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

Ivan Cameron

Thank you for all your messages about Ivan Cameron's death last Wednesday. I haven't blogged about it because - well, because.

But work is work, and I have written a piece for this Sunday's paper, which I filed without re-reading as soon as I'd finished typing and which is probably quite mad. But anyway. Read that, if you like. I'd avoid it, myself, and just have a nice Sunday and count your blessings, however improbable they may seem.

Amazing blog/Twitter

Sorry - went awol again. Everyone in my family has December birthdays (except for Nell, who is FIVE on Tuesday), and then Christmas, and then blah blah blah - I'm about to blame snow, ludicrously, so I'll stop there. And I can't write properly now because am trying to get to bed reasonably early so can be fully braced for Nell's birthday party tomorrow - 20 five-year-olds, wahey. So I'll just draw your attention to Nick McGivney's fantastic blog, in which he writes about his little boy, Jacob (pictured), who has Down's. I strongly suggest you start reading from the beginning, i.e. head for the archives first, and just make your way through chronologically. You won't be sorry.

Phew. Now I feel like I've done something useful. I'll try not to leave it another two months.

Oh - having written about the utter needy weirdpo stalkery pointlessness of Twitter, I've performed a huge ideological U-turn and joined. You can follow me on there, if you like -- though I'm (t)wittering about general stuff, not about special needs. I'm @indiaknight.

PS Seonaid - I think you imagined it. Message me if I can help - I feel rather expert now. Send a message on here, not via email - for some reason it's not being forwarded properly. Or if it's ok I can publish your queries as a post and then anyone who knows can help.

PPS: breaking autism news from tomorrow's paper.

WFT Part 2

Following the below, here's my riposte to Marrin's piece, as per today's paper. They took out my joke about Magda Goebbels, alas. NB if you'd like to comment, please do so below the article, not below this entry - thanks.

WTF??

My colleague Minette Marrin writes the most extraordinary column in today's Sunday Times, about her apparently heartfelt belief that 'certain foetuses' should not 'come to term'. Certain foetuses include those with Down's, she suggests (see post below on this topic). They make everyone all miserable and stressed, and aside from anything else, it's awfully hard for them in a 'hypersexualised culture that worships bodily perfection'.

Can't be easy for ugly people either, I'm thinking. Or fat people. Or short people. I know! Let's get 3D scans of them in utero and hoover them out if they aren't aesthetically pleasing. I mean, poor things, it's not like anyone's ever going to want to have sex with them. And what about old people? Exhausting drain on their families, and unsexy to boot. Kinder to cull 'em, really. Plus they often show signs of mental retardation - where's the fun in that? And don't even get me started on the poor.

"What more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?" Minette writes, like a time traveller stuck forever in 1970. (All of the above could apply to, say, a soldier back from Afghanistan minus his lower limbs. Do we chuck him in the bin, too? Should we all, in fact, chuck ourselves in the bin, and be done with it?)

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died  not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places. Let's not, God forbid, believe in the crazy-ass concepts of hope, or faith, or love, or imagine that some children with disabilities might have happy, fulfilled lives and light up their families' every day. That would be delusional, defensive talk. Minette knows better.

Unlike the writer of, and contributors to, this blog, she's an expert. Her website says she "has a special interest in learning disabilities and was a trustee of The Home Farm Trust (which provides services for people with learning disabilities) from 1996 to 2005. She was also, until May 2006, a member of the Ethics Committee of the Royal College of Obstetricians & Gynaecologists.

In 2000-01 she was a contributing member of the Working Party, producing 'Women in Hospital Medicine, Career Choices and Opportunities, A report of a working party of the Federation of Royal College of Physicians'.

She is a member of the council of the Centre for Policy Studies."

Read the piece for yourself. Someone in Marrin's family (she doesn't say who) has a disability (she doesn't say what). She writes: "Sad observations over decades have convinced me: a damaged baby is a damaged family, even now."

Speak for yourself, love.

The article is here.

Down's syndrome news

Radio 4's excellent programme Born with Down's - which you can listen to here - has prompted a flurry of media commentary, to do with the fact that 15% more people are choosing to continue with pregnancies where Down's is diagnosed.

