Isn't She Talking Yet? - Times Online - WBLG

That bill

There's been so much in the papers about the Human Fertilisation and Embryology Bill  that I'm sure you've  read all about it. No one loves the idea of human-animal hybrids, obviously, but it's hardly like we're talking about creating living children who are half kangaroo - we're talking  about using "empty" eggs from rabbits or cows with genetic material from humans inserted into them. The animal component of the resulting embryo, which would be destroyed after 14 days, is about 0.1%. The Telegraph has a For and Against debate here. The Times has an excellent Q & A here.
 

The Catholic church  has got its knickers in an almighty twist about this, as well it might since Catholics believe the soul is born at the moment of fertilisation. The church isn't mad keen on the idea of "saviour siblings", either - embryos created to donate tissue or bone marrow. ("Saviour siblings" is a bit of an emotive misnomer - we're talking about embryos that would exist for a fortnight, not about living children that would be creepily harvested of their health).

The thing is, nobody's mad keen: nobody thinks, 'Oh yes, really charming and appetising idea, and what's extra marvellous is that there are no ethical questions about any of this whatsoever'. The point is combating or alleviating or even removing disease. And it's all very well to say you want Nature or God to do whatever Nature or God does, without interference, but that rather discounts, er, the whole purpose of medicine and science. I'd be dead, for instance, or my children would be, since Nature or God wanted me to have a narrow pelvis and thus not be able to give birth "naturally". If your kids have special needs and receive treatment, they'd be dead too.

I don't think the church has any business poking its beak into medicine, actually (and I am Catholic myself).  I was talking about this with my GP, who is also Catholic, a propos a Catholic charity in London that helps homeless people and which he does work for. The GP said: "If a 15 year old girl who lives on the street and has been raped twice already comes to me and asks me for the Pill, who am I to refuse? If she falls pregnant and ask to be referred for an abortion, who am I to say 'No, have the baby and raise it in a doorway'? It's a matter for my conscience, not a matter for doctrine.". I don't understand how anybody - or any body, including a supposedly charitable religious one - could take issue with this.

Here's a column by Polly Toynbee about what constitutes a moral issue in politics. Here's David Aaronovitch on "wicked untruths" from the church. This entry from our Faith Central blog is worth a look. There's masses more on this all over the place via Google. And it's just been announced that Gordon Brown will give Labour MPs a free vote re the trickier bits of the proposed legislation, i.e. mixed embryos, 'saviour siblings' and IVF.

Please send Jasmine to Disneyland

Jasmine Beedles is five years old and has DiGeorge syndrome, which in her case affects her heart, lungs and bowel. Her parents, Sam and Ben (who are friends of another DiGeorge parent I know and who contacted me about this), have been told she doesn't have long to live because her heart, which is in the wrong place, is failing and can no longer be 'fixed'. "We have to go back to the hospital next week to do an end of life plan, which we are both dreading," Jasmine's mother told her local newspaper .

What Jasmine really wants to do is go to Disneyland (she's pictured on her first visit) one more time to celebrate her sixth birthday in June, but it's expensive and her parents are not well off. 

"Jasmine kept asking to stay in the Pink Hotel when we were there, but when we priced this up it is going to cost £5,000 because we need to take two carers. We are looking to raise this money for her, as it will be her last holiday and we want to make it as special as possible, because she deserves it," Jasmine's mother said.

I can't bear it. Jasmine's mother is anxious not to be seen as "scrounging for money", but let's just ignore that. You can send a cheque (made out to Ben Beedles) via the the journalist who wrote the story I've linked to above -- Stephen Mather, smather@cheshire.newsquest.co.uk at the St Helen's Star, 23a Hardshaw Street, St Helens, Merseyside. WA10 1RT; or you can send one  directly to Jasmine's dad, Ben Beedles, 21 Walkers Lane, Sutton Manor, St Helen's, Merseyside, WA9 4DX.

