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

By Litchick on Sat 06-Dec-08 10:59:17
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.

sorry but this post does show how ilttle people know.
you can't test for cp.
so how could the woman have not proceeded with her pregnacy??

that mother would just need appropriate support. I am disabled and dd has severe cerebral palsy - no movement and no speech. Would I have 'terminated her' just cos I'm disabled? No way.
And dd's brain i jury happened at birth.

Just wanted to point out that if the 91% figure is referring to people who had the amnio, then it is largely people who would abort for a disability who do this testing in the first place given the risk of miscarriage - I'm aware of a small number of exceptions - I just wanted to point out that is not necessarily the majority view.
Also, what is it that we really want for our children? Who would want their child to be successful and rich but miserable and unhappy. What we want surely for our children to be happy and it's up to us all as a society to ensure each child has that oppurtunity. Disabled does not = unhappy. NT does not = happy.

That is a very good point SJ, I don't know this but I would imagine that anyone who has an amnio is at least prepared to consider abortion if DS is diagnosed, otherwise why would they take the risk of having it?

My mum had an amnio with me (there was no triple test then) and she had every intention of aborting me if I had DS. She has been very up front about it. In a strange way it is vaguely hurtful, she didn't have the test with either of her previous two pregnancies, but as she felt her third baby (me) was a self indulgence, she was prepared to terminate if I had problems. Apparently she didn't think it "fair" to her existing children to bring a child with SN into the home.

As others have said, I could very easily have had other problems not picked up by amnio, or birth trauma could have given me SN anyway. I suppose it reflects the rather limited view of the 1970s. Anyway I think her attitude (and the fact that frankly, yes, I did want a baby, any baby) coloured mine.

I almost had an amnio (came close enough to be in the room waiting for Consultant) and no I wouldnt have terminated: it was about being prepared, knowing where we were headed. terminatin never a possibility.

I think quite a lot of people think that, albeit naively.

I wonder if that is the perception of health care staff though, that if someone is having an amnio they will want a termination if there are problems, so the whole slant of the conversation is negative rather than neutral? Impossible to know I suppose.

Sorry I meant the mother had CP the child had DS.
As I say she just about coped with her able bodied kids...not only because of her own disabilities but she had been brought up in a care home herself and had huge misgivings about letting SS into her life and some emotional scars of course.
There was also other stuff going on with her ex partner.
Anyhow, the point I was trying to make was that she had a whole heap of stuff on that I can't begin to imagine so if she had considered termination I for one would not have judged.
I just won't judge other women on their decisions because I'm not walking in their shoes.

Needmore coffee - I just don't think you can say because you've managed she would too.
She didn't have a partner for a start. Nor was she intelligent or artculate.
And she was affected hugely by her own experiences in some crappy institution.
In fact the proof of the puddig was that she didn't /couldn't manage.

Litchick oh ffs you use an example, then change it!
a lot of people posting on here are tellling it as it is not a second hand story, nipped and tucked to suit the posters stance on the topic.

I just don't think ending a baby's life is right cos its disabled (not against abortion although its not for me but the fact that the baby was WANTED until it was realised it had a problem) and its generally dressed up as 'its life would be so tragic and terrible its better to end it now'. How does one know? Disabled people's lives are rarely tragic, not more so than anyone elses, and that might be the one shot you get at life and death is a great big nothing.
If you'd said to me 20 years ago that I would have a 4 yo child with spastic quadraplegic cerebral palsy who was doubly incontinent and needed 24 hour care I'd of got sterilised. But the truth is, thats not what happenend. I had a beautiful baby with ginger hair. Not a label. She grew into that 4 year old in tiny steps which allowed the person to show first, before the impairment. Cerebral palsy is untestable for and is much much harder than Down-s syndrome (generally.There's always exceptions as both conditions have a huge range)
Did anyone watch 'A mother like Alex'?

2shoes - I mistyped and put CP when I meant DS - brain on overlaod. But I am not nipping or tucking. This is a real woman with a real ( albeit shitty) life.
But judge away. I will not.

i think you missed my point

'I wonder if that is the perception of health care staff though, that if someone is having an amnio they will want a termination if there are problems, so the whole slant of the conversation is negative rather than neutral? Impossible to know I suppose. '

I don't know if the priocedure we experienced was localised or national, but we didn't just walk in and say we wanted an amnio, we were seen by a nurse counsellor before who was very open to the idea of not having the test or having it just to know. I am sure she'd have needed to be pro-termination too, but it wasn't discussed when we saw her.

