Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

Depends what you mean by 'neither way to think is wrong'. I don't think there's a right or wrong answer wrt to termination (although I'm not sure that public opinion.
/medical advice aids people in making the right choice for them) but I do think that assuming people can only be happy despite their disabled children is completely and utterly wrong.

exactly what jimjams has said.

'What they have been saying is that the idea that life is effectively ruined by facing those challenges is wrong.'

And I have agreed that this may be the case for the some people maybe the majority countless times. BUT NOT ALL.

The worst thing about this thread is that it invites people to express their concerns about DS in comparison or together with having a children with other sorts of disabilities but when people do just that their concerns are dismissed, laughed at or trivialised.

Oh, you're concerned that your darling baby may have to have heart surgery? What's the big deal.

What you're concerned that a child with a disability may affect your lifestyle so that you may not be able to continue with your job and pay the mortgage or continue to travel or have some sleep at night?
My how selfish of you.

You're concerned that you may not have enough support or adequate equipment or childcare? Don't be daft.

Etc

Once again, these may not be issues for you or part of your experience (although people even on this thread have talked about how they ARE on anti-depressants, DO have frequent battles with 'the system' and fights against prejudice etc). Or they may not impede on your happiness or the happiness of your family but that doesn't mean that's everyone's experience. That doesn't mean that these concerns are not important to some parents and in some cases important enough to conclude that a termination is the right choice for them.

You rubbishother people's concerns and feelings and choices and then wonder why some parents feel ashamed of their feelings or reluctant to discuss them at all.

Why be so defenisve?

I have said countless times that if you are happy with your life and your choices that's wonderful. No one is questioning your choices or feelings.

What I don't understand is why you cannot acknowledge that other people feel differntly and make different choices and that's ok.

Some people decide to terminate their pregnancies because they are concerned about having a child with a disability for whatever reason. To assume that they don't know their own minds or are not capable of making this decision or are not intelligent or knowledgeable enough or whatever is wrong. When a woman says no then that is what she means.

I do wonder what over a hundred years of women's liberation has achieved when some women give other women such a hard time about their choices and may even think they're not capahble of making choices at all. How very depressing.

Then you need to reread the thread Fio. ALmost every concern that has been expressed has been rubbished or trivialised e.g. what 12 said about travel being ONE reason of many that might prevent her from having a baby with disabled.

What I have said about depression.

What people have said about heart problems and life expectancy.

No-one has rubbished depression. Just pointed out that the relationship between life events and depression is not a straightforward one. That (again for the millionth time) is not my or wannabe's opinion it is the view of research in this area. You can have a good cushion against life events triggering depression with various other factors (such as good social support) in place.

If politicians actually listened to what carer's need rather than decided for them then the social care system might well be able to provide an even deeper cushion against depression.

People have pointed out that heart problems are now treated (they never used to be) and therefore life expectancy is now much higher. You seem to be clinging onto out of date facts to 'prove' how dreadful all our lives really are and must be.

I hope you recognise that you are repeatedly showing on this thread that you believe those of us who have disabled children and are happy are only happy despite our children. I find that rather offensive.

fivecandles, the heart defects associated with DS are very specific and are usually cured with a single, safe operation.
Yes, the defects can be severe and dd2 was v. ill with heart failure as a newborn, but it was manageable and surgery fixed her heart. It's as good as an ordinary heart now and there's no reason why she shouldn't live into proper old age - life expectancy for people with DS has increased to near-normal.

So many of people's fears seem to be based on totally outdated information and hearsay.

'out of date facts to 'prove' how dreadful all our lives really are and must be.'

Look I'm sorry but this is more of the same - dismissing other people's concerns or trivialising them or suggesting that they're ignorant or misinformed.

It is not 'out of date' that over half of people born with DS have heart problems.

Please don't patronise me or tell me I don't know what I'm talking about.

'I hope you recognise that you are repeatedly showing on this thread that you believe those of us who have disabled children and are happy are only happy despite our children. I find that rather offensive.'

YOU REALLY NEED TO READ MY POSTS.

I have never said this or thought this. I have merely said that NOT EVERYBODY WITH A DISABLED CHILD OR DISABILITIES IS OR WOULD BE HAPPY.

Anyone can attack someone else based on a misunderstanding or misinterpretation or totalyl impagined version of their arguments.

Perhaps it's just too hard to deal with what I AM actually saying???

As I've said I do find it odd that the OP invites people to express their fears and concerns but then they're attacked for doing that or it's assumed they're a bit thick or misinformed.

I don't find it hard to deal with what you are saying because I think you are
a) a bit dim
b) deeply insecure ( or you would stop arguing obsessively with everyone who disagree with you)
c) incredibly smug and sanctemonious

and therefore I give nothing you say any weight whatsoever.

I do find that fact that you are mind numbingly repetitive, disingenous and priggish quite hard to deal with though.

Do you always find anyone questioning what you say so deeply challenging. Is that why you choose to teach - so that you can never be confronted and use authority to overwhelm anyone who disagrees.