I wouldn't normally do this - there are charities such as the Make A Wish Foundation who specialise in this kind of thing, but frankly time is of the essence, plus I got a letter this morning which made me cry, from the mother of a child with DiGeorge who died last year, aged 41, because the relevant surgery wasn't available when she was little, so DiGeorge and mortality are on my mind. And now I'm off to count my blessings. 

More on Thomas the Tank Engine and autism

I've posted about autism and trains before, but am indebted to Moondog from the excellent special needs board of Mumsnet (which I was following re. Julia Hollander) for posting this link, from the National Austistic Society, about why kids with autism love Thomas. I rather vaguely thought it was all to do with systems, but the page in question is much more specific about Thomas's appeal, and why it occurs. It's extremely interesting.

Needless to say, zillions of little boys love Thomas devotedly, and it doesn't mean they're on the spectrum - I don't want anyone to read this and worry needlessly. But a health professional once told me they used Thomas as a non-official diagnostic tool, and I've been interested in this ever since, especially since it bore out what I'd observed myself a couple of times. (Picture is of Thomas at Tenterden station last year - alas, he was only visiting).

'The right to be deaf'

A deaf artist who rejoices in the name of Tomato Lichy  - crazy name, crazy guy - was on the Today programme on Monday, talking about "the right to be deaf". You can listen to the item via Today's website. This is on the back of a new bill going through parliament which would screen out deaf embryos in relation to IVF. Here is an earlier interview with Mr Lichy, in which he expresses delight at his daughter being born deaf. Many deaf activists refute the notion that deafness is a disability. The movement known as Deaf Culture  - 'we have a language, ergo we have a culture', the language being BSL or ASL - sees deafness as being merely a difference, like being black, or gay.

Three comment pieces about this today: one from Dominic Lawson in The Independent, who says that obviously deaf couples want deaf children, and which you can read here; one from Andrew O'Hagan in the Telegraph, who says that deafness is a "gift" children can do without, and which is here; and one from Cathy Heffernan in The Guardian, about the hearing's attitude to the deaf, which is here.

Oops, one more: Daniel Finkelstein in the Times - he thinks that "choosing a deaf baby is criminal" - is here.

Update: this was the  topic on  Radio 4's The Moral Maze this week - you can listen again via the prog's website. The discussion moved on to special needs generally (in relation to screening, genetics, "impaired" embryos and medical advances) and is really, really interesting - do listen if you can.

All of this reminds me of hearing the brilliant actor Richard Griffiths on Desert Island Discs last year (I think), talking about his silent childhood - both his parents were deaf and he learned to sign when he was very young in order to communicate with them. Would his parents, if they'd had the opportunity, have preferred him to have been deaf? And, rather more crucially, would he?
 

Cosmetic surgery for Down's

UPDATE 17 MARCH:

The Kirwans have each issued statements completely refuting this Daily Mail story, plus another that appeared in the Mail on Sunday. You can read them here. Dr Kirwan also wrote me an email, in  which he said: "This article by Amanda Cable infers that she had an interview with us prior to writing the March 10 piece. Neither I nor Chelsea has ever spoken to Amanda Cable. We never stated or implied the title.

"Ophelia is reported as living in Knightsbridge whereas the Mail commissioned her  photographs at her home in Greenwich, Connecticut, USA. [..] We have never recommended or even considered cosmetic surgery for Ophelia. We are far more interested in her health, as well as her physical and mental development. Of course we love Ophelia as she is.

"The decision to have surgery on a child with congenital anomalies is a complex one taken between the parents and their surgeon. We should leave that decision to the individual family and their medical advisors to decide on its own merits. Reconstructive surgery for congenital anomalies of all kinds has improved the quality of life of millions of children. As a plastic surgeon I have spent my life correcting congenital deformities in the USA and in Third World countries, as part of charitable missions

"Please take the time to read our comments on Ophelia's website  as well as her diary which documents Ophelia's progress over the last 2 years and our emotions during that period.

"Lastly, Chelsea and I were assured that this was a mother daughter article for Mother's Day without any mention of me or plastic surgery. If we had known otherwise we would never have been a party to this shameful article which is a disservice to all individuals with disabilities and to the Down syndrome community in particular. We have always championed research into Down syndrome and that is why in the original article of March 2, Bonnie Estridge gives the names of the charities we support. Neither charity has any interest in cosmetic surgery but is primarily concerned with developmental progress and quality of life issues."

