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.

[devientenigma]

I haven't read this all properly, but am so glad donkeyderby and 2 shoes input.
Yes everyone has some suffering to a certain degree. Don't really have time to write as I have to go through yet another car magazine, naming all the cars. Just thought I would add another paper cutting
www.thesun.co.uk/sol/homepage/woman/real_life/article1978617.ece
Childs name is Brynley, yes my face is clawed to bits, he's not got a happy face with the cuddle and is better further down when he's not being touched, there are some minor indescrepencies in the story etc etc..
Enjoy...

[devientenigma]

Just also like to add, yes we hack his hair when asleep as he can't cut that either.

[cyberseraphim]

Thanks for posting that Dev - it's vitally important that people realise that 'Downs' or 'Autism' or any condition is not just one outcome and that's often far more useful just to look at the child and his or her needs, than to read too much into what the child is supposed to be like because of the dx.

[JackBauer]

Have come back to thread, adn while I have no personal experience of a child with DS or LD's and cannot really empathise on that front (although I can totally understand the anger of those that do) geekgirl has spelled out what I really thought.

By geekgirl on Mon 20-Jul-09 09:12:08
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?

That is what I found worse, that she chose to terminate and then blathers on about how they spent time with him and dressed him/buried him etc etc. I honestly didn't think this was an option for a termination, more for stillbirth/miscarriage and I just feel very uncomfortable with it. I don't really know why.

[2shoes]

devientenigma thanks for the link.
he is lovely. nice to read a "story" where the dad has a positive attitude.

[BalloonSlayer]

Utterly agree JB (and geekgirl) and the football comment was jaw-dropping. As I said before I just can't get my head around it.

I am so glad of this thread for that article upset me so much when I read it yesterday. I came on to Mumsnet and looked to see if someone had started a thread. Eventually someone did (thank you OP - didn't have the nerve to myself). Until then I had wondered whether I was the only person who felt like this (although DH agreed with me).

Reading a woman relating how she took a drug to stop her baby's heart - at her own instigation - then going on to say that they had "lost him" was profoundly disturbing.

Also can't help wondering why the hell the article was in the Style section.

[JackBauer]

Dev, that is a lovely article, thank you for sharing.

Balloon, I think the big problem I ahd was if you replace DS with Anencephaly (for example) then it would be very sad and tragic, but as it is not normally a life limiting diagnosis (DS that is) then I felt she was wanting sympathy for her choice. Which I cannot give I'm afraid.

[saintlydamemrsturnip]

I wish there wasn't such a focus on success=mainstream school/normal life; anything else=failure. My son is at an SLD/PMLD school - and will require 24 hour care for the rest of his life. His behaviour is challenging, but I don't think he's suffering and although he has had a huge effect on the family it's a mixture of pluses and minuses and no-one is suffering.

JB- I do know what you mean. The first time I came across the whole naming/dressing etc I was fairly stumped as well. (Here I am specifically talking about DS, think it's different for other conditions). I can quite understand why people would terminate, I find terminating then dealing with as a stillbirth a bit odd - it feels like lying. Although have come across it on numerous occasions now and it seems to be fairly normal. I can understand why that would be encouraged for a condition incompatible with life and I guess it's just an extension of that and seen as part of grieving.

[devientenigma]

Although DS is not life limiting, some born with medical issues are life limiting/threatening etc.
I know quite a few DS kids who have been to hell and back including my own and a few who have died due to their medical history. So although you are right that DS is notlife limiting its the issues/probs that come hand in hand that is.

[2shoes]

see that is where I get lost.
someone "chooses" to have a termination, they don't have to but for what ever reason they choose to.
it is that word choice, you have a choice.
so why then dress it up as something else.
it is not Like you have to have a termination. people can keep a disabled baby.
surey onece the choice is made you have to be responsible for it and own it. all the talk of "loosing the baby" really is just a lie.
(not being harsh for fun, but I really don't get it)
if I got pregnant now, I would have a termination, no tests no counselling, just that. I don't want any more children(nt or not) and couldn't lift another disabled child. which to be honest at my age would be a given. so if that happeed surely it would be something I would just have to get over.

[peanut08]

God, I have just been reading your comments but can't actually bring myself to read the article as I still struggle to accept that some people would think I was selfish for keeping my DS (who is currently just learnt to crawl and brandishing a clothes peg at the cat, suffering all the while of course (hmm)).
I went through a phase when pregnant after diagnosis when I felt like a freak for my choice. There were so many websites and forums to support women who had terminated but very little information for those who continue.
IMO articles like these do yet more damage in the struggle to make disability accepted in society

[peanut08]

And 2shoes, just wanted to say I agree with your last post and admit I don't quite get the "lost" baby thing either. I know someone who had a termination for DS (no major health or heart problems picked up) before my DS came on the scene. It was a few years ago and her life and mine a year on couldn't be different. She suffered so much from her experience (and still is as far as I know)

[peanut08]

Sorry that was couldn't be more different

[devientenigma]

Hi FioFio, if your post is directed my way for me adding the newspaper article, all I was trying to do was show another view of DS. At the time it was all hype on how "normal" DS is which was not the case for me.
I know kids don't cut hair, brush teeth etc but as my ds has a heart condition this can prove fatal. He is also full of anxiety and doesn't cope with a lot of things in life. However his cardiologist says we are to keep him stress free. He also has mobility issues which doesn't help for exercise from the heart point of view. I could go on and on. Although there has been a few positive comments about the article. My article wasn't the one in question at the beginning. Like I do say in the article I possibly would of terminated would I of known (tests was never at risk). DS is in our family although no where near as severe as ours.

[lingle]

Agree with everyone else.

[devientenigma]

Must say the 2nd newspaper article not the first that everyone is chatting about.

[saintlydamemrsturnip]

I don't think living with sld's gives a normal life. Ds1's life is certainly not normal and never will be. I think peopleboften equate normal and easy with happiness. I don't think that is true. Our life is much harder than it would be without ds1's disability ( or if it wasn't as severe) but I don 't think I'd be any happier. Given that he's given me a job I really enjoy I suspect I might be unhappyer without his disability in our lives.

[slightlycrumpled]

I agree that normal doesn't equate to happiness. The true extent of DS's LD's is not known yet really, although at the moment at worst they are moderate apart from communication which is severe. Even so we are far more content with our lives than many of our friends with NT children. There is perhaps an acceptance that life doesn't need to be perfect to be good or even great.

I once said that I would replace the part of the chromosome that is missing in DS2, but after giving it further thought I don't think I would. I mean I would do anything to help him speak, but what if making him 'perfect' changed the other parts of him that make him perfect to us, and make him... well him!

[Litchick]

I read the article on Sunday and was struck by how the woman knew her DP would not be supportive.
They are now divorced.
I wonder if this was the main factor - that she knew she would have to do it alone, which must be very frightening indeed no?

[devientenigma]

FioFio, thats good to hear you were not having a dig. My ds also has seizures although epilepsy has not been confirmed. Is your dd DS?

[HHouse]

Having read some of the sanctimonious, holier than thou comments on this thread, I can certainly understand why a woman would lie about having a miscarriage when in fact she terminated a pregnancy. I am currently awaiting results for severe genetic deformaties (I'm 14 weeks pregnant) and, take it from me, I'm currently in hell. If I do terminate it will be the hardest decision I've ever made. Nasty comments from people with healthy children / believe in God / strong relationships able to cope with disabled children are so heartless and inhumane. You cannot possibly understand the turmoil experienced by every woman who makes this heartbreaking decision. Have some compassion - not just for the child but for the mother too.