 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)?
Thanks very much to Sharon for sending it to me. You can read the article here.
Mark Haddon, author of the excellent The Curious Incident of the Dog in the Night-Time - narrated by a boy with Asperger's - has written a drama about Down's, this morning's Independent tells me. (They have rather a feeble website and I can't find the article, by James Rampton, online - I gave up after 10 minutes, but maybe it's in there somewhere if you're very dedicated. It's very much worth reading , not least for the quotes by the 22 year old actor with Down's who plays Ben, but alas I haven't got the time to reproduce it here in full*).
Coming Down The Mountain opens with the line "Last summer, I decided to kill my brother," the brother, Ben, having Down's. "Sometimes they change the recipe and you get a brother who is a big potato with eye tentacles. And then you might as well talk to the dog," runs a line of dialogue. Another has David saying to his brother: "Why are you so clumsy and stupid and pathetic? Why do I have to take responsibility for you all the time? You're not my brother."
From the Indy: "David's fratricidal feelings are exacerbated when he is forced to move with his family from trendy London (and his gorgeous new girlfriend, Gail) to deepest, darkest Derbyshire so Ben can attend a more suitable school." Mark Haddon says: "I'm sure some people will get the wrong end of the stick about the scenes where David abuses Ben, but no writer can control the response of an audience... The way of creating believable characters is not by conforming to a set of PC rules. I don't want it to be sanitised."
I can't wait to see this. It's on Sunday at 9pm on BBC1. Here's the link to the relevant BBC page. If you watch the programme, please let me know what you thought of it.
* EDIT: Thanks to Joanna, below - the link to the article is here.
 A sixteen-year-old girl called Kate Saunders posted so passionately about testing for Down's (see entry further down the page) that I asked her if she'd like to write about what it's like being 16 and having a little sister with the syndrome. And so she did. And it's great. The picture is of Kate's sister Alice, holding her newest cousin, Michael.
All about Alice
The last time I took my 8 year old sister Alice to the cinema, we went to McDonalds as this is Alice’s favourite treat! When we got to the counter, the woman behind the till asked what we would like. I ordered mine and then asked Alice to tell the lady what she wanted.
“Chips and nuggets please.”
Well, I could have seen that coming - that’s what she always wants! The woman then looked at me and said, “What drink does she want?”. To which I replied, “I don’t know. Why don’t you ask her?”
If Alice had been any other 8 year old girl the woman behind the till would have asked her what she wanted to drink rather than assuming I could mind read. But Alice isn’t any other 8 year old girl. Alice has Down’s Syndrome.
When Alice was born I didn’t know what Down’s Syndrome was, as I was only 8 (I’m now 16). Dad sat me, my older sister, Beckie (9 at the time, now 17) and younger brother, Jack (4 at the time, now 12) down and told us that Alice was a very special baby because she had Down’s. He told us she may find it harder to do things, and that we’d have to help her lots.
Well, Alice is definitely special!
She went to main stream play school and now goes to main stream primary school, where she has an LSA to help her every morning of the week, but in the afternoons Alice manages on her own. Alice also uses a laptop to do most of her writing because she struggles a lot with pencil control. But her reading is fantastic; she has completed the reading scheme and is at the same level of reading as everyone else in her class.
Living with a little sister who has Down’s has its ups and downs. Alice is a great member of our family and she always lights up any room. She cheers us up and brings a positive side into everything. But it’s not all plain sailing. Alice needs extra help with things that we take for granted. Like when she was learning to get dressed, or put her shoes on. She still needs help doing her hair or brushing her teeth, but she’s getting there. And the fact that Alice doesn’t learn to do things as easily as we do makes it so much more of an achievement, so much more fulfilling when she does finally get it.
Alice has a love for music; she’s forever dancing, singing and playing the drums. She is better at using the computer than me, and loves telling us what to do. So although Alice does struggle with some things there are always things that she is very good at.
I know that some people think that Down’s is a disease, a bad thing, something that makes people suffer. But it’s not like that at all. Alice doesn’t suffer; she’s one of the happiest little girls I know. The fact that Alice has Down’s doesn’t change who she is, she’s still Alice, still my baby sister, even if Alice couldn’t walk properly, or talk properly or feed herself she’d always be Alice, our little star.
As for the future, Alice is going to have more struggles in school as the rest of her class get on with the harder work, but I know that she’ll manage, she just needs the right help.
When Alice is an adult I very much expect she will be able to live at least semi – independently, but if for any reason she couldn’t I know that Beckie, Jack or I would all love to live with her, she’d make life a lot more fun!
Kate Saunders
Thanks to Annabel for pointing me towards this. You can view it here.
 Thanks to Francesca Lambert for sending me pictures of her chipper-looking twins Eric and Joe, who are five and have Down's. Eric is on the bottom and Joe on the top. Please keep these pictures coming - I really love receiving them.
This little poppet is Sophie Robson, aged 8, hanging out with Winnie the Pooh
at Disneyland Paris last summer. Sophie has Down's. Thanks to her mum Sue for sending this in.
From reader Jan Shorrock. The picture is of Jan's daughter Jessica.
"I have 2 children Jessica aged 15 and Jack aged 11. Both Jessica and Jack attend Montgomery High School in Blackpool, even though Jessica has Down's Syndrome.
From the moment Jessica was born we, that is my husband Gary and myself, disregarded the medical label given to Jessica's condition. In everything from play to discipline, Jessica was treated as the baby girl we had waited so long for.
Jessica attended mainstream nursery and primary school and I have to say that if parents of special children do not seek to access the quality of teaching for their child as indeed they would any of any child then they cannot expect to change or challenge the education on offer.
We must accept that Special needs children in maistream school is something relatively new, and a huge learning curve for education authorities, teachers, parents and other children.
Continue reading "Education, part 2, plus theatre in Blackpool" »
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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