MY ORIGINAL POST READ:

I'm like a bus - no posts for ages and then loads come along at once. Anyway. Thanks to Jenny for sending me this article from the Daily Mail, about Chelsea Kirwan, a woman who thinks her daughter Ophelia, who has Down's, might benefit from plastic surgery when she is older, to minimise her characteristic Down's appearance (both are pictured).

It's all a bit speculative, since Ophelia is two and her parents wouldn't countenance surgery until she was 18, but it's an interesting subject and I'd like to know what you think of cosmetic surgery if your child has a "visible difference".

I'm not entirely against minor procedures - the removing of an extra digit, say, or the "correcting" of a droopy eyelid - but I find the pretence involved in major, face-altering  surgery pretty weird: the end result is to pretend a child doesn't have Down's (or whatever), when he or she just  does. What is the point? Who's being fooled? Do we not want our children to be accepted for what they are, rather than be temporarily accepted because they're in disguise - and then, horribly, possibly rejected when the truth comes out?

Or is this splitting hairs, and does being in favour of pinning back ears mean there's no argument against more invasive, complex surgery (and its attendant risks)? 

"Where pro-choice feminism collides with disability rights"

Here is a very good, thoughtful article from today's Guardian. It is by Rebecca Atkinson, who has Usher syndrome  (she is deaf and is losing her sight). Atkinson is pregnant and explains why she has not had her unborn baby tested for Down's. The piece, which is here, touches on the prickly subject of being pro-choice but not "believing" in aborting foetuses with special needs. (I'm phrasing this very weirdly. "Foetuses with special needs" sounds mad. Sorry. Am rushing). Pic of Atkinson nicked from the Guardian website.

Julia Hollander part 2 (see below first)

I wrote my column about this this week and am reproducing it below. See the web page for more comments.

From The Sunday Times

March 9, 2008

Brave to give up a baby? Never

India Knight

As I was saying last week, becoming a parent can be a scary business. If the child you produce has a disability, “scary” doesn’t begin to cover it. You can add terror, panic, an overwhelming sense of injustice (“why me?”), rage, grief, incomprehension and a sense of bereavement because you mourn the “normal” child you thought you would have even as you get on with everyday life.

This doesn’t make anyone saintly – the perception that parents of disabled children are somehow as “special” as their offspring is an irritating one: you don’t get a personality transplant, nor does the person you have been until the day your child is born somehow vanish overnight to be replaced by a Mother Teresa/Florence Nightingale combo. Parents of disabled children are as normally human as anybody else. We are not saints. But are some of us sinners?

Julia Hollander, 43, an educated, middle-class opera director who describes herself as “a capable, gutsy woman”, found being the parent of a disabled child unbearable. When her daughter Imogen was born brain-damaged four years ago, she could cope with her for only a few months.

Imogen communicated by screaming and, exhausted and overwhelmed, Hollander found herself wishing that her longed-for second daughter would disappear. Imogen’s father, a bearded charmer called Jay Arden, started sleeping in another room and eating meals separately.

Hollander has written: “One night, rocking Immie’s angry little body back and forth, I felt myself swing just a little bit further. This is what it would feel like if I were to smash her head against the wall. It would be so simple: her soft skull would crush like a boiled egg . . . It is too horrible, the ease with which I can imagine destroying my child.”

She felt irritation that Imogen wouldn’t - or more accurately couldn’t - smile at 12 weeks old. Told that Imogen was probably permanently brain-damaged, Hollander stopped breast-feeding her: “I needed not to be needed any more.” When Imogen was three months, her mother told the health visitor: “I feel like I’m looking after an animal.” She asked for help from social services and was told they’d act only if they believed the child to be in danger.