Here's a piece from The Guardian, one from The Independent and here's one from The New York Times. Dominic Lawson believes that doctors are prejudiced against Down's, and encourage too many terminations. Bryony Gordon
interviews the family of 13-year-old Ben Adkins, who has Down's. The Times' Simon Barnes writes about his son Eddie (both are pictured).

If you're feeling a warm glow, here's a piece that says the new figures aren't to do with shifting attitudes, but rather with number-crunching. Hm. It seems ludicrous to me to suggest attitudes haven't changed, when the most cursory glance shows that children with Down's, once stared at anxiously and called 'mongoloid', are now - depending on where you live, admittedly - part and parcel of everyday life.

As for attitudes to disability shifting in a broader sense: my eldest son, who is 16 next month, had to write and deliver a speech about any aspect of chromosomes for his science homework last week. He decided to write about chromosomal anomalies, specifically DiGeorge, using his sister as an example (it was a very assured and touching piece of writing - I might ask him if I can stick it on here). My point is that a 'cool' 16-year old, whose life revolves around parties, gigs and girls, would perhaps not have breezily drawn his entire class's attention to his sister with special needs twenty, ten, or maybe even five years ago. As far as he is concerned, there is nothing to be remotely furtive or opaque about. If that isn't an example of a shift in attitudes, I don't know what is.

Trisomy 13

Thanks to Chloe for sending me this piece from the Guardian. The author, Victoria Lambert, writes powerfully about her regret at having an abortion at 13 weeks when she found out her baby had chromosomal abnormalities, in this case Patau's syndrome, aka Trisomy 13. Read the article here. More on Patau's syndrome here.

Victoria Lambert's story makes me think of how far we've come since pre-internet days when it comes to subjects like these. Twenty years ago, she could perhaps have put the whole question of kids with T13 out of her mind, or tried to. She'd have been highly unlikely to come across any stories about it in the mainstream press, or to cross paths with parents in a similar boat. Now, with two clicks of a mouse, she can torture herself to her heart's content by reading parents' stories and looking at children's pictures. Wonderful if you're a parent in need of support, of course. But devastating, surely, if you are a person eaten up with regret.

13-year-old girl wins right to die

Hannah Jones, who is 13 and terminally ill, has persuaded her hospital to withdraw a High Court action that would have forced her to have a heart transplant against her will. The story is in all the papers today - here is The Times' coverage..

I don't know what I think about this at all - part of me really admires Hannah, whose short life has been punctuated by major surgery and illness, for saying "enough is enough". Another part thinks, 'yes, but heart transplants often have excellent results'. Yet another part thinks, 'what if the transplant re-triggered her leukemia', and so on. I go round and round in circles. The only thing I see clearly is that it is obviously far better to die at home, rather than in theatre or on a ward. Other than that, I don't know. What do you think?

Edit: interview with Hannah here.

Special Needs Handbook - your help needed

Here's an email from Helen McGrath-Doherty, who is compiling a special needs handbook for parents, carers and therapists, which will be available free as an online download. She's after tips, or any other useful information. Send her an email at helen@specialneedshandbook.com.

We are currently compiling a unique new publication which will be tremendously helpful to parents and professionals alike.

The Special Needs Handbook is a practical, easy to use problem solving guide of suggestions and tips for parents, carers and professionals encountering day to day issues.

We are compiling all the good ideas and practical solutions to everyday problems that parents and therapists have tried and tested over the years together in one publication. Once compiled, the book will be made available free over the internet, with the possibility of publishing it (not for profit) and making it available through shops.

We need your help!

Please forward this message asking as many people as possible to please send us at least one tip (or more if possible ...).

All contributors whose ideas are original and published in the book will be sent a free copy - so be sure to include your name and address along with the tip or tips you send in.

With all best wishes and thanks for working together with us to make this successful.

Special Needs music groups and how to run them

A reader posted this under the Quinn Bradlee thing below, but I'm printing the relevant bits up here in case anyone can offer help or advice. She is planning on starting a music group for SN children and would like some pointers - any thoughts? (Em - I hope you don't mind me doing this. It's going to get lost if I leave it where it is).