She picked us up on the fact we wanted to know rather than would abort,, and suggested we reconsider; then she left the room to fetch the Consultant but didn't go straight there, giving us time to bolt.

needmorecoffee, well said.

I think it is good that some flip-side articles are being published. Its so taboo to say you would terminate a baby with Downs and I dont think that that side gets heard often enough to present a balanced view

Both my DH and I decided to test and terminate if Downs syndrome was detected. A lot of people are very outspoken in the view that people like us are ignorant and miss informed.

We have both worked (a lot) with adults with LD. We have seen what happens when parents die or get ill (and other relatives and siblings are busy with their own lives). We are sure that we would love a child with downs syndrome and would gain many hours of joy from raising it. What concerns us is what comes next - we feel that we've seen the future and its no life. So many of these previously loved happy children are at the mercy of a very institutionalised system which has ever decreasing funds and resources and increased volumes of users. The work force of "carers" are often very disillusioned and, well, the most tactful way I can describe an uncomfortably large amount of them is not nice!

But you are not supposed to say any of the above! The press is so full of people saying how much joy they get from their kids who have LD - it seems that we are not allowed to explore the cons

I am not saying that I agree with every single point in that article, but I am glad that someone is willing to speak out as admitting to being on that side of the fence is so taboo

Salbysea - What does happen to them?

My ds has the same syndrome as India Knights, and I am baffled some of this thread. I am not actually against abortion but saddened by terminating a much wanted baby because of imperfections. Ds2's condition wasn't picked up and we didn't get a diagnosis untill he was four.

In all probability he will live and independant life, with a few aids.

The damaged baby, damaged family is actually so vile that it almost made the article unreadable and any point she was trying to make void.

"In all probability he will live and independent life, with a few aids."

I know that there is that end of the spectrum, but everyone knows about the "success stories" as its okay to talk about people with LDs or brain injuries who go on to live satisfying lives

My point is that there is another side - another HUGE group of people who, in my opinion, are merely surviving and not living. This includes both people with severe LDs and people who acquire brain injuries in later life. I have seen so many people in this group living "lives" of misery. Only getting human contact when they need feeding or changing, being met with impatience from their "carers", living in unstimulating environments. And as funding decreases and demand increases, I dont see how the situation can go anywhere but downhill by the time any babies I might have reach adult hood - or more importantly - by the time that I would no longer be able to act as their advocate.

Having had someone dear to me acquire a brain injury as an adult has only confirmed my views. Seeing the contrast between their full life before the injury, and the prospect of a life in care after it, I cannot consider a life that compromised to be worth while for the person who is "living" it

SalBySea interesting (and scary) post. I do hope(for my sake) someone comes on and tells a happier tale.

Oh there are happier tales 2ASFS
what concerns me is that the happy tales are the only ones its socially acceptable to tell - its the only side of the story getting aired. Anyone who tries to advocated what has so nicely been dubbed a "search and destroy" attitude to antinatal testing is ignorant and misinformed and should be silenced

How can ANYONE make an informed decision if only the pros of continuing with the pregnancy are being promoted?

India Knight in the Sunday Times today

SalBySea well I only want the happy ones, I will have to put dd in residential care when she is older. so scary ones scare me.
thing is imo too much emphasis is made on DS.
yet nothing is done to stop the negligence that happens regularly in hospitals, resulting in brain damaged babies, stop that and there would be more money in the pot for care for people with ds.

Sal, I think you make some good points about adult care BUT I'm afraid the pro's of continuing a pregnancy of a child with DS or other similar syndromes are rarely promoted by HCP's.

The people that are living the reality of raising a child with any kind of disability are surely going to give the best version of what it is really like? I can tell the hard parts and have posted a couple of threads in SN in the past when difficult decisions have had to be made. It doesn't change the positives though.

On another note, because it is scary what you have posted about adult care, is what then can be done about changing this? I have read lots of comments from other posters about how difficult a life adults in residential care can have, but these are rarely followed with advice for the parents on here about what we can be doing now to help.

emkana I love that woman

Yes, India Knights reply today is great.

thank goodness for india knight.
people with down syndrome are not a burden on society, they are the most sensitive barometer of how healthy society is.