“She is,” Hollander said and she wasn’t wrong: aside from her head-smashing fantasies, Imogen’s father had wondered out loud about suffocating his child with a pillow (“he said he wished she would die a cot death. I said maybe she would. But no, he said, she was strong - that was how she’d managed to survive her terrible birth. If we wanted her to die now, she would need help”).

When the severity of the brain damage was confirmed by a neurologist - “Strictly speaking, she has no intelligence,” the consultant said - Hollander felt unable to continue visiting her daughter in hospital or to collect her when she was allowed home. She and Arden gathered all of Imogen’s things - the cot, the steriliser, the high chair - “and Jay drove them to the dump”. When Elinor, the couple’s other child, came home from school, there was no evidence Imogen had existed (I’m hoping her parents have started a therapy fund for Elinor).

Social services placed Imogen, then five months old, in the care of a foster mother called Tania Beale, then 30 and caring for an older disabled girl. And there Imogen remains. Hollander and Arden are married and have another, healthy daughter; Hollander sees Imogen once a fortnight. Beale is to be made Imogen’s legal guardian.

“Sometimes I think of myself not as Immie’s mother at all. I could simply be the means by which Tania’s child came into the world,” Hollander writes in her new book which gives a bold - some might say off-the-scale shameless - new spin to the misery memoir genre.

Interviewed some years ago, Beale said: “We all have different skills. If parents can’t cope with a child, the most loving thing they can do is make sure the child is cared for by someone who can.”

I cannot get this story out of my head; I’ve dreamt about it. Even though every iota of my being feels intense repulsion towards Imogen’s parents’ actions, as the mother of a disabled child myself, I understand - or try to - how important it is not to sit in judgment. What matters is the child’s welfare and quality of life and Imogen is now loved and cared for.

Hollander was clearly traumatised by Imogen’s arrival; she was also clearly grieving, a common reaction, as is wishing that the child would somehow go away (most people nebulously wish for painless means of achieving this, not for DIY infanticide, but anyway). Of course some people can’t cope: there was the elderly woman last year who killed herself after decades of single-handedly looking after her disabled son, or the father a few years back who admitted to “mercy killing” his. But Hollander gave her baby all of five months.

It behoves nobody to kick people when they’re down; and in my opinion Hollander is a person in pain seeking public atonement by using “honesty” as a bogus and self-deluded way of achieving it. She is promoting her book, making money and garnering idiotically misplaced media sympathy for her “bravery” and “honesty” from people who haven’t a clue what they’re talking about and care more about the “rights” of women to feel joyous at all times than about pathetically vulnerable babies. Hollander has returned to her arty middle-class lifestyle in leafy Oxfordshire with her other “normal”, photogenic children.

That is her choice but to present it as being in any way “brave” is insane. It is selfish and self-serving and monstrous. Bravery is picking yourself up and getting on with it; bravery is the lioness instinct to defend your vulnerable child with your life – and, if needs be, your sanity. Bravery is dumping the loser husband who’s taken to eating separately because he can’t cope. Bravery isn’t pretending that the inconvenient truth never happened.

Tens of thousands of women (and men) go through their lives as parents of disabled children in a heroic way, every day, without bleating and without the benefits of a comfortable home, a book advance and a sympathetic media.

It’s not a fashionable thing to say but motherhood is about sacrifice and duty. It’s about understanding that you will no longer be able to put yourself first and understanding that there isn’t a personality type that “copes” with difficulty or disability better than anyone else.

We’re all muddling through as best we can; our reward is anything from a hug from a “normal” child to the painstaking ghost of a smile from the immobile face of one who is not. Anyone who feels unable to grasp this should get their tubes tied, pronto. And Hollander should give up writing books, stop pretending that everything’s fine and get the help she so clearly needs.

"I had to give my baby away" because she was disabled

Sorry about not posting for ages. I'm back, and this one is a real humdinger.

Thanks to those of you who wrote to tell me about Julia Hollander. Her second daughter, Imogen, was born very badly brain damaged, and by the time she was five months old, it was all a bit much, really, for her mother.

So she told social services that Imogen was in danger, and that one night, after Imogen's incessant crying, her mother had thought about smashing the child's head against the wall. Social services asked if Ms Hollander wanted someone else to look after Imogen. She said yes.

