite silly.

I was always there for my own kids even when 'there' was not where my kids were - a matter of great sadness at the time which I never quite get over. My kids are now in their thirties and I'm there (here) for my grandchildren.

Thursday, December 28, 2006

What today?

The other day I decided I should join the Fellowship of Solitaries. No seriously. I also had another idea. To offer some time to spend with housebound people who might like to be read to by a real person rather than a talking book. I felt a glow of satisfaction at my sense of altruism.

Then a couple of hours later neither of these seemed quite such a good idea. So I abandoned them. At least for the time being.

Saturday, December 09, 2006

Same Difference

I am no more clear about what autism is than ever I was. I mostly feel that it isn't anything, that it isn't even an 'it' at all; just an agreed number of items ticked on a list of the kinds of difficulties that most of us have anyway.

Having become acquainted with one or two young sufferers, I am particularly struck by how similar they are to other members of their families who are not themselves reckoned to be autistic. Their problems seem to stem, not from how different they are, but how similar.

Wednesday, November 29, 2006

Thomas Merton

I found these words of his today, and they moved me.

“Contemplation cannot construct a new world by itself. Contemplation does not feed the hungry; if does not clothe the naked…and it does not return the sinner to peace, truth, and union with God. But… without contemplation we cannot understand the significance of the world in which we must act. Without contemplation we remain small, limited, divided, partial; we adhere to the insufficient, permanently united to our narrow group and its interests, losing sight of justice and charity, seized by the passions of the moment, and, finally, we betray Christ. Without contemplation, without the intimate, silent, secret pursuit of truth through love, our action loses itself in the world and becomes dangerous.”

Tuesday, November 28, 2006


An idea promoted last week by the Daily Telegraph was of a new club for people who are so proud that they haven't done things most other folk have, like seeing the Sound of Music, that they want to announce it to the world. The Society of People Who Have Never . . .

Before you too easily dismiss this as so much sanctimonious drivel, let me assure you that this is not necessarily the case. I myself, as one not given to sanctimony, and dwelling permanently far above the realms of drivel, have been known to list my 'nevers' with touching humility.

Never have I bought a lottery ticket, withdrawn cash from a machine, owned a microwave, carried a mobile phone, sent a text message, smoked pot or donated blood. Not because I believe any of the aforementioned is morally wrong or that not having done them makes me more acceptable to the great God above. I just haven't got around to or wanted to do them. One day I might. But then again I might not. The reason they are on my list is that they are things that most people, as far as I can tell, have done.

I think it's about who we are, and how we define ourselves. It works the other way round, in terms of what we do and have done. For instance I have often thought that I must be one of a very small minority of vegetarian (I count this as a positive) Anglican priests, who read the Guardian, vote Labour, support Israel, and follow my local Speedway team, the Belle Vue Aces.

Not that I want to start a club or form a society. Like Groucho Marx, I don't want to belong to any group that would have people like me as a member.

Making Kendal Smile

Not, as you might think, a Cumbrian local council initiative for the forthcoming festive season. It's one of Stephen Jacobs' interests, listed in his CV for Society Guardian.

Kendal is the name of his foster grandson. It made me aware of how much of my time is spent trying to raise a smile on children's faces - and not just children.

Monday, November 27, 2006

Attention deficit

Stewart Dakers in a recent Society Guardian article (November 22) offers some useful observations about certain kinds of children in need.

Among them is Harry. Harry needs someone to help him cope with his mum who keeps cutting herself. Then there's Del, who thinks that it's his fault that his father smacks his mother, and tries to get his dad to hit him instead. Others include Lee, who needs an assessment for a statement of special educational needs, Joleen, who can't understand why her mum, who has nasty breath and gross legs, causes her so much shame, and Chardonnay, who isn't even born yet, but is suffering from the effects of the things her mum is taking to relieve the pains of pregnancy, not least that her partner finds her less attractive and is therefore boning her best mate.

"none of this lot got anything out of Children In Need. Kids like this are not easy-fix material. They are not sexy. The Celebrity Get Me Into Here egofest of the charity calendar simply does not connect. Not in the way it's meant to.
These kids are all victims of institutional adult attention deficit. Like Wayne - sorry, just one more - an angry young man because he doesn't get any attention and never has. On the few occasions his parents play with him, they look well glum until someone calls them on the mobile, and then their faces light up. They don't seem to have time for him.
Something's familiar, right? His mum and dad sound just a tad like ... exactly, all those self-regarding entertainers strutting their self-promoting stuff, their egotism and ambition obliging them to undertake a lifestyle in which attention to self radically reduces attendance on others, including family.
Children have one need above all: attention. Attention deficit is an adult incompetency, a flaw in a culture that views children as commodities - "pass the parcel" kids shuffled between separated parents, designer babies to complement the Jacuzzi, therapeutic Tamagotchis to repair relationships, cradle-candy for the fanzines, pirated "treasures" to create the ideal "rainbow" family. These are victims of institutional child abuse, and it is not a postcode problem. Single parent or double income, council flat or suburban ranch, social housing or stately home, on benefit or on a roll, all produce their share of children in need.
So next year, let's make it Grown-ups In Need: competition between CEOs trying to fill in benefit application forms; the Price Is High, in which Whitehall mandarins guess the cost of clothes; Question Time, with ministers tested on their knowledge of the systems they run; the Weakest Link, with celebrities eliminated on the basis of the time they spent with their children in the previous week.
It could have the phone-in format, with a scoreboard, but instead of money being counted it would be unanswered letters of application, delayed appeal hearings or frustrated welfare visits.
It would be the same show, with the spotlight on those who direct the damage and ration the care. Network the victims with the abusers, confront those who supervise the pain with those who experience it. Generate some bloody anger. Put childcare on trial. It would be extraordinary TV, and might just make a real difference to Wayne, Harry, Chardonnay, Del, Lee and Joleen."