The picture is of the brilliant Singing Hands's new Makaton-approved DVD, which I can't recommend highly enough. (Actually, Em, if you wanted to see a really fantastic, well thought out, inspirational sing and sign class in action, you couldn't do better than to than contact Suzanne and Tracy - they also run workshops for professionals).

I have been debating with myself recently whether to follow on with an idea I had a few years ago about running a world music group (in the area I specialise in) for children with special needs and as a result of the inspiring content of the blog and its comments have decided to go for it - but with considerably more thought than I had previously given to a lot of issues - how to talk to and refer to special needs children, how to treat their families, how to be inclusive of their SN or non - SN siblings, how many people will be necessary to run it, how I might relate to an incredibly wide range of needs, how the participants will relate to me, how to communicate (I am fired up to learn to sign, but clearly need to do more research before starting as I had no idea there was more than one sign language) etc etc.

I do have a tiny bit of life related experience - a childhood friend of mine has been made seriously disabled as a result of hospital and special school negligence (unbelievably on 3 separate occasions in three different institutions) and has manifold difficulties which have no particular diagnosis but which limit her mobility and ability to speak and see. But although I have always considered myself as someone who is aware of the issues connected with 'special needs' - what an umbrella term - I have never seen any of this from the parents' point of view. Being this girl's friend meant that I was shielded from a lot of what was going on with her in case it frightened me, and with the self involvement of childhood, often just didn't notice when things were more difficult for her than me. I'm lucky to have met her - we still share many of the same interests years later although we rarely see one another now. But this was the impetus for my beginning to want to bring my ethnomusicological knowledge to children with special needs - partly because I saw how interested she was and is, and partly because I think the highly specialised area of music I research and play would be a perfect arena for a wide spectrum of needs from a group of children, incorporating as it does some areas where perfection is necessary, some areas where improvisation is necessary, some where manual dexterity is central and some where it is not necessary to be able to grip at all. Music of contrast.

Anyway, this has been long and rambling but I would like to ask, preliminarily (I think this group is going to take a lot of planning) if anyone has any input on what might be good in a music group for children with special needs? The music is pretty fixed but I am very keen to hear if anyone has do's or dont's with teaching style etc. What would you like me to do if, hypothetically, I were going to teach your child?

More on autism and play

I've written several times about the appeal of Thomas the Tank Engine, but here is a piece from today's Times about how playing with Lego can help autistic children to socialise.

And again

For anyone who can't watch the Bradlee film via the link in my previous post, here it is from YouTube.

Part 1:

Part 2:

Part 3:

Quinn Bradlee's film about DiGeorge

This is a bit more cheerful. Quinn Bradlee, as in son of Ben Bradlee, as in Watergate - I wrote about him last year - has VCFS, aka DiGeorge, aka 22q11 deletion. He's made a terrific film about living with the syndrome; it includes an interview with Dr Robert Shprinzen, who first identified VCFS in 1978. Everyone should watch this; if your child has DiGeorge, email it to anyone who's not quite clear about what the syndrome entails. You can watch the film here.

Various bits

Joanne Hill, who drowned her little daughter Naomi because she was "ashamed" of the child's disability has been jailed for life.. Only click on the link if you have the stomach for it - personally, I don't. Mrs Hill had a history of mental illness and was, according to her husband, more or less an alcoholic; as far as I can see, she was not at any point offered the help or support that might have kept Naomi safe. It's a horrible, horrible story, but I don't quite understand how locking the woman up for 15 years really helps anybody.

Unique, the excellent charity for parents of children with rare (or, indeed, unique) chromosome disorders, is having its family conference over the course of this weekend. Details here.

NICE - the National Council for Health and Clinical Excellence - has (finally) stated that Ritalin should not be given to under-fives. They could have made more of the link between hyperactivity and diet, if you ask me, but anyway (I know I have a bee in my bonnet about this; and I know a minority of children benefit from Ritalin. But every time I see another mother at the park, shoving Diet Coke and sweets down her fat child and moaning about his ADHD, I get all prickly with fury. ADHD has become the childhood equivalent of "it's my bipolar, innit"). The BBC report on this story includes an interesting segment from this morning's Today programme.