Imogen was immediately placed in the foster care of one Tania Beale, a 30 year old who was already caring for an older disabled child. And there Imogen, now four,  remains. Her mother has remarried and had another child and is getting on with her uncomplicated life.  So that's nice. She sees Imogen once a fortnight.

You can read the story and an old interview in the Telegraph, here and an extract from Ms Hollander's book on the story (because naturally you give away your disabled baby and write a book about it  -  what could be classier?) from the Mail here. Ms Hollander was also on Woman's Hour; you can listen to the item here. There is a piece from Families section of The Guardian here.  There is a new piece in the Telegraph (Monday March 10) here. 

What I really want to know is what you think: is the woman an utter monster, or is she just strikingly honest and oddly brave? The latter seems to be the view the media is taking. It is not one that is shared by parents of disabled children over on Mumsnet's special needs board, or by the parent of a disabled child who emailed me and imagined Ms Hollander's thought process thus: "It was too hard and all a bit icky and not part of my lifestyle, and I'd rather stay with my bearded boyf and have another NT kid instead".

Tania Beale, Imogen's carer said: ""We all have different skills. I couldn't work in an office. If parents can't cope with a child, the most loving thing they can do is make sure the child is cared for by someone who can." 

Is it?

Tania, Imogen's carer, has a blog called Behind the Child. You can access it here. Her take on, and response to,  all of this is here.

Nell's episode of Something Special

is on CBeebies tomorrow, Thursday 17th, at 9am and again at 12. Here's a screen-grab (quite brave, to go on a big wheel with a film crew and Justin - if I were three, I might have resisted).

Czech "care" homes

I'm watching the news and I feel completely sickened, also furious. The BBC had just showed a report secretly filmed in the Czech Republic showing disabled children kept in "cage beds" - beds with high bars around them - in care homes. This practice was outlawed there a year ago (yes, one year) - and only because the EU complained - but is still, according to the BBC, prevalent. The relevant minister has grudgingly agreed to look into the BBC's report and mumbled something to the effect that Rome wasn't built in a day. You can read a report on the BBC's website, here. It is incredibly depressing. There's a Q&A about cage beds here.

I would like to know why a country which flouts the European Convention on Human Rights in this vile and disgraceful way is a member of the European Union. Ditto Bulgaria, with its grotesque "orphanages".

EDITED TO ADD: I don't understand why this whole subject has completely passed me by (finger on the pulse, obviously), given that it was given huge publicity by JK Rowling, who was so appalled by a 2004 Times article on the use of cage beds that she became one of the founding directors of a charity called the Children's High Level Group, which campaigns for children's human rights. Lots of this, plus details on how to join the campaign, on JK Rowling's own website, which is here.

"Mute" four-year-old talks to animals

Really intriguing story from today's Daily Mail - you can read it in full here - about Rose Willcocks, who is four and has"an extremely unusual genetic condition" because of  "a chromosome defect which has left her with a floppy voicebox and windpipe" (what is this? does she have 22q? I wish it said). She's never uttered a word, but then she met some animals as part of her therapy and happily chats away to them. "We had never heard Rose vocalise before and we were overjoyed," her mother said. "Her affinity with animals amazes everyone. She changes from an introvert into a chatterbox."

Do please check out

the Comments bit of the entry titled 'Nell, and how this blog began' - it's here (warning: contains picture of very intubated post-surgery Nell) - as several people have posted their stories of how they woke up one morning and were suddenly in Special Needs World. I feel bad not to have replied to these people - I will, eventually - but as I hope you all appreciate, it's often really emotive, traumatic stuff, and so I feel I need to reply properly rather than write a cheery 'hello and welcome'.

But anyway - I may be particularly time-poor at the moment but hopefully some of you will have time to read the posts in question and make the people who wrote them feel welcome, and/or reply to any queries they may have regarding their child's particular condition. Thank you!

Interesting article about Down's and lowered cancer risk

Thanks very much to Sharon for sending it to me. You can read the article here.