Wednesday, October 25, 2006

When your number's up

We've just heard from a friend of ours that her husband has a ninety per cent chance of being cancer-free after a course of radio- and chemotherapy. He was recently diagnosed as suffering from prostate cancer. I wonder what it really means? - to have a ninety per cent chance? Ninety per cent of what? The only thing that's hundred per cent certain (apart from taxes) is death. Does that mean he's more likely to die than recover, or recover than die, or recover then die?

And does the ninety per cent take into account his life expectancy anyway? He's sixty-one. Is he more likely to die of old age or something else before he recovers from this particular illness?

Percentages cannot be applied comfortably, let alone accurately, to human life. We acknowledge this implicitly by omitting in a case like this any consideration of a wife's committment to her husband's survival. If asked, she might reply that it is one hundred and ten per cent! So much for mathematics.

Tuesday, October 24, 2006

Not such great expectations

Sadly it isn't always that expectations are pitched too high. If so then at least the more able children would be fully extended. In our experience this is not so.

A third child we look after is a boy now seven. When he first came to visit us three years ago, his behaviour was at times that of a feral child. Every boundary that was set for him he would simply charge down. Always he was running away; escaping, through doors, over walls and fences, out of bed, down the stairs. Gradually, as we grew in confidence in our handling of him, he came to trust us sufficiently to accept the boundaries we set for him. As a consequence, his time with us now (one sleep-over a week from school, and one weekend a month) is eagerly looked forward to both by him and us, and passes much too quickly. In fact we have lately begun to invite another boy to come for tea and play for a while. It's amusing to see the first child giving the other one the benefit of his experience when it comes to "the way we do things here".

The pity is that throughout the past two years of his considerable progress here, the boy's mum has continued to report the same unruly behaviour when he is at home. We have tried to pass on such simple wisdom as we possess, around matters like bedtime routine, but what this boy needs is consistency. Above all he needs to know that attrition will not always get him what he wants. For too long his mum, even with professional support, has not felt able to deliver this, although at last we are beginning to see more hopeful signs.

The greater disappointment we feel is with his school. He goes to the same special school as the nine-year-old girl but is far more advanced in his ability to socialise and communicate. We have sought to give him structure for his speech and to encourage the use of sentences. We have read with him and taught him rhymes and songs. Yet, presumably because this is not being sufficiently reinforced at school, he quickly lapses into single-word, baby language. At times he regresses so much that he is barely able to achieve the level of sentence-making and pronunciation he had reached two years ago.

A great deal of time and money is being expended through social and educational services, on each of the children I've described. But how can we optimize the advances they make?

Sunday, October 22, 2006

Biting off more than she can chew

Good news about the little boy in my last posting. We have heard from his physiotherapist. She has arranged to visit him while he's with us.

Another child, a girl aged nine, also has a diagnosis of autism. She goes to a special school and once a week comes home to us on the school bus. She then sleeps over so as to give her mum and brother a much needed break. Her intelligence and ways of communicating are very specialised. More than anything she needs to feel safe and moderately understood. Hilary and I have discovered slowly where her particular wavelength is, and how to get on it. We do wonder though how some of the experiences offered to her in school can possibly be constructive.

To take one example again, it is hardly likely that she would find a visit she made recently to a local mosque the least bit meaningful. Her understanding of her own family's Christian faith is typified by her description of a crucifix as 'Jesus' on 'a cross', feeling 'sad'. Now to stretch her religious knowledge within the familiar setting of her native faith is one thing, but to challenge her powers of comprehension by introducing her to other religions is surely a case of biting off more than she can possibly chew.

Friday, October 06, 2006

Back again

Back from a short holiday, I'm hoping to give more thought to where this blog is going and what it's for.

Part of my life is spent looking after children with learning disabilities who have been placed on the autistic spectrum. So I'd like to devote some of my blog to them, to what I believe we can learn from them, and how best to help them and their parents. Today, for instance, Hilary (my wife) and I attended a review at the home of one of them, a boy aged two. He comes to us once or twice a week and usually stays the night. He has a rare neurological condition which afflicts him with, sometimes frequent, epileptic fits. His arms and legs are quite floppy but his back and trunk are strong and firm. He struggles for movement as much as he can, sits up, and tries to crawl.

