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?

...sorry that should say: terminating a baby which is much wanted, and viable, but disabled...

Oh, completely agree SSB

My mil has two daughters with severe SN.

She absolutely adores them, and fights like a tigress to make their lives as good as possible.

Yet I have heard her say that if she had known what was in store, and if tests had been available, she would have terminated her pregnancies, and that any woman should do the same.

I find this a bit of a shocking paradox. Anyone else heard attitudes like this coming from a mum with SN children?

'So why focus on one.'

Erm, because I thought that's what the thread was about - disabilities that is.

Given that is the case it's probably sensible to focus on it isn't it.

My point is that people were suggesting that life with a disabled child or a disability is nothing but joy and richness and glossing over the very real problems or dismissing them or trivialising them.

The stats on depression are just one more piece of evidence which proves the absolutely blindingly obvious - that living with a disabled child or disability is hard.

Or looking at it another way it's one more piece of evidence for you to dismiss and trivialise in order that you can continue to argue (increasingly bizarrely) that no, indeed living with a disability or a child with a disability is pretty much problem free

'Possible issues with finding appropriate school and childcare

Ballacks to that one! Not an issue at all. Never ever heard of anyone having a problem with this. Sure if there was there would be an uproar and problem would be sorted. Children with DS do very well in mainstream education.'

I think you'll find that there are many people who have enormous problems with childcare and appropriate schooling. Perhaps have a look at some of the very many threads about it??

Hey, everyone, I'd love to think I AM completely wrong about all this. Actually being disabled or having a disabled child is a breeze.

Unfortunately there is really quite a lot of evidence that this is NOT the case.

Again, what is quite bizarre is that it seems that only on this thread to all the problems become trivial or disappear even.

Sadly they reappear under the Special Needs section on this site and in RL.

Hmm, wonder why that might be.

The rather sad irony about all this is that so many parents of children with disability and people with disabilities spend so much of their time campaigning to get their problems acknowledged addressed.

But when someone does acknowledge them it's oh no, travelling to China? Easy. Heart defects? What's your problem with that? Being blind? Hey, no big deal.

Finding it increasingly bizarre.

"Sadly they reappear under the Special Needs section on this site and in RL

Hmm, wonder why that might be."

prolly so we don
't have to waste our time arguing the toss with folk like you

'5candles insulted anyone with depression with 'No I don't think that my dad had some sort of personality defect. '

Depression is not a 'personality defect'. Its a disease.
How insulting.'

Absolutely agree with you riven. This was not MY view. I was arguing with the poster who suggested that people with disabiltiies who suffer from depression have some sort of flaw.

As opposed to the fact that some people find their disability especially where it causes pain, immobility etc quite depressing like my dad.

Once again, it would be helpful if you understood what you've read before commenting on it.

You are now being deliberately dense.
( I hope deliberately actually).
What a pathetic charicature of what parents are trying to say.
Several parents have saidthey can't travel. several parents have repeatedly said that life can be challenging. What they have been saying is that the idea that life is effectively ruined by facing those challenges is wrong.

It is awfully clever of you to constantly misinterpret. Have you ever thought of being a politician. They also always know what is best for everyone else as well. I think you would be fab.

Patronising, superior, sanctemonious, humourless. Yep. Ticking a lot of boxes

Oh dear God do I have to communicate in words wit one syllable:

'So the fact that you have a happy life is lovely but is entirely irrelevant for someone else making her own decision about whether to go through with a pregnancy for example."

I was very struck by this remark of fivecandles'.

HOW is it irrelevant? If I had known before I gave birth to DS3 that he would be quite severely autistic, then jimjams' experience, views, feelings and emotions would have been anything BUT irrelevant to me. How could it be otherwise? And yes, obviously I would also listen to any parent of a child with severe autism who said: "Listen, it's hell. You'll never cope. Have a termination." But why is the second view more relevant than the first, happier one? '

ONE person's experience is irrelevant in terms of how another person might feel or choose to act.