Genetic fix 'corrects Fragile X'

I keep meaning to post this story, from the BBC's website, about scientists at MIT successfully tweaking a gene in mice which showed many of the symptoms of Fragile X . Read it in full here.

We're on Something Special,

which I call pretty damned exciting. Well, I say "we" - I mean Nell (see pic), though her father and I also appear, grinning so dementedly at all times  that we look like we've been mainlining cocaine for days in preparation. The episode is called Funfair - the new series of the programme is out and about on location, rather than studio-based - and will be broadcast next month. I'll update this when I have the actual transmission date.

UPDATE: It's January 17th at I think 9am and 12 noon, but do double-check.

Some random observations: a) everyone involved in making the programme is practically a saint; b) Justin Fletcher is the world's kindest man, even when mobbed by children every thirty seconds while trying to work; c) Nell is the youngest child ever to have taken part in the programme, which makes me feel all proud (also, every time I watch our preview DVD, I cry. I haven't cried as much since that ad for Yellow Pages where the ancient old gardener thinks he's about to be sacked but instead gets a new ride-on lawnmower).

Skating in wheelchairs

Thanks to Elaine for her email about the ice rink at Kew Gardens. "I went ice-skating at Kew Gardens yesterday with my kids", she writes, "and happily shared the ice with three kids in wheelchairs who were being pushed energetically (and at high speed) around by the ice stewards. The kids were having the best time, and were joining in with everyone else....I never knew this facility existed and I assume it wasn't a one-off".

I didn't know about this either - how cool. If you're in London and your child is in a wheechair, get yourselves to Kew. (There are also ice rinks at Somerset House, the National History Museum, and various other locations - here's a link to them all).

Men of the cloth and men in white coats

Nearly Christmas, and my thoughts turn to charitable behaviour. We are looking at our local schools at the moment and the one we have identified as best serving Nell's needs - we can walk to it, it's small, it's friendly, loads of children she hangs out with go there already - happens to be a church school. Wrong denomination, but never mind - not a problem for us, and besides, it's a church school, so they're bound to be kind and understanding, in the circs: we're talking about a child with a severe problem.

Now, I make the (clearly insanely naive) assumption that churches aren't mad keen on hypocrisy. If I were a vicar, or a priest, an an imam, or a rabbi, I would want people to come to my church/mosque/temple because they wanted to be there, not because they wanted me to sign a piece of paper fast-forwarding them to a particular school. Right? Wrong. It's all about bums on seats - so if you want a place at, for instance, a C of E school, and you happen to be Catholic (or Muslim, or Jewish, or Buddhist, or whatever), you still have to sit there pretending you have no ulterior motives whatsoever. It's grotesque, actually - here is a child with severe difficulties, but the Christian church school will only consider her application if her parents pretend to be something they're not. I find this - well, I could rant for miles about what I find this, but let's just say morally dubious and leave it at that, for now.

Cue, slight despair. But who's this, riding to the rescue, displaying true charity? The lady from the council,  rather unexpectedly, followed by doctors. Lots of them, all underpaid and over-busy, but more than willing to write any number of letters to support our case - and all of them displaying a degree of compassion that is missing where you might most expect to find it. If the debate on faith vs science hinged on human decency alone, I'd be strongly inclined to come down on the side of science - not something I'd have said ten years ago.

Oh, and if you're wondering why none of this is over-ridden by us having a statement: it's because Nell has been observed and found to be "very well adjusted", and never mind that SHE CAN'T ACTUALLY TALK. I'm on the case, and that statement will be mine at some point, but at the moment we can't have one because our child is happy and well socialised. If she sat in a corner weeping and had stones thrown at her, no doubt the process would have started ages ago. I'm fortunate in that I have quite a well-developed rottweiler streak - I am extremely tenacious. But you can see how some people just give up, can't you?