It seems to me that, like many children with puzzling disabilities, he is being let down in quite basic and practical ways by the way we provide social care. One of the concerns I raised at today's meeting is that little is being done to exercise and develop the muscles that he does not instinctively use. Physical therapy on some of the more floppy parts of his body might help him to discover a use for them that his condition is obscuring. In spite of a good attendance at the meeting of social and health workers, together with his parents and three volunteer carers, it appears that physiotherapy, though requested, has not so far been accessed. We are all doing our best, but our best isn't good enough - for him. His parents are very committed to caring for him and the way he relates and responds to his mother would melt the coldest heart. But it's as if the power exercised by the state somehow disempowers these parents. They are actually lulled into a kind of abdication of responsibility for their own child, whilst a good-enough parent with a bit of power to command the resources that might help him is probably all that he needs to guarantee meaningful progress.

Monday, September 11, 2006

Not being dead

"Which of those cooks? - y'know the two fat ladies - which of them gave the cookery demonstration in Edinburgh a few weeks ago?" I enquired.
"The one who isn't dead", my wife replied.
"Which one is that?" I persisted.
"Clarissa Dickson-Wright" she confirmed.
Obvious, when you come to think of it. Not her name. That's a bit fancy. I mean her not being dead. It's a prerequisite for most things - certainly for cookery demonstrations - that you're not yet dead.
Being dead has its place of course - a 'final resting' place. So when people say, "We're all going to the same place," they're kind of right. We are all going to be dead one day - the day after our last.
Death is where we finish up, but it's also where we come from. Out of all those millions of spermatozoa, one survives. Millions die - and one survives. Not being dead is the exception - the single exception.

Friday, September 08, 2006

A Unique Nonentity

I think of myself as a resting, lapsed, recovering Christian, of an Anglican kind. In fact I'm an ordained priest, still trying to find a way of being a priest, a Christian, a human being, that doesn't mean I have to stop being me. Then, following on from my last blog, I have to learn what it means to be nothing in relation to God.

Being me and being nothing. A unique nonentity you might say. Tricky.

Sunday, September 03, 2006

God as Nothing

How sad to hear of the death of D. Z. Phillips. I'm not sure how I first came to know of him. It might have been through a series of talks he gave on Radio Four based on essays that were later published as 'From Fantasy to Faith'. Over many years I have found his account of religious belief a model of philosophy. As a follower of Wittgenstein he investigates religious belief, leaving everything as it is. In a world where popular religion can so easily be dismissed by thoughtful people, and fanatical religion by decent people, DZ was not a reformer. His work was not in making religion more modern, more relevant, more liberal, or more humane. It was rather in seeking a better understanding of religious reality itself. He reflected sensitively on the sense in which God is experienced as absent, indeed as Nothing. He taught that we cannot understand belief in God without understanding what it means to become nothing before him.
It may be possible as I go along here to unpack some of DZ's ideas that I have found most valuable. I'll try.

Tuesday, August 29, 2006

An ecumenical matter

As Father Jack would call it. I went to a christening on Sunday in a Roman Catholic Church. One of the godmothers was Jewish. Seeing that neither of the child's parents was RC of a kind that Benedict XVI would find acceptable, it didn't seem to matter.

Over refreshments in the local public hall, I half-apologized to the said godmother for not wearing my pro-Israel badge. Actually I don't have one, but if I did I would wear it with conviction. She was dumbfounded, and incredibly, even embarrassingly, grateful for my support. I told her I'd feel the same way about any small liberal democracy seeking to defend itself against violently hostile neighbours.

She was appalled at the ignorance and prejudice of so many British people who blamed Israel for the recent conflict, and described the sinking feeling she usually got when meeting friends who verbally abused her homeland without regard for her own patriotic feelings.

It must have been like the feeling I had minutes later when she expressed her disgust at lesbian sexuality. I am the father of a daughter who counts herself a member of that sisterhood.

One thing I really envy about followers of Judaism is that they have a religion that ends in 'ISH'. Now that I like. It's so nicely vague. Jew-ish. It makes me want to come out as christ-ish, social-ish, anarch-ish, individual-ish, human-ish. Great idea!

Thursday, August 24, 2006

Off in a motor-car

We're off. We're off. We're off in a motor-car.
Fifty cops are after us, and they don't know where we are.

This is what we sang as we set off on the most exciting journeys of our childhood - by chara(banc) from Manchester to Blackpool. The words and music are in my mind as I begin this new and much later journey. Not now as free, or perhaps quite as excited, as then, but, I hope, not too careful or correct, and with enough enthusiasm to draw others into the conversation.

What kind of vehicle a blog is, where and how far we might travel in it, its possibilities and its limitations, are I suppose some of the questions that the world is beginning to answer, to which we will add our own experiences, both good and not so good.

Welcome aboard!