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?

And depression is associated with childbirth, and moving and marriage breakdowns and losing a job and so on and so forth.

lisalisa - that's really interesting (and lovely). Mental disability has generally been replaced (in the UK) by learning difficulty or disability. In the US mental retardation is still used a lot (as it is in the literature).

In - I think mediaeval times- autistic children (not that they were called that then and I suspect many would have been learning disabled) were seen as closer to God because of their purity. I can't remember the details but there was a special name.

lisalisa that is very interesting,

'especially visual impairments who seem to think their lives are so unbearable.'

Never said that. What I said was all of the people I know and have known with disabilities had very real practical difficulties and some had psychological ones as well. Not all felt their lives were unbearable. Some were/ are very happy and fulfilled. Doesn't mean that the difficulties they experienced/ experience are funny or trivial or can be easily dismissed.

I teach a student with a visual impairment which just means she has to have text blown up so that's not such a big deal but one last year who was completely blind and needed a helper to get her from class to class and every text brailled which was a much bigger deal. I didn't know her very well so couldn't comment on her outlook but she did get very easily anxious because she couldn't see what was going on.

TC- I was talking to the older Mum of a grown up dc with DS and she said that it was easier having no choice and just having to get on with it (her other children have a choice and have no idea what to do).

Ohhh what a lovely post lisalisa in an otherwise getting slightly uncomfortable thread

I have lots of practical difficulties to deal with because of ds1. I recognise those practical difficulties and overcome them/accept them/get on with it as much as possible. They don't actually affect my happiness in any way and therefore pretty irrelevant.

I'm sure we all have practical difficulties, but if they're not affecting our happiness then their relevance is about zero.

oi expat - check your emails. I've sent you the surfing pics.

'And depression is associated with childbirth, and moving and marriage breakdowns and losing a job and so on and so forth.'

Oh, well that's alright then

BTW there's something right now on news about how hard it is to be disabled in China.

why on earth would she need a helper to get her from class to class? Why didn't she just get mobility training to teach her the routes so she could move on her own with the aid of a cane?

And getting texts brailled is really not that big a deal either - the RNIB will do it for free for professional organizations, schools, colleges etc.

good luck she keeps ignoring mine
shall I just send her loads of pics of
him

Glad you were able to make a bit of sennse from my post JJ

I didn't have tests with DD1 and am so, so glad that was the case. Yes it was a shock to be told my DD had DS and I had a day of sobbing and a few 'why me's" then I just on with the business of being a mum and have never looked back. Since having my DD and talking to other mum's going through the turmoil of 'to rest or not to test' I've often wished the whole testing thing had never been invented.

'They don't actually affect my happiness in any way and therefore pretty irrelevant. '

You, you, you.

Once again jim, that's great. I'm happy for you.

Once again, that's not everyone's experience. Look at the stats for disability and depression above.

jimjams did you get my email yesterday?

allright, allright, i'm going there .

had to help DH with this job application online.

he has learning disabilities. i should have just chucked him on the scrapheap and then i wouldn't have to help him with stuff like spelling.

Thanks jimjams for the correct terminology. I must say that I find this whole debate about the quality of life for severely disabled children ( whether physcially or learning disabled ) and whether they should be aborted/left to die at birth [horrified emoticon] tied in to the general trend towards eugenics, survival of the fittest, euthanasia etc and the ease in which som epeople belive life should be disposed of. The Nazis belivied in killing disabled babies at birth too. Is there any real difference in the practice advocated by that vile professor quoted ealier in teh thread of leaving such babies to die at birth/killing them in teh first month of life?

"BTW there's something right now on news about how hard it is to be disabled in China"

I think its quite hard to be lots of things in China.

My point about depressiion fivecandels is that lots of life events can trigger depression (although actually wannabe is right and the some have more 'inbuilt' protection against depression than others). So why focus on one.

Many people caring for a disabled child are living in poverty (an issue for the politicians) and that can trigger depression. A better social care system may be all that's needed.

omg I am bored now, how many time can one person copy and paste, and rip another persons post to bits.
?????????????????????????

'why on earth would she need a helper to get her from class to class? Why didn't she just get mobility training to teach her the routes so she could move on her own with the aid of a cane?'

I love the way that being the mother of a disabled child makes you able to comment on the needs of a disabled child you've never met!!

I'm not absolutely sure but I imagine that it was partly because she got very anxious in an unfamiliar environment. Our college is huge and has 2000 students who all move around at roughly same time. She needed the protection.

'And getting texts brailled is really not that big a deal either'

I'm glad you think not. The teacher who taught her (loved her and had a special affinity partly because her neice was the one with the cornea transplant) and had to make sure that every visual resource (videos) were transcribed and brailled and plan lessons weeks in advance so that everythng could be sent away to get brailled over a week before it needed to be used.

