Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

[LesAnimaux]

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

[edam]

wannabe - everyone has to make their own choice about their own bodies and their own families. My decision, if I faced one, would be about my circumstances and my experiences. Not a judgment on anyone else.

[hellymelly]

I should add that my feelings on this are coloured by my best friends's son,my Godson,who has very severe autism and will never be able to live independantly .He is a very much loved and wanted boy who is valued completely for himself, something which I try to remember when parenting my own children.I understand that people's circumstances vary hugely,and that parenting a child with a disability can be extremely hard. I feel sad that society is so unaccepting of difference and that parents have to battle for any tiny bit of help.There does seem to be a medical push towards termination and that does really bother me,but I am not judging any individual who has made that choice because it is a completely personal one.I really wish that there was much more support for the parents and children who need it.

[CoteDAzur]

I wouldn't abort for most disabilities but I would abort for those affecting mental capacities like Down's Syndrome.

[GrendelsMum]

My cousin has DS - he's now 35 or so - and the thought of his future is very stressful for my aunt, especially as she had him later in life and her DH died when he was young. She loves him dearly (he's a very nice person), but she's very aware that before too long she won't be able to care for him as she has done, and he'll then be (comparatively) alone in the world.

[Bunbaker]

"people are kidding themselves if they think that a termination for disabilities is not a reflection of how they personally feel towards people with disabilities. Of course it is. It's a very nimby message - it says "well yes, of course there are people out there with disabilities living their lives, I just don't want them in my life." "

Utter nonsense. I think most people feel that they will be unable to cope. Plus there is the future to think of, especially if the parents are older.

[devientenigma]

"some people do find it incredibly hard to cope with a child/adult with DS (or other 'disabilities') - I am sorry that there is no easy way to say this but it is true; I know a number of people with children with DS - some cope brilliantly, they are outgoing confident people and bring their child up to be outgoing and confident; others do not cope - they (and their child - plus other children) can become socially isolated, they are frightened to go out, have no support network etc etc (yes, I KNOW that society is at fault for not being more understanding & supportive but that doesn't actually help these families does it?)."

I disagree, We are a confident family, who cope most of the time, however we are a socially isolated family due to my sons needs/issues, even isolated by family and networks of disability etc. This has nothing to do with us but the hand we were dealt, there is nothing we can do to change his issues. It's also the system around the child that can let the family down leading to isolation etc. Hope that makes sense. As I am trying to post, I have my son who happens to have DS banging off walls for his dinner, he isn't capable of doing it himself and he doesn't understand,......in a min.

[devientenigma]

"some people do find it incredibly hard to cope with a child/adult with DS (or other 'disabilities') - I am sorry that there is no easy way to say this but it is true; I know a number of people with children with DS - some cope brilliantly, they are outgoing confident people and bring their child up to be outgoing and confident; others do not cope - they (and their child - plus other children) can become socially isolated, they are frightened to go out, have no support network etc etc (yes, I KNOW that society is at fault for not being more understanding & supportive but that doesn't actually help these families does it?)."

I disagree, We are a confident family, who cope most of the time, however we are a socially isolated family due to my sons needs/issues, even isolated by family and networks of disability etc. This has nothing to do with us but the hand we were dealt, there is nothing we can do to change his issues. It's also the system around the child that can let the family down leading to isolation etc. Hope that makes sense. As I am trying to post, I have my son who happens to have DS banging off walls for his dinner, he isn't capable of doing it himself and he doesn't understand,......in a min.

[devientenigma]

don't know what happened there

[SanctiMoanyArse]

I would want to reiterate what computer said (IIRC) earlier on: if youa re adament that you could not cope with a disability you should rethink / wait a bit before having kids, becuase some of the very most severe disabiltiies happen at or after birth; and none of us is more than a bus crash away from disability.

Now, I don;t mean 'want to have to cope'- nobody does, do they? But you have to be able to pull on a certain inner resource because it can happen to anyone and if it does it's your responsibility to sort it out. far from what some people think, there will not be anyone turning up from taxpayers funding to help or solve it: it's you, your child, and if you are lucky you'll have a dh who hangds about (something like -80% of amrriages where there is Sn fail).

