Article about Down Syndrome and termination in the Sunday Times today.

[saintlydamemrsturnip]

here

It starts with the sentence "Children should not be brought into this world to suffer". It then goes onto explain that the woman tested positive for DS and so had a termination at 19 weeks. And finishes with that chestnut about pressure on the other children.

Now I believe in abortion and believe that every woman has the right to an abortion for whatever reason. None of my business. But I do get cross with the oft spouted idea that people with learning disabilities 'suffer'. And I do feel that I am entitled to challenge that (without challenging the person's choice- not interested in their choice, but if they start talking about 'suffering' in public with no experience well.... ). I am now fortunate enough to know a lot of people with learning disabilities and I haven't yet met one who is 'suffering'. This is something I think that society needs to understand and people with LD's will never be treated equally whilst they are seen as suffering or people to be pitied who live half baked lives. My friend has a grown up son with DS and she recently attended his friend's engagement party. I asked what it was like when she got back and she said 'well you know, full of people with LD's so brilliant and a lot of fun' which just about sums up my experience of LD's.

And the stuff about siblings makes me cross too. DS2 at one stage got quite excited at the thought he could live with ds1 when older so he wouldn't have to marry a 'yucky girl', but now knows (aged 7) that is not expected of him. When asked what his future 'job ' is he says 'to sort out social services' and he also understands he can do that from Australia if need be. DS3 will come to understand the same. And meanwhile, yes there are things they can't access so easily because of ds1 but they also get a whole bunch of positives from growing up with a disabled sibling. Overall I think the effect of having LD's around them in their childhood will be good. Certainly they're happy.

There was a small panel on the page about a woman who kept her baby with DS, but predictably it wasn't given the coverage of the termination suffering children suffering siblings story.

That's what annoyed me about the article shells- it was saying that bringing a child with ds into the world is selfish because it leads to the child and sibling suffering. I really don't give a monkeys if someone has a termination for whatever reason but fgs don't suggest that someone who chooses not to kill their child is selfish. and don't make up the suffering line to make yourself feel better. All this woman had to say was 'this baby wasn't for me'. Fine and truthful. Enough, no more explanation needed.

I was surprised the woman who kept her baby was told it was 'incompatible with life'. Where on earth did that come from?

Yes, totally agree. Its the lack of honesty that is really vile and then the corresponding need for sympathy when what has actually happened is something shameful.

I think, anyway.

I think I've ventured into 'that' territory now 2shoes...

I have never ever boughtthe siblings arguement and it remains the factorthat annoys me the most.
parents need to make a decision honestly and not choose to be squeamish and blame a child who has no say.

When I had a conversation with DS1 about DS2 once he genuinely shocked me. I said that I would never want to loose what DS2 has taught me but that I would lift his autism in a heartbeat if I could.
Ds1 disagreed and said he would not want him changed or 'cured' but would wish him exactly as he is. He thinks he is an amazing young man who is filled withthe expectation of happiness and who generally enhances most peoples day. He thinks he is the least selfish person he knows and is incapeable of being deliberately mean.
I had to shift my thinking a bit and it made me realise that my desire for life to be a bit easier was behind that choice and not the happiness of DS2.

And if I may boast ( in a way I would not on the main board). Ds1 is an astonishing young man. He is handsome and sporty and enjoys life yet he has a seriousness and sensitivity I don't see in many other places. Aged 16 he still hugs and kisses me and his sinlings and asks about Ds2's care and wants to find a route in his own life that is positive and of some value. He is not 'worthy' but sees the good and the bad in life and does not wish to be dragged down by nonsense and commerciality and chasingthe next new fashion orthe popular trend.

Much of this comes from his life with his brother and HE WOULD NOT HAVE IT ANY OTHER WAY.

The siblings arguement is the worst type of method for avoiding any responsibility or recognising your own wishes.

If people feel they cannot cope with a disabled child or cannot deal with the experience then they should own that. It is a reasonable view and theirright. But by talking about suffering siblings they push us further into a victimhood that we do not want. They are trying to pretend that our lives are the way they see them. And as others have said if you challenge that you are seen as in denial. Its all bollocks

I do wonder how these siblings will feel when they grow up, to know that their parents used them as an excuse.

I really enjoyed reading your comments, pagwatch. DS1 is 6, but it would be great if I could say similar things in 10 years time.