If you think adult carers have it bad, think again

I’m not a sentimental person, and quite a lot leaves me disconcertingly dry-eyed, but reading about this year’s Sunday Times Christmas Appeal  – which I only did, belatedly,  this morning – means I am typing this with my eyelashes all clumped together with tears. The appeal this year is on behalf of young carers – children who do work no child should ever have to do, looking after their ill or disabled parents and/or siblings. Some of these children are tiny. None of them have what you or I would understand as a childhood. All of them really, really need help. They are pathetically young, from poor or deprived backgrounds, completely vulnerable, and often hug their grief and loneliness to themselves. Please read Caroline Scott’s absolutely fantastic article, which you can find in full by following the link below, but this is how it starts:

Four o'clock on a Monday evening, and a straggle of small children are trooping into the Carers Cottage, a restored council building on the edge of Howard Park, Kilmarnock. They've come for their weekly activity session, and for a couple of hours they'll play, do arts and crafts, and be given a hot meal, complete with tatties and vegetables ­ something most will not be getting at home. Some are absolutely tiny. Their hands disappear into their coat sleeves, and when they sit down on vinyl-covered benches, their feet barely scrape the floor. Despite the cheery yellow-and-blue decor and the comforting smell of cooking, this place feels starkly municipal. As if they might need reminding, a brightly painted mural above them shrieks: "Young carers just wanna have fun!" They look anxious and unsure of themselves until Jason, the centre's family support worker, wedges himself between two brothers, Sam and Luke. "So what yous all been doing over half term?" he asks. They shuffle about and say nothing. "That bad? No!" But it's a hard question because the answer for many is not much. All of these children have caring responsibilities at home way beyond their years. Their parents are ill or disabled or they've got a sibling with special needs who requires so much care that it impacts on the whole family. Sam and Luke's mum suffers from depression and their dad has multiple health problems, including chronic arthritis. He recently had a stroke, which means the boys and their two older brothers and sister take on a lot of responsibility. The centre managed to send them away for a week's break in a holiday cottage, donated by a local supporter. It was only four miles away, but there was a huge kitchen and chickens to feed, and it was a change for everybody from the chaotic conditions at home. "So, boys, what was the best bit?" Jason asks. Sam, 8, thinks about it. "There were beds with real lights you could turn on and off," he says, looking bemused.


Tonight, PC Fergie Grant has popped in to talk about graffiti and Asbos.

"Och no, they're never too young to start talking about crime," he says. But later concedes that perhaps they are. This group are all 8 to 10, and some of them are living in situations that make them very vulnerable. But when they stare at him with their round, baby faces, I don't think he has the heart to give them his drugs spiel. "What would you do if you saw someone doing something wrong?" he asks instead. "That's right! Tell your mummy." As he talks, Erin, 8, dressed in pink, with the sweetest face, traces a pattern with a finger on her skirt. Her brother, Finn, 10, stares at the floor.


After being cared for at home for months, their mummy died of breast cancer two weeks ago. PC Grant isn't to know, but I know, and my heart breaks for them.


Jane Smith, the centre manager of The Princess Royal Trust East Ayrshire Carers' Centre, began the young carers' group nine years ago with Laura Bennie. Then there were six children. Now four full-time and 10 part-time workers care for 400 children, aged from 5 to 21, at two centres, one here in Kilmarnock and one in Cumnock, 15 miles away, covering an area of 490 square miles. There are activities evenings every night for each age group, a total of 10 groups. Every time I see Jane, Jason, Lorna, who runs Kilmarnock, or Derek, who looks after Cumnock, they're carrying food. All the meals are cooked on the spot ­ soup, mince and potatoes ­ and they always overbuy, so the children who they know won't have much at home can take what's left away with them. Food is a big priority here, for everything it signifies: warmth, nurture, care. After Lorna got married in August, Jane laid on a mock wedding for all the children. Formal invitations were sent out, and Lorna, wearing an Oxfam dress, "married" wee William ­ a 10-year-old who looks after his disabled father ­ in the back garden with tables laid out, so everyone felt part of it. Jane cooked steak pie and mash and made sticky-toffee pudding and a cake. One of her absolute rules is that carers deserve the best. It's her way of caring for them. The children are never out of her mind. It's a standing joke that Jane cannot pass M&S without going in and buying pants. The office has enough pants, socks, T-shirts and jeans to clothe a primary school. And if she sees toothpaste reduced in Sainsbury's, she'll buy a basketful for distribution on respite breaks when children turn up with just the clothes they stand up in.