Dental probs? Meet your new best friend

So I was sitting at the hygienist's yesterday, and she told me about this amazing-sounding new product. You know probiotics, aka 'good bacteria'? Scientists have now developed an exclusively oral version, which just works in the mouth. Basically, the good mouth bacteria eat the bad things that cause plaque and decay, which results in dramatically improved oral health all round. This is all very fabulous for you and I (to say nothing of for people with hideous halitosis), but it is especially fabulous for people with special needs who have dental issues. Children with DiGeorge, for instance, are especially prone to tooth decay, and for some children with severe special needs the whole concept of tooth-brushing can be a bit of a palaver/nightmare. (The product isn't supposed to replace tooth-brushing, obviously, but it's certainly going to be a help if tooth-brushing is for any reason difficult).

Now, I haven't tried this product myself (well, I have, once, but it takes two weeks to start doing its thing), and it does sound quasi-miraculous and almost too good to be true, but I have total faith in my hygienist, who was really excited about it. It comes as a sugar-free mint-flavoured lozenge, which you suck slowly (apparently they're working on making it in powder form, for people who can't suck). The press release thingy follows, if you want all the ins and outs. The product is called PerioBalance; it has been accredited by the British Dental Health Foundation. It will be available from Boots, Lloyds and Unichem from 27 October and will cost £14.99. For more information and stockists visit www.sunstargum.co.uk. To buy PerioBalance online visit dentalshop.co.uk or call 0845 006 6296. The press release follows after the break.

Back to school/ Russell Brand

Well, at school for the first time, actually, with a Statement on the way - hallelujah - which stipulates 20 hours of week of one-on-one help (which hasn't started yet). I literally felt nauseous at the idea of leaving Nell all alone at real school, didn't sleep at all the night before etc etc. We (entire extended family) solemnly marched her up the hill to where the school is and... she was absolutely fine. She was literally hopping with excitement and waved us off the second we'd installed her in her classroom. Then I sat by the phone, waiting for them to ring and sat she she'd had enough, but no: the whole thing seems to be a triumphant success. Advantage of having teenage brothers: she doesn't find the bigger children remotely intimidating. So, fingers crossed. THE RELIEF, I can't tell you. Also, look at her socks, the sweetness of them practically makes me want to cry.

There's a really depressing story in today's papers about a woman who couldn't deal with the idea of her four-year-old daughter having a disability (she had mild cerebral palsy), and drowned her out of "shame". Here's the link. I don't know which is more tragic, a little child losing her life because of attitudes to disability, or a grown woman having nowhere to go for help. Well, I do know, but you know what I mean.

More cheerfully, Russell Brand (who I've interviewed for the current issue of Harpers Bazaar, coincidentally) has got into terrible trouble for calling Dubya "that retarded cowboy fella" during the MTV Video Music Awards on Sunday night. ("It was nice of you to let him have a go. In Britain we wouldn't trust him with a pair of scissors").

Predictably, most of the criticism is about a Brit having the temerity to hold an opinion about the world's last remaining superpower (I know, the effrontery), but a vocal minority are furious about his use of the word 'retarded'. Which once again goes to show what a minefield this whole vocab issue is: Americans don't have any problem with the word 'spaz', as in 'I said we couldn't go to the mall and she completely spazzed out'.

Would "that spazzy cowboy fella" have been okay? Would there have been less outrage if he'd said Bush was "severely intellectually impaired" - the current "non-offensive" phrase? I'm not mad about either word - obviously - but I do think it's a question of context. In this context, I was too busy snorting with laughter to feel outraged at Brand's vocabulary. What do you think? (No rants about filthy Brits coming to America the Beautiful and deserving to be taken out and shot, please - there are plenty of those in the Comment bit here.) You can watch Brand's "offending" remarks below, if I manage to paste the link in.