There is a huge amount of affection between DS1 and DS2 which I tend to think would not exist to the extent it does without DS2's LD.

my suffering child is currently running around in the garden enjoying suffering the sunshine.
I really loathe articles like that. I am pro-choice and I do think every woman should have the right to terminate a pregnancy for whatever reason she sees fit - but please don't dress it up as a stillbirth or miscarriage or doing god's will [WTF?!]. What is it with these people that they can kill off their foetus and then dress him in preemie clothes and give him a teddy? And it's obvious she had very little information on DS - so she knew the extent of her ds's disability? Wow. That's not something anyone can determine in a living, breathing baby or toddler with DS, nevermind a baby in utero. Why is it always like this? There was a thread on MN many years ago where someone terminated their DS pregnancy - it was horrid, full of all this crapola about how she is doing the most loving thing for the baby, how the baby would have no quality of life etc., etc., with half of MN turning out to tell her she was doing something really loving and caring .
A frequent get-out-of-guilt-free clause in the case of DS is the heart defect lots of babies of DS have - but really, whilst it is a serious heart defect that would be fatal if untreated, it is also the most treatable and curable serious heart defect. A full repair is usually achieved in a single, safe operation.
And this stuff about being buried near the football ground? Well, she could have not aborted him and then he could be kicking a ball about for real...
I could go on and on really

at lagaanisace

I think I am actually just expressing what several ofthe mums on here regularly say about their 'siblings'.
There are posters on this thread who have lovely children who echo these views - so I am sure your DS1 will be the same . There is a level of protectiveness which makes the affection somehow deeper I think

The only line in that article which really made any sense was when she said 'James wouldn't have coped with a disabled baby'. That is what it came down to, they didn't WANT a baby with disabilities. Made me cross when they said they 'lost' the baby too, they didn't 'lose' it, they aborted it!
One thing I did wonder tho, they mentioned about the 'severity' of the down syndrome. Is it actually possible to assess severity that early on?

Another thing, children don't always suffer even with pain. ds1 is in pain, but I can't say he really suffers with it, he seems to be used to it! He has been limping all weekend, fallen down the stairs, unable to get in the car without help, but he still wants to do PE at school, and has a big grin on his face! ok, he had a few tears on sat, but most of the time he gets on with it!

no there is no way of assessing the effect of the extra chromosome in an unborn child or a baby for that matter, in the same way you can't assess what an ordinary child will be like.

chops- no you can't assess the severity. The best guess is moderate learning disabilities as that is the norm for DS. Some individuals will have severe learning disabilities and some mild. A few will be straight A students like this chappy here.

If a test shows that the baby has a 'mosaic' condition (where some cells are affected and some aren't) you would expect them to be more mildly affected, but you still can't predict really.

geekgirl- I hate all that pretending it was a stillbirth and god's will stuff as well. I don't have any need to know that someone made the choice to terminate (am always a bit at the number of people who tell me they 'would terminate' - er why on earth do I need to know that?) up to them, but don't them pretend you had no choice. Have the courage to stand up and say 'this was my choice', it doesn't need any further dressing up.

And if someone just says 'this was my choice' - fine I don't judge them. It's only when they start going on about suffering and siblings that I get as it seems like a judgement on our lives. Unfortunately we rarely seem to get a right of reply.

LeninGrad best left, I put that without thinking(it is my hang up)

so right stturnip, it is a choice that people make...
I have never got this "lost" or " gods will stuff"
(must go and buy dd's suffering sibling some trousers, he is suffering as he needs some new ones)

I didn't think it was possible, thanks for explaining.

fio, you are probably right, it doesn't actually sound like they did discuss it much!

Yes, it's the self deluding total lack of honesty that I abhor.

Maybe she just has to justify it on the grounds that it would harm her other children, just to get through the day because deep down she must know it was really about her and her husband not wanting to be part of the disabled world. I suspect she is only one of many women who go through life seeing DS people and always feeling dreadful and confused inside.

DS's siblings DO suffer - it is not easy living with a SLD brother with challenging behaviour who dominates the house and we have to work so hard to meet everyone's needs. We always talk about how easy it would be to have a - more able - DS child in comparison! But he has made us the people we are and given a depth and character to our lives and a sensitivity to LD which I wouldn't be without. I just can't say it's all positive or I would be as much in denial as this woman is.

I think there's a difference between suffering and recognizing that there are difficulties though. DS2 and ds3 can't go out for pizza or to the cinema except when ds1 is at respite and we don't fly, and they get told to wait when ds1 is kicking off but is that suffering? They're very happy, and really doing very well socially and academically at school and outside that I have to conclude that although ds1 has an impact on their life which is sometimes negative, it's not leading to any suffering.

And they like the pros such as getting to go donkey riding at a special centre as siblings iyswim.

But nothing worth anything in life is all positive.Surely all our meaningful and truly joyous experinces contain elements of effort or denial or disappointment.

Ds1 had many unpleasant experiences as a child and his life was not as easy as some of his peers.
But the joy and love he gets from his brother massively out weigh the negative. And the negative elements of his life withhis brother are not even close to approaching a reason not to have had DS2.

I have come to the conclusion that having a bit of a challenge and some difficulty in your life (for whatever reason) actually makes you happier.

everyone suffers to a degree though.
I suffered as a child as my mum was ill, or did I? in my memory it it a happy loved child hood, yet in my aunties it is a sad one...

Imo ds's childhood has been better cos of dd. he had a SAHM, a sister who adored him and still does, we have a better car and house than we would have had(HA an motorbility) there have been lots of thinks he hasn't done cos of dd, but who knows we might not have done them anyway.