[SanctiMoanyArse]

'There does seem to be a medical push towards termination and that does really bother me,but I am not judging any individual who has made that choice because it is a completely personal one'

Sort of agree

I do think as I said earlier that many people don;t have any experience of disability and that the unknown is often mroe scary than reality; that's only solvable by widening society to allow disabled people into it's midst (ie no cats bum faces when a child screeches in Asda, or complaints about funding for TAs at the kid's schools).

Also when I ahd my high risk result for ds3, albeit 8 years ago (he's 8 in the summer) Dh and I both felt very much under pressure to have amnio and terminate if positive; certainly we took several phone calls from MWs advising us to go to the clinic and book in for amnio just to have the chat yet the amnio nurse counsellor told us if we weren't likely to terminate, walk out before the consultant arrived becuase once he did there was no getting off that jugganaut.....

I had no issue with being offered the tests but didn't appreciate the pressure. Had ds4 in Wales and was subjected to far less.

[SanctiMoanyArse]

Fanjo.



I do think th topic needs talking about though: DS is one test: theya re striving for otehrs. The one speople rave on about wrt to ASD are still not rlaity but if they were? Would we wipe out the maths geniuses with the severely disabled chidlren (that's not my example, it's Baron-Cohen's in fairness, ARC Cambridge). For every severely disabled asd child there is ten or probably more with a mild presentation who goes on to have a full life.

Yet a test for X gene or Y abnormality (yep, that's how far away we are from it!) could not tell you how it woudl affect.

So it's a chat that needs to be ahd, with sensitivity on both sides.

[devientenigma]

But even tests can go wrong, Sancti. I had DS on the front of my notes with dh niece being DS, though nothing was picked up for us until after birth, after finding the heart condition. So even with all the test there could still be a possibilty of disability. IYSWIM.

[Debs75]

I think the reason many parents seem to not want a baby with DS is because it can be tested for so parents who are worried about DS and any extra strain on their family they feel it will add have the tests then can terminate if they feel that is the right thing for them.

I know a couple whose first 3 pregnacies tested positive for Cystic Fibrosis so they terminated all 3, 1 at 6 months. That really got to me as she put herself through so much pain so she could get a 'normal' child.

I was offered the test with my last 2 pregnancies as I was over 30 but as I already have a child with ASD I knew I didn't need to know if there was a chance my baby could be disabled.

From personal experience watching my child regress before my eyes and then be taken over by Autism was one of the most scariest things I have ever gone through, especially as there was nothing we could do to halt the changes. If he had been diagnosed before birth then at least we would have an idea of what was going to happen. It wouldn't have made the outcome any different but at least we would be forewarned.

I do feel sad that years ago disabled babies were left to die or taken away from the family like they were a burden. My grans friend's son was forcibly taken from her when he was diagnosed with Autism and placed in a home until he died. Then we have had parents who wouldn't give up and DS and other disabilites became more visible as they fought to keep their children at home and fought for the care they needed. Now with in utero testing less DS children are being born so it is being hidden away again.
IYSWIM, too little sleep and getting muddled now.

[SherlockMoans]

I cant say why other people didnt but personally had I been given indications of a high chance of DS I would have terminated the pregnancy firstly I had never felt an overwhelming urge to have children at all and from my observations most families where a child has a significant problem end up being single parent problems (not all but a significant proportion)

There are other potential problems with ds i.e heart problems.

Worry about care after I die.

Obviously something may happen in the future to my children but I have already bonded with them now so I would deal with it better.

I thought you were asking about your son too!

[peeriebear]

My sister has Down's and at 11 is very hard work for my mum (she separated from her partner a few years ago and he has since died). My sister goes to a special needs school and has a mental age of around 4, yet is going through puberty. Coupled with that she has never conformed to the stereotype- "They're so cheerful and loving aren't they"- she is stubborn, rude, endlessly repetitive, wilful, sometimes aggressive. My mum didn't have any tests done because she would have not have terminated regardless. However she CAN see that other people feel the need to, and so can I. I have no idea what I'd do in that situation seeing how much of a daily grind it is for my mum.