At Christmas there are parties for each age group, a huge dinner, and all the children and their brothers and sisters get a sack of presents. Parents who are ill often buy something from a catalogue ­ a pair of boots or a toy ­ but end up handing it over beforehand, so a child has nothing to open on the day. Many won't be getting Christmas dinner at home either; there'll be nothing to differentiate it from any other day. Jane tells a story about an eight-year-old girl, Kerry, who, when her mum was ill, regularly heaved her baby sisters up to the Foregate shopping centre in Kilmarnock in a double buggy. Kerry came to the young carers' Christmas party wearing a pair of thin leggings and a Mickey Mouse T-shirt she was very concerned about. It turned out it was her only Christmas present, and when she got home she had to wrap it up again for opening on Christmas Day. One of the few remaining pieces of furniture in the house was a highchair. Half the floorboards had been ripped up and burnt because there was no money for heating. Someone once criticised Jane for giving some children more than others. "Yes I do," she retorts. "I don't apologise for it either."

You'll no doubts have your own thoughts after reading that, but here are two of mine: 1) it is simply extraordinary that saintly and spirited people like Jane Smith and Laura Bernie should do this wonderful and important work and not have enough money to fund it properly; and 2) this is happening up the road, not in some Third World country where you sometimes feel that all the money in the world isn't going to help the problem, because the problem is of such epidemic proportions (which isn't to say you shouldn't donate money to Darfur as well, obviously). These are, in a  real sense, our children, and it is our collective responsibility to help them. You can do so here, and read Caroline Scott's brilliant article in full too.  I know newspapers stress everyone out around Christmas time by constantly demanding they put their hand in their pocket, and I know how  easy it is to think 'Oh dear, how sad' and turn the page.  But really, I defy anyone to read the Sunday Times article and not set up a standing order. If you need to be persuaded further, you can read 11-year-old  Lauren Mallins talking about what happened when the Sunday Times magazine ran her Life In The Day story earlier this year, which resulted in a flood of donations from our kind readers, here.  Lauren is just one child. There are thousands of others, going about their broken lives unheard, and uncomplaining.

You can watch videos of Christian Lunn (pictured with his mum above, left) and Lauren Mallins (pictured, right) talking about their lives by clicking on this link.

Once you've made your donation, you can read about how your money will be spent here. Thank you.

The Princess Royal Trust for Carers www.carers.org - and young carers, www.youngcarers.net

 

Update - Heat sticker

They're sorry - apparently they didn't mean to offend anyone.  Read a report here. Heat's apology is on their website.

Updated 1 December: read Janice Turner's excellent column about this in today's Times. Here's an extract:

"At least ten highly paid, clever people [saw the sticker], I'd guess, and not one queried whether mocking a child suffering from septo-optic dysplasia, which counts clinical obesity among its lesser symptoms, was a hilarious idea. “It was never our aim to make fun of Harvey's disabilities,” said Heat's publisher Emap. But what was the aim then, exactly? That schoolkids slap Harvey's image on each other's backs or bags, have a laugh at this “funny-looking” kid? How were parents of other Harveys supposed to regard it, whose deepest dread is their disabled children end up outcasts, mocked by cruel peers?"

Not so hot

So I trot off to the newsagent's to buy my copy of Heat. This week's issue has some free stickers with it, one of which is a photograph of Katie Price's disabled son Harvey, who is five and blind, among other things. He is big for his age.

The sticker says: "Harvey wants to eat me".

This might conceivably be a (very) mildly amusing fattist joke if the image were of, I don't know, Fatty McFatty from Fatville. But it's of A FIVE YEAR OLD CHILD with severe disabilities which cause him to look the way he looks. Has Heat gone insane?

Read Caitlin Moran on the subject on Alphamummy. 

Here's a not very good picture of the sticker: