Oh FFS I am shaking... has there been a thread yet about Minette Marin's unbelievable column on babies with Down's syndrome?

[emkana]

words fail me

gokwancarr, yet...a baby who has down's syndrome isn't a 'horrific accident', they're a person just like you and me. A different person, a person who'll need help, yes. A person who may have health problems, yes. But a person. That, for me, is the difference.

How 'independent' are any of us? Do any of us live our lives entirely alone? Don't we all depend on others for most things - for delivering food to the shops, for supplying electricity to our homes, for taking away the rubbish, for friendships? It's a different sort of dependence, but I think we're too caught up with thinking that all people need to be independent or they've failed. None of us are. Ever. Not unless we're the only ones on a desert island.

As for pain, pain relief exists. It can be managed. It's not a life sentence, and if it is, the doc's doing something wrong. I'm not denying the difficulties of pain - I also have arthritis and endometriosis, and there's plenty of days when the pain relief isn't that great, but I still don't want to be dead.

I have supported friends who have had abortions, but with a heavy heart. It's not for me, that much I know. I lost a baby to miscarriage, and I will never forget how distressed I was to lose that young life. Yet, if I knew there was little help out there for me, and I was going to be unable to care for that child, then what choice might I have? Yes, there is a 'reality test' that has to happen. But a child with a disability isn't the same as a horrific accident . We're people too.

"some horrific accident" These are children not a car crash!

I could kind of agree about the test, if it was testing for something absolute, but it tests for a condition which has a wide range from hardly afected to severely affected

If the test told you your baby would be severely brain damaged, never able to walk, see, hear, respond etc, then maybe I would consider a termination

BUT this test does not do that, it really tells you very little, and then you're asked if you want to terminate on the basis there is a small chance your child will be severely disabled.

Ten years ago I might have considered termination, but now I know a little more about ds - just by pure chance - it's not as black and white as a 'test' suggests

Just doesn't seem worth putting yourself through sometimes.

georgimama you made exactly the same choices we did dor the same reason (with ds4). With ds3 we were told he was high risk and pressurised massively to aort / amnio (which I couldnt have rested after so presumably chance of miscarrying would have been higher)- we refused and then he was born NT or seemingly, then became sn anyway.

With ds4 we just decided to accept the baby as he was. he does seem very NT atm and for that we are grateful but it alters nothing about how blessed we are to have him.

The suffering one is difficult: I wouldn't say ds3 suffers at all, quite the reverse indeed, he's a happy soul. DS1 however is not, I think in great part due to his necessary immersion in the NT world and the rejection / experiences associated with that. This probably causes a lot of his anger which in itself is a massive issue for us a whole family, and he is also worrying us atm with a possible eating disrder developing (have had one myself in the ast so at least am aware). But it is indeed society that causes this suffering: were there adequate provision in schools for kids like ds1 there would be an easier path fr him I feel. Likewise my path would be easier iof people didnt feel they had the right to jusge us when ut; if the Governemnt didnt over complicate every little thing; if caring weren't so undervalued as a role that I had to monitor every penny etc etc etc- al emiinetly solvable but as long as people like ds1 and indeed me as a carer are cast as poor victims we willr eceive this treatment, as people think they can smile benevolently / chuch £1 in a tin and they have fulfilled some duty: I'd much rather yu included me in your lives, made one or two spaces at your pre-school suitable, educated yourself about invisible disability- but that won't happen, that's not how our sociewty operates at all.

how can people actually write/publish these views?
i suppose one good thing to come from a such shockingly disgusting item is that is has lead to discussion which hopefully allows people to explore and question what they think, that is never a bad thing.
i am sure lots of people do hold the belief that children who have Sn are of less value and hence we love them less
our family is very "damaged" then as we have three children who happen to have autism, i disagree, our children are more likely to be damaged by people out there in the world, people who write articles full of shit and pedal their nasty views.

I do not usually post on these types of threads as I worry I will upset someone unintentionally by my naivety and lack of awareness of all the concerns and angles of other parents.
I have little personal experience and have not really spent a lot of time with any adult or child with learning difficulties or physical problems. I struggle even finding the correct way to say "child with xxx" and did not pick up that "downs babies" is clearly not the best way to label anyone - I can see it now it is pointed out, but not blaringly obvious.
So, reading this article has been an eye opener. I did not realise the abortion rate is so high. I did not realise that there is a professional journalist, editor and publishing team out there that are so unbelievably ignorant to think this article is appropriate. The phrase "left me cold" happened quite literally. As I read the OP link, I felt an actual real shiver of distaste all the way down my back.

If someone in my position, with no real emotional or personal issue with this subject (again, no idea how to phrase that and sorry if I put it badly) finds this so distasteful and upsetting that I feel a driving need to post about it, I can only imagine how parents of children with disabilities, downs syndrome or other, must feel.

I do hope that plenty of people read this article. I believe that the "Wrongness"of much of it is so transparent that it could do a little bit of good out there and be enough of a spark to get people thinking.

India Knight - normally irritates, in her reciprocal article, she rocks!

Of course people with disabilities have satisfying and produtive lives. Of course they are happy and bring happiness.
However I would still never judge any woman on her personal decision to continue or terminate a pregnancy.
I once represented a kid with CP who's Mother was also disabled. The Mother could cope with her able bodied kids ( just about ) but my client had to go into a care home. I don't think I would ave judged that woman if she had decided not to proceed with her pregnancy.

I think what the author was trying to say is that realistically, those with Downs are still going to have a hard time as adults, in the kind of cruel world we live in today. I don't think she meant any harm by her comments, as she felt she had to constantly justify herself throughout the whole article.
It's not easy caring for a disabled child, and it won't be easy when the parents die, and the child is left to fend for themselves. You have to think about the provisions for them when the family passes away. I think it's the long term that the author was relating to more than anything.

well if she didn't mean any harm by her comments one wonders why anyone would have persuaded her into a profession that required her to voice opinions - given that she is clearly spectacularly stupid.

She is without doubt either very very unpleasant or very very stupid. It is simply a case of which.Although I suppose it could be both.

Anyone who actually sits down and writes that she is far more knowledgable about the happiness of my life and my family that I am is a twat. End of.

actually a number of adults I know with ds do not find the world hard. I know one woman who travels the country enjoying her two favourite things ( as she says) public speaking and champagne.

I know couples with ds who are largely independent with very little involvement of other - in terms of a carer role.

eidsvold, that's very fortunate that you know people who cope well with DS, but sadly not everyone with DS is as lucky as this and can stumble upon difficulties as they get older..I don't have an opinion on this either way, as I can see both sides of the coin. We can all say that it's ridiculous to even consider abortion with a DS baby, but at the same time the practicalities of raising a kid with DS is very complex, and not as straightforward as many would think.

actually it is a lot more straightforward than a lot of people would think.

"at the same time the practicalities of raising a kid with DS is very complex, and not as straightforward as many would think." Ahfeckit, Eidsvold's dd1 has downs, so I think that she is in a far greater position to comment on the "complexities of bringing up a kid with ds".

I think to tell someone who has a child with downs, who lives every day with that child and knows first hand what it's like that bringing up a child with downs is more difficult than we would think is patronising in the extreme.

absolutely it is patronising!

also/// yes some adults with dsnever chieve the level of independence Eidsvoldis talking about but that's nnot unique to the disabled population; my bil at 35 stll ives at home with mommy and never has cooked /ironed /washed clothes. He isn't disabled though.

apologies if it came across patronising, all I'm saying is some folk would rather not be raising a child with a disability, DS or otherwise. It's not easy to fit into society if you have a disability, sorry for lack of PC here, just telling it like it is. So I can appreciate why many choose to abort, because of the cons of having a child with a disability and what it would mean for their future.
I take my hat off to anyone that can raise a kid with any sort of disability, it must be very rewarding as well as raising a kid with no disabilities at all. But not for everyone.

"But not for everyone."

You do realise that most people don't have a choice don't you? At ds1's SLD/PMLD school (so it takes the most severely disabled in the area) I have yet to meet someone who knew antenatally.

sometimes folk are aware if there's a high probability of having a child with a disability through antenatal testing. For those who choose not to, that's up to them and I'm sure they made that decision carefully before commencing with the pregnancy.
I'm not trying to start an argument here, just giving my views like the next person.
we are all entitled to our opinions. some of us don't have opinions with the benefit of first hand experience, but surely we can discuss how we feel about the chosen topic??

"It's not easy to fit into society if you have a disability, sorry for lack of PC here, just telling it like it is."

But that has nothing to do with the disability. it does, however, have everything to do with the attitudes of those who feel they have the right to not accept people with disabilities into their lives and into our society.

It is society's attitude that needs to change, to ensure that disability is not seen as something to be avoided at all costs.

And fwiw not everyone with a disability finds it hard to fit into society.

It also presupposes that fitting in with the way ordinary society works is the ultimate aim of everyone.
Actually quite large chunks of modern society are lowest common denominator materialistic shit.And if I may say the endless quest for the perfect slim talented high achieving child is part of that.

I would also bet quite large chunks of money that all three of my children are probably happier that most other children from 'normal' families on this board.

It is just a guess but based on all of our friends and their children plus DCs friends.

My Ds2 is happily oblivious to the fact that society seem to have a problem with him and is very very happy indeed. His siblings have a nice dose of cynicism about the way children are expected to think and behave and also the values which 'society' holds dear - and so are also remarkably happy.

Hear hear pagwatch, if fitting in with society's tastes, which Minette Marin neatly summarises as "no one will want to have sex with them because they are ugly" then a good bloody job disabled people don't fit in.

I don't want my DS to fit in with the materialistic, amoral, mindless, Cheryl-Cole-X-factor-Manchester-United footballer-Dolce & Gabbana valuelessshit that the media and the peddlars of this media agenda like MM press on us either.

someone once said of me that I would never get married because A I'm not very pretty and B I have a disability. (it was an overheard conversation "I feel really sorry for her, because she'll probably never find a husband, because she's not really very pretty and she has a disability.")

Mind you these were 16 year olds so perhaps one could forgive their naivety. Although the conversation has stayed with me since...

well said Georgie.
I still don't understand how one minute the baby is a wanted one. One test later it isn't wanted anymore. And so often the decision is made without any real knowledge of disability. Only that we (I am disabled) suffer and are tragic.
People are therefore making a decision without all the information.

I took dd out today(shock horror)
a nice man came up to us and said hello. he was in a motorbility scooter. he reconised that dd has cp and said that he did to. he chatted and said that he loved being out and about and mixing with people.
I am sure he would be horrified by the comments made on this thread(as I am)

this thread is moving so fast but just wanted to clarify that i don't think for a moment that a child with sn is a 'horrific accident'...i just referred to being able to predict accidents because people are quite rightly pointing out that not all disability is a result of congenital conditions.