The baby no-one wanted

Thanks to Heather for sending me this story, which she thinks is the first one in the US mainstream media about a child with DiGeorge. A little baby called Emma Grace was given up both by her blood mother and by her adoptive mother because of her "condition", which happens to be exactly the same as my daughter's: truncus arteriosus and DiGeorge syndrome. The poor baby lay there in hospital waiting for bypass surgery, and nobody came to visit her (though the kind nurses tried to atone for this); when she had the surgery, no-one was pacing up and down outside.

It's completely heart-breaking (and reminds me of the pregnant woman I once spoke to on the phone at the request of our joint cardiologist - her baby also has DiGeorge. Despite my best endeavours, she chose to have an abortion, which at the time made me catatonically depressed for about two weeks). This desperately sad story has a happy ending, you'll be glad to hear - you can read it in full here.

Thank you very much to everyone who wrote about Nell - I REALLY appreciate your messages.

We're home

... and it went brilliantly. We'd always been told that Nell's speech problems resulted from some non-specific, mysterious, super-weird  DiGeorge palate anomaly that wasn't, alas, one of the known and correctible DiGeorge palate anomalies, such a a sub-mucous cleft (where the cleft is hidden by the roof of the mouth).

Ergo, we all believed that she was really pretty unlikely to ever speak intelligibly. As I wrote below, we were told that this was an exploratory sort of surgery, and wouldn't produce any tangible result.

Anyway - they went in, the genius surgeon found an occult (i.e. cunningly concealed, even during X-rays and videofluoroscopies) sub-mucous cleft, AND FIXED IT. It honestly feels like a miracle (and like someone's listening when I pray for things that don't sound possible). We are now cautiously optimistic that, with further corrective surgery, Nell may actually speak "properly" and clearly. I am literally delirious with joy.

Other completely amazing thing: she was very poorly and on a morphine drip until Friday lunchtime. It is now Monday morning and she is back at school. Her mouth is sore, obviously - they repositioned the muscles and the whole shape of the roof of her mouth is altered - and she has to keep off crunchy food for a bit, but that's it: she's on nothing stronger than Calpol. Children are amazing. Doctors are amazing. Surgeons are amazing. The world is beautiful.

The picture is of Nell on Friday afternoon, dripless and morphineless, eating, incredibly, not ice cream but a (lightly) toasted cheese sandwich.

Hospital league tables

There's been lots recently about how marvellous it is that the NHS is to let you
choose your own surgeon. This comes on the back of those terrible, misleading NHS "death rate" league tables, which are now to be published online - basically, you can look up your surgeon and see how many people have died while being operated on by him or her. This all kicked off some time ago with the publication of heart surgery mortality rates in various hospitals.

I expect I'm preaching to the converted and that you've all worked this out already, but there is a really massive point about all of this which many commentators seem to have completely overlooked. I meant to write about it when the heart/mortality figures were first published but I never got round to it.

The point is this: the more complex the surgery, the more likely it is to result in death.  If your stupid league tables show you that nobody died following heart surgery at X hospital, it doesn't mean X hospital has magical powers - it means they probably do very ordinary small repairs, of the kind that are routine (for the surgeons, if not for the parents).

If the table shows that 4 people died at Y hospital, on the other hand, it doesn't mean Y hospital is crap at operations -- it can mean it's so good at them that it contains particularly highly skilled surgeons who are willing (and able) to undertake extremely complex, difficult procedures, even if they are of the high-risk, last-ditch kind.  Sometimes they don't get the outcome they hoped for. That's all.

I do think it's important that people understand this, instead of treating these actually very unhelpful league tables as though they were a surgical version of the Good Food Guide. The thing about giving people these kinds of choices is that it assumes everyone is properly informed and reasonably bright. Ain't necessarily so. You can just see what might happen: someone who needs really complicated surgery picks the surgeon who's not had many people die on him, thinking he's the safest of bets, whereas actually the opposite might be true.

I'll blog again when we're home safe and sound after our own surgery.

Ketogenic diet and drug resistant epilepsy

I was just on the Great Ormond Street website and came across this press release. It dates back to May, so apologies if those of you to whom it is relevant are familiar with it, but I do think it's worth reprinting. It's about  a randomised controlled trial about drug-resistant epilepsy and the ketogenic diet, which is high-fat and low-carb. 

