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?

jimjams....we have it all wrong, we should phone ss and get rid, then we can all go on a big exciting holiday.
I will ring tomorow(don't know the out of hours numebr)
so come on folks lets ditch our burdens and go on a jolly

let's ditch them all at once, go on group holiday and then write a book on it!

we're going to be rich.

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 got it! group holiday . . . to CHINA!

"I've said quite a few times that you can't use your personal experience as a way of making conclusions about what OTHER people think, feel or should choose
any more than I can. Don't understand why that's such a difficult concept.". but you are using your personal experiences to point out that people can't possibly be happy with their lives either as disabled people or as parents of disabled children. So why is it ok for you to use your personal experience but not everyone else?

Here's a concept for you. Do you think perhaps, that it isn't the disability that leads to these people having such miserable and unfulfilled lives, but their personalities? Maybe they are prone to depression or sadness and the fact they now have disabilities in their lives mean they (to them) have something legitimate to be depressed about? If it wasn't their disability then chances are it might have been something else?

You talk of all these students with visual impairments for instance who hate living with their disability. And see I struggle to see why because I am visually impaired and really it's not that big a deal, really it isn't. I can understand the frustration of someone who has previously been able to do something and then loses that ability, but with time even those people can find new ways of doing things.

I can understand the frustration of people with progressive illnesses like muscular distrophy totally. MD is a horrible horrible disease and I wouldn't wish it on my worst enemy. And I would never dismiss anyone's frustrations over that. But minor disabilities such as visual impairment I'm afraid I just cannot see in the same light.

expat good idea. the book would be brill. and a film. wonder who will play dd, they have to be pretty

'we have it all wrong, we should phone ss and get rid, then we can all go on a big exciting holiday.
I will ring tomorow(don't know the out of hours numebr)
so come on folks lets ditch our burdens and go on a jolly'

If you dismiss people's opinions and concerns and deliberately misinterpret them it means you don't actually have to tackle what they ARE saying doesn't it?

Sorry I don't find it funny. I don't find it funny that you're suggesting some people choose not to have children because they'd rather go on holiday. I don't find it funny that you're suggesting some people here consider children with disabilities as 'burdens' when no one's said that. No not funny.

ooooh yes group holiday to china. only thing is, I don't have a burden to ditch - in fact some might say I was the burden lol. So could I burden you all with my presence?

'but you are using your personal experiences to point out that people can't possibly be happy with their lives either as disabled people or as parents of disabled children.'

NO I'M NOT.

Read my posts perhaps?

well I have ds of course but as he's nt I don't suppose he qualifies as a burden?

so who is writing the book?

see, i'll have trouble affording it once we jettison DD1 and don't have her DLA and extra CTC, wannabe, so many you can leave guide dog at home and take me instead .

i think Fio should write the book. it needs to make people laugh through their tears and all that stuff. ££££.

I have read half this thread with extreme interest especially the debate in the beginning about whether SN children are a burden etc.

In my religion ( Judaism) children who are mentally disabled ( please forgive me if I am using the wrong expression here- I thought for a long time but could not find a better sounding alternative) are considered very special souls. So special that one famous Rabbi from recently bygone times used to stand up for the Downs Syndrome boy who entered the synagogue to pray with his father. His explanation to his puzzled congregation ( they were used to not understanding all of the Rabbi's ways and actions but queired why this child and no other ) was that ,as the understanding of a DS child is more limited, their soul was on a higher levgel than the rest of us and they had less to work on down here and were more intrinsically perfect. Therefore, being on a tangibly higher spiritual level, the Rabbi found it appropriate and fitting to stand up for the chld and encouraged his congregations to do likewise.

In our synagogue there was a young man with DS ( now passed away sadly). He was teh light of our congregation - al;ways smiling and always cheerful and with genuine innner happiness and contentment. Older men used to go to him for a blessing which he bestowed with great enthursiasm and genuine feeling. He had infinigte patience with the children who all adored him - his pockets were always full of sweets for them and his heart full of love and his lap always empty and ready.

He was anything but a burden - in fact the exact opposite. When he passed away at the untimely age of 22 there wasn't a dry eye in teh synagogue. His parents were and are fantastic and truly felt privileged to have merited such a son and to have been chosen to have cared for him during his short stay on earth. They viewed it as an honour that such a soul be entrusted to them .

In Jewish law it is strictly ######### to terminate due to disabiulity ( there are circumstances where it is permitted due to incompatability with life - i.e. severe genetic disease where patient would die as a baby or where mother';s mental health will not remain intact etc) but generally speaking it is #########. Our children are taught respect and tolerance and that these SN children are special and are to be respected and treasured, certainly not aborted, viewed as burdens or hidden away.

one of the most succesful and sought after nurseries in my area is a Jewish nursery that educates "noramal" children alongside SN children purposely to teach tolerance and pateince. The "normal" children coming out of this nursery are, needles to say, pretty special themselves.

'Do you think perhaps, that it isn't the disability that leads to these people having such miserable and unfulfilled lives, but their personalities? Maybe they are prone to depression or sadness and the fact they now have disabilities in their lives mean they (to them) have something legitimate to be depressed about? If it wasn't their disability then chances are it might have been something else? '

Could you be any more offensive and patronising.

No I don't think that my dad had some sort of personality defect. I think the fact that he lost his mobility and ability to work (which he loved) and to be independent quite depressing. It's very common with MS.

Likewise my ex dp who had muscular dystrophy. I think what made him depressed was the fact that he was in a lot of pain and going to have an early death.

Likewise the student at my college who has to have 24 hr nursing and be put on the toilet with a hoist and two adult members of staff.

Do you think perhaps they should just cheer up and pull themselves together.

