The laydees over on Mumsnet have been having a huge discussion about miscarriage, from which it emerged that there is a real and urgent need for change in the way the NHS deals with parents unlucky enough to suffer one.
What’s also clear is that some fairly straightforward changes would make a huge difference. Mumsnet has, in consultation with its users (375 000 of them each month), drawn up a list of 10 key recommendations which they feel would make miscarriage less traumatic, and which they've sent off to UK health ministers. Their suggestions include not treating women who have miscarried on ante or post natal wards, something which I personally find completely incredible in its lack of sensitivity (the idea that this happens, I mean, not the suggestion. I can't make sense today - sorry). You can read the whole list of recommendations here.
There are stories in today's Times and Daily Mail about the brilliant late American playwright Arthur Miller and his son Daniel, who has Down's syndrome and is now 40. Daniel was the child of Miller and his third wife, Inge Morath. Miller committed Daniel to an institution when he was a week old, because he apparently didn't want his daughter Rebecca growing up with "a mongoloid". At 4, Daniel was moved to the Southbury Training School "for the mentally retarded" in Connecticut. His mother went to see him every Sunday; his father never did.
The sister Rebecca ended up marrying the actor Daniel Day-Lewis, who is thought to have been instrumental in urging Miller to make contact with Daniel in the late 1990s. Miller himself died in 2005 and left Daniel a share of his estate, having met him again in the late 90s and been "absolutely amazed" to find that Daniel was able to live on his own. All of this is from the forthcoming issue of Vanity Fair magazine. There is a great deal to be said about male vanity and disabled children, much of it illustrated by this depressing story. Something like 40% of marriages break up when there is a child with a disability in the family, and, put it this way, it's rarely the father who's left trying to hold everything together.
In other news: measles cases have tripled, says the front page of today's Times. I'm not going to start droning on about this again - if you scroll down a bit you'll find more than one entry on the subject of MMR and irresponsibility.
Dyslexic, or just thick? Today's Times has a story about Julian Elliott, an educational psychologist at Durham University who says he has found no evidence to identify dyslexia as a condition. He believes it should be re-diagnosed a reading difficulty. Prof. Elliott told the paper that dyslexia had become a social fig leaf for middle-class parents who do not want to accept that their children are simply low achievers. "After years of working with parents, I have seen how they don't want their children to be considered lazy, thick or stupid. If they get called this medically diagnosed term, dyslexic, then it is a signal to all that it is not to do with intelligence," he said. He added that dyslexics have similar symptoms, such as clumsiness and letter reversal, to people who just can't read.
You can read the news story here; a longer feature about this, and the possibility of dyslexic children having an "unfair educational advantage" is here. I'm not saying anything - other than that I find it BEYOND irritating when I meet people who tearfully tell me about their child's special needs, and it turns out said special needs means being a bit crap at reading. If only we were all so fortunate. But anyway: what do you think? It's certainly true that dyslexia would seem to affect a disproportionate number of middle-class children. I know a number of dyslexic kids (and adults) who are really bright, so it's obviously not to do with a lack of intelligence. It may, however, be to do with a lack of intelligence when it comes to reading, in which case you can see how some people might think that such children do indeed have an unfair educational advantage - if you're generally not very bright, you get no extra help, if you're not very bright at reading, you get lots.
I have a complete bee in my bonnet about this, as regular readers may have observed. It's simple, really: when my children were small and I accidentally gave them products containing certain E numbers, they went absolutely BONKERS. I have no doubt that if I'd given them foods containing said E numbers on a daily basis for the past ten or so years, they'd have serious "behavioural difficulties" by now, to say nothing of galloping hyperactivity. Here is an article from today's Daily Telegraph about new research into the effects of specific E numbers on children's behaviour. I know many of our children may have behavioural differences that have nothing to do with diet, but I still think a lot of people inadvertently still feed their children these, and it really doesn't help matters, to put it mildly.
Update: today's Daily Mail helpfully publishes a little chart of the additives in question, which I am reproducing below. (No mention of E220, which many people also have serious reactions to). You do have to wonder why it's taken the Food Standards Agency such an incredibly long time to get round to this, when you think that, for instance, Maurice Hanssen's bestselling book E For Additives was first published 23 years ago.
of this blog for the past week or so. Christmas always seems to catch me totally unawares - in my head it's a few weeks after the summer holidays. Anyway: I'll get back to normal in January (kind of - I have a book out on the 4th, which involves quite a lot of time-consuming publicity stuff, but only for a week or so).