Its a Doctor/Teacher god complex thing isn't it.
I know someone who had that and i have read about it so you have to believe me I know much more than you about this.
And I respect you views but will endlessly repeat this post proving that actually I don't respect you at all.

If thats ok
Because ultimately this is really all about me.

'No-one has rubbished depression.'

but it is being dismissed as a concern.

The fact that it is more common amongst people with disabilities would be ONE of my fears. Especially after experiencing it with my father.

Remember that's what the thread asked for. And that's one of my fears.

Maybe that doesn't tally with your experience. Maybe you can give me thousands of examples of people with disabilities who do not suffer from depression or thousands of examples of people who are not disabled and still suffer from depression.

But it is still a legitimate fear.

Thomcat
Thanks for the Simon Barnes link
Fab

proves my point really pag. You are NOT dealing with what I am saying.

The OP asks people to express their concerns about disability and when they do that they are derided, insulted, dismissed and told they are 'a bit dim'.

Just don't be surprised that so many women feel unable to talk openly about their feelings when they are met with a response like that.

can I just say....

I don't find it hard to deal with what you are saying because I think you are
a) a bit dim
b) deeply insecure ( or you would stop arguing obsessively with everyone who disagree with you)
c) incredibly smug and sanctemonious

and therefore I give nothing you say any weight whatsoever.

I do find that fact that you are mind numbingly repetitive, disingenous and priggish quite hard to deal with though.

Do you always find anyone questioning what you say so deeply challenging. Is that why you choose to teach - so that you can never be confronted and use authority to overwhelm anyone who disagrees.

Its a Doctor/Teacher god complex thing isn't it.
I know someone who had that and i have read about it so you have to believe me I know much more than you about this.
And I respect you views but will endlessly repeat this post proving that actually I don't respect you at all.

If thats ok
Because ultimately this is really all about me.

good god I have been out all day and yet fivecandles is still doing her "all about me" posts.
why does anyone bother to amsewer her you might as well bang your head against a brick wall.
some people are just always right

I am curious though if I am honest
Your posts are butt clenchingly tense and angry
It seems that you have lost any ability to respond with perspective and are furious that people do not agree with you.

It seems to me that there have been some astonishing posts on here - not least from Thomcat and Littlemydancing which you have mostly ignore in order to respond with increasing bitchiness and hostility to those whose posts you seem to view as a challenge.

Can you not see that?
It does seem a little odd and quite controlling really.
Especially when you have lost all perception that you are attacking mostly women about their lives with their very disabled children

If you reach back to some braod moral framework does that not strike you as even a little cheap and inappropriate.
Because you seem absoloutely ruthless about saying things that could be construed as deeply hurtful were it not for most people thinking you are just a bit weird and obsessed.

Even trawlling the SN borad to prove your point. Honestly - no moral compass in there anywhere ?

Have to feel sorry for anyone who feels the need to insult and attack people personally for what they are saying in response to a question.

Perhaps the OP should be reworded:

'Please come and tell us why you are concerend about disability so that some of us can judge you, dismiss your fears, experiences and huge amounts of evidence, make you feel like crap and make sure that you never, ever tell anyone about your concerns ever again'

Great jobs ladies. I'm sure anyone going for antenatal testing or whose had a termination or whose disabled or looking after a disabled child and not having a great time feels a whole lot better now.

is she saying that 2shoes? iv'e only read the first couple of pages of this, but fivecandles is making perfect sense to me.

daftpunk you are lovely.

and thinking about it - I am not sure there are many people posting here to whom this isn't a deeply personal issue.
We stick with long threads becausethey are issues which are central to our lives. That is why they become worth investing in iyswim

Except you? Why are you so invested in this thread if it is not simply to try and prove yourself right? And doesn't that register on your weirdshitometer?

would it not be worth stepping away for just a moment and considering why you should be posting obsessively about an issue which is not central to your life when no one else who is 'uninvolved' is and when almost no one agrees with you?

Doesn't that justify a moments reflection?

Have to feel sorry for anyone who feels the need to insult and attack people personally for what they are saying in response to a question.

ROLF

I am not insulting you because of what you said in response to the question.
I am attacking you for endlessly refusing to engage with any one who disagrees with you, for using the SN board to prop up your dodgy theories and for refusing to actually deal withthe topic but chooseing to persue your own agenda which is entirely about you wishing to be right.
And for not having a clue what you are talking about but lecturing those who do.

I'm sorry but you have a very odd attitude towards disability. It's not very inclusive, you seem to be treating it as a state of being that is totally different from the 'normal' world.

I have had pre natal testing as it happens, fivecandles. And I agree far more with what the posters you so vehemently disagree with are saying than the wholy negative view of disability you appear to perpetuate.

fivecandles I have to say I largely agree with what you're saying but I think you're talking to the wrong audience. People with SN children are not likely to agree that their lives would be better without their children when they obviously love them unconditionally because that's what happens when you have children. I also think talking about terminations in any context is difficult as it is such an emotive subject but talking about terminating due to DS(for example)to someone who has a child with DS is obviously going to generate an impassioned response.