Unbelievable.

well as the dog wouldn't be allowed to fly, and I fear he may end up on a menu I'll go with you expat.

lisalisa thanks for sharing that. I find the jewish faith(sorry if not the right term) incredibly interesting.

oh god - we have strayed again...

DS and heart defects - the most common one - is the one dd1 has. It was very easily repaired - two open heart surgeries. Most children only need one. Two small patches to cover the holes in her heart and a couple of stitches in her av valve. She sees a cardiologist once a year - he has said - it looks almost like an unaffected heart. She does have regular check ups. The only other surgery she had - tonsils and adenoids removed and grommets inserted.

IN her schooling life - she has been at playgroup, sn kindy, mainstream kindy and this year mainstream schooling - she has missed probably three days due to illness. I know a number of her peers at school - mainstream school - who are far more affected by illness than she is.

As to heart defects again - I posted earlier my dh has a congenital heart defect and a heart condition - did not get diagnosed til he was in his 40's. That meant that any of our children automatically had a 1 in 50 chance of also having his congenital heart defect. Dd2 has been cleared - we are just waiting for dd3 to be checked when she is a little older. Amazingly dd1's heart defect is nothing to do with dh - more to do with the down syndrome. However funny - even though having a child with ds already can increase your odds of having another child with ds in subsequent pregnancies - my two younger daughters were more at risk of a heart defect than down syndrome and YET lots of people focused on whether they would have ds than a heart defect.

Now - I need to do the school run so will try and skim the rest of the posts and have to respond later.

wannabe how about canada then, we can have a swoon at the mounties.

'Studies have shown that symptoms of depression may be 2 to 10 times more common in individuals with disabilities or chronic illnesses, and depression is one of the most common secondary conditions associated with disability and chronic illness.'

OK, not just my experience then.
www.fpg.unc.edu/~ncodh/orchid/pages/depression.cfm

"I can understand the frustration of someone who has previously been able to do something and then loses that ability, but with time even those people can find new ways of doing things."

Ah now that's interesting as research into happiness shows that acquired disability causes a decrease in happiness for a short while but that happiness levels soon return to their original levels.

Fivecandles If you read what I've written, you will see that I have no particular issues with antenatal testing. I have big issues with the way it is carried out and the information that people are given, and I have huge issues with the attitudes towards learning disabilities in society. I think that the conveyor belt approach to antenatal testing doesn;t give women time to stop and think. For example in my first pregnancy we decided we wouldn't terminate for DS (my need to be a mother was very strong, I wanted a baby full stop) but we would terminate for trisomy 13 or 18 as these were 'incompatible with life'. Then before my 2nd and 3rd pregnancy (and so before we knew ds1 was disabled) I came across a website in memory or a little boy who had died from trisomy 13 aged 3 months and I was horrified. Because had I come across that website after carrying out a termination I would have been distraught. Living for 3 months is not incompatible with life in my book, and for me I would have done something that I would have found almost unliveable with. I wouldn;t want to medical profession to ever trivialise or fluffly cloud trisomy 13, but I would rather they would do me the favour of telling me the truth- which is that 90 odd % of babies with trisomy 13 die in infancy. Dying in infancy is not the same as incompatible with life for me. Being fully informed totally altered our decisions on future pregnancys.

If a woman chooses to terminate a child with DS, that's fine - but for their own sanity they need to have an accurate understanding of the potential capabilities of a child with DS. they need to understand that many perfectly normal non saint like creatures find having a child with DS to improve their life. And if they decide that its not for them then so be it. But give them the information. Currently people are painted a picture that belongs in the 60's and I worry about the future mental health of those who have been through it without having understood the facts relevant to their family.

Because for me - discovering the day to day lived in truth of trisomy 13 was enough to completely change my mind about decisions I would have made.

Of course keep antenatal testing, but offer it with couselling. Don't automatically paint a negative picture. My worry is for women who find out the positive picture after they've done something they can't change. Because tbh that would have killed me. If they know the positives and decide that termination is for them, then fine. Their mental health is safe whoever they meet in the future.

"Could you be any more offensive and patronising.". well I can try if you like?

If you'd actually bothered to read my post properly, something which you seem to want others to do so you might like to try it, my reference was to the students with hearing and visual impairments, especially visual impairments who seem to think their lives are so unbearable. I actually stated that muscular distrophy is horrible and I wouldn't wish it on anyone, but seemingly you chose to ignore that.

Gosh this thread is so huge and so complex I'm not sure I can really join in anymore.

But I might just say that this whole 'having a child with a disability isn't for everyone' thing - the vast majority of people would not choose to have a child with SN's and there is a small minority that become parents to a child with SN's and can't cope. BUT the majority just accept their child has SN's, are already in love with their newborn child and the hardships that come with having a child come upon them slowly throughout the years and they parents just accept that and think not much about it. I don't believe in the vast majority of cases that it's ok for some and not ok for others. I think that most people, habded their newborn child, who turned out to have SN's would love and care and adore that child, no matter what.

Not knowing before hand and just being handed this situation is I think the better option. You have your child and they have SN's, get on with it. You love them, the rest is just just life and you'll deal with as and when.

Knowing beforehand that x and Y might happen and that life is going to be hard sometimes and the whole grey picture that is painted of what it might be like - and then terminations are talked about and a get out clause is offered .....

And like testing for DS means that everything is going to be ok.
There are no guarantees in life.

I wonder why when I typed the word ######### it came out as hash key twice!!!

And that nursery i was referring to has a fantiastic Ofsted Rrpoet too.

And again!!! It was this word - f-o-r-b-i-d-d-e-n. HOpe it comes out this tmie and someone can explain teh spookiness of it not wanting to appear on screen.....!!!