Meanwhile, here is a news story about Charlotte Wyatt, the severely disabled little girl involved in a test case when doctors asked the courts for a DNR order. Her parents won the case, but subsequently split up. She's now going to leave the hospital she's been in since her birth three years ago, and be fostered. Don't know about you, but for me this story really does the business on the cockle-warming front.
(pic from the BBC's website)
The 25th Arvon International Poetry Prize was awarded last night to this poem by Sian Hughes. 'The Send Off', says the press release, is "a mother’s address to her child who has been buried in a hospital grave for those delivered too early to be registered as stillborn. It’s a haunting farewell to a baby that has been aborted after being diagnosed with Down’s Syndrome". The 26 stanzas echo the 26 chromosome pairings in a healthy child; there is one extra line inserted in stanza 20, "unbalancing the poem and echoing the child's diagnosis". The Send Off
Mummy has to go now. Sorry we were late.
I brought you a flower. No, it’s dead.
When you cut them, you see, they die.
The petals were white when I left.
I was sewing your name tags.
This is your name. I know it’s no use to you now.
Home clothes are not allowed. It’s the rules.
Your shawl is taped to your parcel.
Don’t be afraid. You are not alone,
and no one has a bed with a window.
The man with the spade brings you in
from the rain. The one in black says words.
In a few weeks they’ll come back
and let in more new friends.
The view changes each time. The sky,
believe me, is not always this cold.
When I was a little girl like you
I liked to look through the banisters
and see who was calling so late.
My parents in their fancy clothes
might turn and say “Who’s out of bed?”
The visitors blew kisses. Sometimes
they saved me something special
that the grown-ups had to eat.
My darling, sleep well in your bed.
Don’t come out on the landing where it’s cold
because, you see, I won’t come home
in my long dress and necklace
and blow you kisses up the stairs.
I won’t carry you back to bed
to rub your blue feet better
or fetch blankets from the box.
No, you don’t need a bottle, cuddle,
special rabbit, teddy, bit of cloth.
You don’t even need to close your eyes.
They were born that way, sealed shut.
You are a hard lesson to learn,
soft though you are, and transparent.
There’s a mark on your forehead –
the simple flaw that separates
the living from the dead.
It looks like I dropped you downstairs.
I didn’t. I promise. It was like this:
somebody did some counting
and when they added you up
they found one part of you didn’t match.
It’s supposed to come out even.
They call it trisomy twenty-one.
It’s not such a lucky number.
No, I know it doesn’t begin to explain
your lack of Christmas presents
or the colour of your skin. I know
the best smiles in the world come out uneven. 
- Sian Hughes
Here's a link to The Arvon Foundation, which, incidentally, I couldn't recommend more highly if you're looking for a creative writing course.
 Fraser, who is four months old, has been diagnosed with cystic fibrosis. CF is caused by a genetic problem involving a defective gene on the 7th chromosome, which causes the lungs to get clogged up with mucus; the mucus also obstructs the pancreas. There is no cure, though life expectancy is now "good" - age 31 - where it has been very bad. Brown and his wife Sarah lost a daughter, Jennifer Jane, in 2002; she had been born seven weeks prematurely and died when she was ten days old. They also have a healthy three-year-old, John.
You can read the story in full here. The Cystic Fibrosis Trust's website is here. The Times' Dr Thomas Stuttaford on prognosis and treatment is here.
It's a very sad business. But the fairly extraordinary fact that both of our potential next prime ministers have children with disabilities - David Cameron's son, Ivan, has cerebral palsy and an especially dreadful form of epilepsy - just goes to show how widespread disability has become. When I was a growing up, I knew precisely one special needs child, and wasn't aware of anyone in the public eye having such children - or if they did, the children were only ever mentioned in a furtive whisper, and more often than not in a "home". The combination of medical advances and a gradual falling-away of shame and embarrassment is changing all of that, which has to be a good thing.
Poor Gordon and Sarah Brown. I don't know quite why I should feel so upset for them, but I do. It might be to do with the fact that, in photographs, Brown only ever smiles properly - with his eyes as well as with his teeth - when he is cradling one of this children.
... increase your chances of getting pancreatic cancer by 90%, says the American Journal of Clinical Nutrition. The image is a tribute to my "partner" (I hate that word), who was raised on healthful Irn-Bru, the tooth-destroying, radioactive-coloured "soft" drink.