I have a bit of a bee in my bonnet about this anyway - I wrote a diet book about losing tons of weight by restricting carbs and eating more "good" fats (butter and olive oil), and today I was just writing a thing about the acne diet (Google it if you're a sufferer), which also involves low-carbing and which can have dramatic results skin-wise. Plus I was reading Felicity Lawrence's new book late last night, which kicks off with a piece about the utter pointlessness of breakfast cereals.

Does anybody actually need useless carbs? It's 1.30 in the morning, so I shan't go into a rant about childhood obesity and the desperately obvious (to me) link between obese children and the amount of nutritionally barren processed stodge they consume, but anyway. Here's the press release. If your child has drug-resistant epilepsy, dump the dough.

Randomised trial confirms efficacy of ketogenic diet

Lancet Neurology press release

A randomised controlled trial has confirmed the efficacy of the ketogenic diet in helping control and prevent epileptic seizures in children with drug-resistant epilepsy. These are the conclusions of authors of an Article published early Online and in the June edition of The Lancet Neurology.

The ketogenic diet has been used widely and successfully to treat children with drug-resistant epilepsy since the 1920s. It is a diet very high in fat, low in carbohydrate and with controlled protein. Although the exact mechanism of action is still unclear, the high fat and restricted carbohydrate content of the diet is thought to mimic the biochemical response to starvation, when ketone bodies*, rather than sugars, become the main fuel for the brain’s energy demands. While there have been many observational studies of this diet, Professor J Helen Cross, Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, University College London, UK, and colleagues have done the first randomised controlled trial to test its efficacy.

The trial assessed 145 children aged between 2 and 16 years who had at least daily seizures (or more than seven seizures per week), had failed to respond to at least to antiepileptic drugs, and had not been treated previously with the ketogenic diet. Enrolment for the study took place between 2001 and 2006, and children were seen at one of two hospital centres or a residential centre for young people with epilepsy. All children had their baseline seizure levels recorded over a four week period. Following this, 73 were assigned to the ketogenic diet immediately, and 72 were assigned to the diet after a delay of three months – both groups had no other changes to treatment. The delay group acted as the control group during the three month delay.

The researchers obtained complete data for 54 children in the diet group and 49 in the control group. Using the baseline figures as 100%, they found that the number of seizures the diet group dropped by more than a third (62% of seizures recorded compared with baseline), while the control group saw their seizures rise by more than a third (136.9% of seizures compared with baseline). 28 of the 54 children who completed the three months in the diet group had greater than 50% seizure reduction compared with just four of 49 children in the control group. Five children in the diet group saw a seizure reduction of above 90%, compared to none in the control group. The most frequent side-effects reported at three months were constipation, vomiting, lack of energy, and hunger.

The authors say: “We have shown that the diet has efficacy and should be included in the management of children who have drug-resistant epilepsy. However, the diet is not without possible side-effects, which should be considered alongside the risk benefit of other treatments when planning the management of such children.”

They add: “In view of this we believe that the diet should be more widely available as a treatment on the NHS, for children with epilepsy, who have failed to respond to anticonvulsant medication.  We stress this is a diet which should only be undertaken on medical advice and under medical and dietetic supervision.”**

In an accompanying Reflection and Reaction comment, Dr Max Wiznitzer, Rainbow Babies and Children’s Hospital, Cleveland, OH, USA, says that more information is needed about the long-term effects of the ketogenic diet, including changes in blood fat concentrations and persistent ketosis. He adds: “Better identification of epilepsies that benefit from starting early on the ketogenic diet and comparisons between the choices of ketogenic diet are needed.”

Notes to editors: *Ketone bodies are water soluble compounds that are produced as by products when fatty acids are broken down for energy in the liver and kidneys. They are used as a source of energy in the heart and brain. In the brain, they are a vital source of energy during fasting.

**This second quote from the authors is their opinion and cannot be found within the Article

One for teachers

Here is an online article called The Ultimate Guide to Special Needs Teaching: 100+ Resources and Links. It's American, but it looks like there's some useful stuff in there.