[Debs75]

The worry about care after the parent dies is a very real worry. I don't see it as a reason to terminate but it is an added worry and some parents will see it as a valid reason to terminate
We have long worried what will happen to DS when we can no longer care for him. His elder sister flatly refuses to care for him but that might change in the future, he has 2 younger sisters but I worry how any of them will cope with him when he is middle aged.

[elliephant]

To those who aren't familiar with Kelle Hampton's parenting blog may I please refer you <a class="break-all" href="//bwww.kellehampton.com/log" rel="nofollow noindex" target="_blank">//bwww.kellehampton.com/log

[ReindeerBollocks]

Personally I know why people would abort and it's not always down to ignorance.

Sometimes it's being in a situation that is already fraught with worry and medical visits with the DC you already have, and the worry that you don't have enough time/attention/coping skills to care for another child with SN.

[candleshoe]

I child minded for a very, very difficult little girl with Down's - she died of a hole in the heart and other complications at 15. It was very difficult to cope with this girl even when she was only 7 because she was rough, aggressive, willful and very, very strong.

I am not ashamed to say that two afternoons a week with this little girl were enough for me and if I had had to choose whether to terminate under similar circumstances I would have done so.

[SanctiMoanyArse]

CS i'd never tell someone they were wrong to make that choice but I do think there's a difference; ds1 has a different dx but is violent, wilfull strong etc and I don;t know I could ask anyone else to deal with him often, but becuase he is mine I can, and I love him; love makes that difference IYSWIM?

Don;t get me wrong- I too ahev beenc arer for someone not related to me through work with severe violent ds so do know how that can be- but it's different from caring for ds1. or indeed ds3 who is non agressive but more severe. It just is,

[candleshoe]

I do SWYM but I still think I couldn't have done it - I have had mental health issshooos of my own in the past and I think it would've been bad for me.

[SanctiMoanyArse]

I am ot sure being relaistic about one's own abilities makes someone selfish CS- far from in fact!

But you know, i'm not all that eihter. I ahve breakdowns and cannot cope sometimes and all the rest: I just amke sure kids aren;t in ear shot and get voer it by the time theya re. Dh has had huge MH issues, and gets on with it. I think you probably would too but in no way would say you should feel bad if you decided you could not.

All decisions after all are selfish in some way- in having ds4 with an elevated risk of ASD we knew we were risking him being a state financial drain; in fact I think having kids full stop is alregely selfish- genes, environmental impact etc.

Selfishness isn't always bad.

[empirestateofmind]

My sister doesn't have downs but she is mentally handicapped and blind. The impact on our family has obviously been huge.

I have every sympathy for those couples who decide to abort. What a terrible decision to have to make.

I can't imagine the horror of living with that decision and do not feel that anyone has the right to judge.

[DastardlyandSmuttily]

I know some people have been upset by this thread, but I have to say as someone who is just starting to think about ante-natal testing it's hugely interesting.

One of my biggest concerns is that having a child disabled from birth would very quickly become MY issue, not a family issue, as ultimately my DH would have to go out to work, and I would have to stay at home as a carer, much much longer than I would intend to for a healthy baby. I feel that child-rearing is something we want to go into together, and share the load wherever possible. But all I can see is that it would very quickly become a 'child's life versus my life' debate. I don't yet know how I feel about that.

[WinterOfOurDiscountTents]

There are lots of things that can upset us as individuals, that doesn't mean other people can't talk about them.

I think you should all think yourself lucky you live in a country where you have options. I don't, here there is very little testing (private only) and no abortion for any reason even if you have the testing. You can travel of course, but thats a difficult process and little done for these reasons.

You'd imagine then that we might have better resources as we do have a higher rate of people with things such as Downs. You'd be wrong though, there's actually fuck all help for parents of disabled or differently abled children of any kind.

I have a friend who has a brother with DS. She loves him dearly and spends a lot of time with him, she's a great person. She also says though that she would rather never have children at all than have a child with DS. She's not ignorant, she's not naive, and she's not cruel. She knows the reality and she'll probably end up caring for her brother when her parents get too old. Can any of you balme her position?