Your favourite colour may be red. Absolutely irrelevant when I am deciding how to pain my living room.

NO fiveandles no-one is saying that it is problem free. I have pointed out repeatedly on here that life with my son is harder in a practical sense, there are many places we can't go and things like childcare are much harder to organise for him. I (and many others- pagwatch very clearly above) have said that the problems don't make our lives any unhappier. In fact I would go the opposite and say that I believe I am happier than I would be if DS1 was not severely disabled.

Why? Because he has given me perspective I would not have had, I am doing work that I enjoy that I would not have been doing, and he has introduced me to experiences that I would not have had but that have been a lot of fun. Quite simply I laugh more because I have him.

I truly don't think that you understand that experiences (thing you do) with kids with learning difficulties or other disabilities are not second rate versions of things you would be doing with NT kids. Often, ime the atmosphere is more lighthearted if you get a bunch of families of kids with LD's together.

Bobbiewickham- the only people I have come across who have said that have children with severe degenerative conditions where they have basically had to watch their child die. Otherwise no it's not particularly something I've come across although I have certainly come across people who have decided they would terminate a future pregnancy if a disability was found, or more commonly tbh people who have decided not to have anymore children as they feel any sort of sibling (NT or disabled) would impact negatively on their disabled only child.

Sorrt this is a very late contribution and apologies if I'm repeating things.

When I was 20 weeks pregnant with DS#2 the scan showed up soft markers (CPCs) for Downs and Edwards syndrome. A week later a more detailed scan showed they had reduced a little. I was told that the likelihood was very small that there's be anything wrong but with my age as an additional marker they couldn't guarantee that. We turned down the offer of further tests because of the risk of miscarriage. And because were fairly sure that we wouldn't terminate the pregnancy anyway. That was our reasoning for rejecting double-tests during my previous pregnancies.

The only thing that bothered me about having a child with Downs was that when DH and I were dead and gone, or past the point where we could care for him, who would be responsible. I was afraid that his older siblings might take on that burden, because they felt obliged to, rather than because they wanted to. It seemed a decision that would have future consequences for children that were too young to understand at the time.

Incidentally the consultant told me that they had had a policy of not always flagging up CPCs as markers because they are so unreliable and it caused such turmoil and upset, and could lead to the termination of healthy pregnancies. But they had failed to do so on one occasion, the mother gave birth to a baby with Downs, and she sued. She was a nurse at the hospital. So they erred on the side of caution now.

So you never discuss life dilemmas or situations with friends who might have some insight then Fivecandles? You must lead either a very lonely life or a very absolutist one.
Mumsnet is full of intelligent women listening to each other, seeking each other out for advice, support and information. It's a community. Most weeks there are threads from women with worrying scans or bloods doing just this. It cannot be that odd a thing to do.
The analogy of painting sitting rooms is not very appropriate in the context of this thread IMO.

I thought it was unusual, jimjams.

She is a very complicated woman.

Fivecandles

"HOW is it irrelevant? If I had known before I gave birth to DS3 that he would be quite severely autistic, then jimjams' experience, views, feelings and emotions would have been anything BUT irrelevant to me. How could it be otherwise? And yes, obviously I would also listen to any parent of a child with severe autism who said: "Listen, it's hell. You'll never cope. Have a termination." But why is the second view more relevant than the first, happier one? '

ONE person's experience is irrelevant in terms of how another person might feel or choose to act."

So why on earth are you banging on repeatedly about all these miserable parents who are confessing that they wish they'd never been saddled with their terrible burdens then? They must be completely irrelevant to anyone else.

I'm not sure how anyone is meant to make a decision about how a disability in a child would impact on their life if they're not allowed to talk to those. Or do you want to vet anyone and make sure you show the dreadful dreadful side.