It was hours and hours of extra work. She didn't complain but it was incredibly difficult.

oh shit wannabe yes sorry. I read and then dashed to work or to get a child or something and forgot to rely. Yes I think you may be right. I meant to reply. Sorry!

lisalisa do you have any kind of NetNanny or children's blocker software installed? I think your computer might be preventing children from searching on taboo terms - this would include 'forbidden' I imagine.

wow copying and pasting is sooooooo easy

By fivecandles on Wed 17-Sep-08 21:58:02
jim, it's getting to the point where I'm just going to have to refer you back to what I've already written quite a few times. You're interpreting all kinds of weird and wonderful things without paying any attention to what I am saying.

Earlier, about 20 pages ago, riven & co were saying that they didn't believe there is anyone who could possibly have a disabled child and wish they'd had the option of termination following antenatal testing. I happen to know well one person very well who felt exactly this. I've read of others. There was a high profile celebrity in a magazine recently who said the same thing (can't remember who but her daughter had ds but had slipped through the net of antenatal testing and she wished she hadn't). It's a brave thing to admit and it's not surprising that people don't often discuss these feelings publicly not least because of the sorts of attitutdes prevalent here which must have the effect of making people feel ashamed or abnormal for having such feelings.

'But I'm not allowed to assume that other people with severely disabled children are happy'

And no this is not what I've said or believe. I've said for the zillionth time that your expereince, choices and feelings will not be the same for everyone.

You're either wilfully misinterpreting or just not paying attention to what I'm saying. I do think I'm being quite clear.

wow copying and pasting is sooooooo easy

By fivecandles on Wed 17-Sep-08 21:58:02
jim, it's getting to the point where I'm just going to have to refer you back to what I've already written quite a few times. You're interpreting all kinds of weird and wonderful things without paying any attention to what I am saying.

Earlier, about 20 pages ago, riven & co were saying that they didn't believe there is anyone who could possibly have a disabled child and wish they'd had the option of termination following antenatal testing. I happen to know well one person very well who felt exactly this. I've read of others. There was a high profile celebrity in a magazine recently who said the same thing (can't remember who but her daughter had ds but had slipped through the net of antenatal testing and she wished she hadn't). It's a brave thing to admit and it's not surprising that people don't often discuss these feelings publicly not least because of the sorts of attitutdes prevalent here which must have the effect of making people feel ashamed or abnormal for having such feelings.

'But I'm not allowed to assume that other people with severely disabled children are happy'

And no this is not what I've said or believe. I've said for the zillionth time that your expereince, choices and feelings will not be the same for everyone.

You're either wilfully misinterpreting or just not paying attention to what I'm saying. I do think I'm being quite clear.

wow copying and pasting is sooooooo easy

By fivecandles on Wed 17-Sep-08 21:58:02
jim, it's getting to the point where I'm just going to have to refer you back to what I've already written quite a few times. You're interpreting all kinds of weird and wonderful things without paying any attention to what I am saying.

Earlier, about 20 pages ago, riven & co were saying that they didn't believe there is anyone who could possibly have a disabled child and wish they'd had the option of termination following antenatal testing. I happen to know well one person very well who felt exactly this. I've read of others. There was a high profile celebrity in a magazine recently who said the same thing (can't remember who but her daughter had ds but had slipped through the net of antenatal testing and she wished she hadn't). It's a brave thing to admit and it's not surprising that people don't often discuss these feelings publicly not least because of the sorts of attitutdes prevalent here which must have the effect of making people feel ashamed or abnormal for having such feelings.

'But I'm not allowed to assume that other people with severely disabled children are happy'

And no this is not what I've said or believe. I've said for the zillionth time that your expereince, choices and feelings will not be the same for everyone.

You're either wilfully misinterpreting or just not paying attention to what I'm saying. I do think I'm being quite clear.

wow copying and pasting is sooooooo easy

By fivecandles on Wed 17-Sep-08 21:58:02
jim, it's getting to the point where I'm just going to have to refer you back to what I've already written quite a few times. You're interpreting all kinds of weird and wonderful things without paying any attention to what I am saying.

Earlier, about 20 pages ago, riven & co were saying that they didn't believe there is anyone who could possibly have a disabled child and wish they'd had the option of termination following antenatal testing. I happen to know well one person very well who felt exactly this. I've read of others. There was a high profile celebrity in a magazine recently who said the same thing (can't remember who but her daughter had ds but had slipped through the net of antenatal testing and she wished she hadn't). It's a brave thing to admit and it's not surprising that people don't often discuss these feelings publicly not least because of the sorts of attitutdes prevalent here which must have the effect of making people feel ashamed or abnormal for having such feelings.

'But I'm not allowed to assume that other people with severely disabled children are happy'

And no this is not what I've said or believe. I've said for the zillionth time that your expereince, choices and feelings will not be the same for everyone.

You're either wilfully misinterpreting or just not paying attention to what I'm saying. I do think I'm being quite clear.

I've taught a student with VI. It wasn't that much extra work. Being organised isn't my strong point, but it was nothing to make a fuss over.