The Guardian has a good, non-hysterical piece about the news earlier this week that we and our children (and foetuses) are all being poisoned in our own homes. Is it wild speculation or terrifying truth, and what are we supposed to do about it? You can find out here.
I've always been of the opinion that you can very easily drive yourself insane wondering what it was that you did, ate, imbibed, or exposed yourself to that may (or may not) have resulted in your child having difficulties of one kind or another. I don't dwell on the fact, for instance, that I spent a lot of time in the countryside in the very early stages of my pregnancy. An old friend, also pregnant, came to visit me. The weather was beautiful; we drove around with the roof down. The crops were being sprayed all around us. Both of our children were born with de novo, i.e. not inherited, abnormalities. Is there a link? Like I say, I don't brood about it too often. But that doesn't mean the thought hasn't crossed my mind. More than once.
 There was an item this morning on GMTV - you can read about it here - about how three million carers in the UK have wished they could walk away from their situation. 32% were caring for a parent, 31% for a spouse and 14% for a child. The programme, in its wisdom, chose to illustrate this story by interviewing a man who cared for his disabled son with the son sitting in the room and listening to every word - 'Yes, it's awful, can't stand it, feel like jumping off a cliff' (I'm paraphrasing, but not much). I found myself staring in disbelief, and then I'm sorry to say I just started laughing at the horror of it all. I mean, obviously it's nice of the man to care for his child, and many of you know what hard work it can be, but this was real 'Does he take sugar?' territory - the child was sitting right there, peering at the camera, clearly hearing what was being said. I love it when mainstream programmes try to be 'sensitive'.
It's Halloween, so I'm off to stock up on bullet-proof vests and a couple of baseball bats bagfuls of sweeties, but I'll post properly later.
One last thing: I've had lots of emails and letters about the vexed question of families, as in relatives' reactions to one having a special needs child. Many of my correspondents seem to feel that their familes' input is on the feeble side - there's an awful lot of 'you're so brave' and 'but he/she's better now, right?', very little actual help or support, and vast reservoirs of shame, guilt and embarrassment. Unfortunately, the letters I've received were not for publication, but I think this is a really big topic and I'd like to write about it. If you have any experiences you'd like to share on this subject, please use the form on the right and email me. As ever, I can anonymise you if that makes things easier. Thank you
to raised chances of autism, childhood cancers, cerebral palsy and so on. You can read it here. I'd be interested to know what people make of this. I'm not particularly proud to admit that I've always had a superstitious streak - rather in the manner of a mediaeval peasant - that believes that if something's going to happen, it's going to happen, and if it's not, then it's not supposed to, and one shouldn't go forcing it.
Obviously I've revised this somewhat since, by my own criteria, my three childen wouldn't have survived childbirth - nobody is "supposed" to have Caesarians - let alone, in my daughter's case, a cardiac condition: nobody is "supposed" to have open-heart surgery, either. So my original feeling of 'Don't mess too much with nature" has evolved to "mess all you like in order to save lives".
But I still, unfashionably, have some doubts about IVF, which the story doesn't do much to alleviate.
UPDATE: There's an excellent article about this published in The Independent today (31 Oct), written by a woman who had her children through IVF. Really irritatingly, it's not on their website, but I've just posted it - it's after the jump. The author is Eve Ahmed. Copyright: The Independent
Continue reading "There's a news story today linking fertility problems" »
David Cameron pledges to simplify the current disability benefits system.
 And Charlotte Wyatt, the baby whose parents fought so hard to keep her alive (they got the DNR order lifted, you may remember), is in need of new carers after her parents
separate and she is left in the care of St Mary's hospital, Portsmouth.
Debbie Wyatt, her mother, has been to see her three times since February. It's easy to be appalled, but read this first. You may find yourself in agreement with Ann Widdecombe, somewhat counter-intuitively. Or not, as the case may be.
India Knight was born in 1965. She lives in London with her three children,
writes a weekly column for The Sunday Times and has written two fiction books,
My life on a plate
and Don't you want me?
and a non-fiction book, The Shops.
After writing an article in The Sunday Times
about her daughter's special needs (Nell has a cardiac condition called truncus arteriosus, and DiGeorge Syndrome, aka 22q11 deletion) she was so
inundated with e-mails that she has launched this
weblog as a forum for parents in a similar position to keep in touch, compare notes and help each other.
You can read about India and her daughter here.
Send India a story by Email
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