I'm beginning to feel as if there must be something wrong with me for daring to be happy whilst saddled with a dreadful child who must be holding me back from everything. Perhaps when I wake up tomorrow (- more than 7 years post diagnosis, more than 9 years after ds1s birth) I'll remember I;m meant to be miserable and everything I do with ds1 is worthless compared to my proper life with ds2 and ds3.

as per usual fivecandles you've taken what you want to hear from posts and made them into fodder for your not very convincing, or inteligent arguments.

At no point did I say that people who suffered from depression over the disabilities had personality flaws. What I said was, some people are prone to depression. There doesn't have to be something wrong in their lives for them to become depressed, so there's always a chance that some disabled people who become depressed over their disabilities might have become depressed anyway, even if they'd never become disabled. In fact there are some people who have depression who then cope remarkably well in times of crisis.

I have an aunt who suffers from severe depression, to the extent she has episodes where she hears voices/imagines things. She has had the most horrendous things to deal with in her life.

When her eldest ds was 18 months old he pulled a cup of hot coffee over himself and was severely scalded. He had to spend months in hospital and the treatment he was given left him partially deaf (he leads a totally normal life though). She then went on to have another baby who turned out to have a hole in her heart. She was operated on at 3 months old but sadly died on the operating table. She then went on to have another baby, and when he was three he was diagnosed with luchemia. He had to undergo numerous treatments, and the cancer went into remission but it came back when he was 10 so he wasn't actually declared cancer free until he was 16.

Through all this she has been a tower of strength, and has coped amazingly well. It's only when she doesn't have things to worry about that she has these episodes. And just to add, she had the depression before she had children so it wasn't brought on by things that happened to her.

"Absolutely agree with you riven. This was not MY view. I was arguing with the poster who suggested that people with disabiltiies who suffer from depression have some sort of flaw."

Is that a willfull misinterpretation of what I said? I said that when research (not me- research - read the literature on it) has looked at the impact of live events such as acquired disability on the likelihood of triggering a depressive episode they have found (unsurprisingly) that is complicated. There are many other factors involved in depression than life events. Two bigs ones being genetics (some people are more susceptible 'chemically') and social support. How you can interpret that as me suggesting that people are flawed if they become depressed after a life event I don't know.

I also repeated research which showed that acquired disability decreases happiness levels for a short time, but they adjust back to pre-disability levels remarkably quickly. And I pointed out that was at a population not individual level. And of course there will be exceptions.

You in fact seem to be suggesting that those of us who are perfectly happy despite our disabled children (and it's quite clear that you think it is 'in despite of') are the flawed ones and that actually if we'd only processed the awfulness of our situation then we'd all be miserable.

Well sorry to disappoint.

When we got DS2's diagnosis last year he was four. He has di-georges syndrome and intiially we were devastated. BUT that was because we didn't understand what the reality of living with a child with this would be like.

Yes we have lived with him for the past four years but we were looking ahead and frankly seeing doom and gloom for our beautiful child. I then joined the charity support network for the syndrome and spoke to other parents and met them and their children.

Suddenly it wasn't gloomy or quite so worrying. This is purely down to the fact we now understood.

I truly believe that it is a lack of information when testing ante - natally about the realities of life with a child with a disability that perhaps persuades people in a certain direction.

fivecandles, my practical life is more difficult because of DS2's, (fairly minor in comparison) difficulties. It is. I cannot deny it. It isn't however lacking in fullfilment, happiness or joy.

On a slightly different note about other peoples perceptions of disabilities, we were at Thomas Land in the summer holidays and noticed there were a group of young adults who evidently had mental and or physical disabilities. One young man got off Thomas with his carer and began stroking the engine and had to be (gently) persuaded to leave. A lady behind me said 'oh how sad'. I just though look at his face, full of wonder and happiness. How can that ever be sad!!

tbh, I think right now most people seem to talk past eachother and misunderstand/misinterpret everything, willfully or not, not sure...but, just read the messages since last night and you are all going around in circles.

I don't think this is something that will ever be resolved anyway, because everyone will have different views for all kind of different reasons....and imo neither way to think is wrong.