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.

There's definitely a train of thought out there that thinks 'tests for trisomy clear - baby is 'fine' - when as smallwhitecat suggests that's not the case at all and baby can still be born with a whole host of other conditions. Or have a difficult birth and be in a similar situation.

I'm sort of of the opinion that if you think you can't handle a disabled/sick child then you really neeed to rethink the whole idea of having children because the truth is you don't know what you're going to get.

I don't think we are missing the point. Sometimes you have no choice, whether DS or anything else, because it wasn't picked up.

But when you get a positive test then it does become a choice and it becomes a positive choice to have the child. Some people, for whatever reason cannot make that positive choice. It's no longer the default option that you take what you're given. So for people with a positive result it does become a choice and one they are likely to have to defend. With the availability of testing people are going to ask 'did you know?' at some stage.

Others can't make the choice not to have the child, of course.

I agree, saggar.

Some of the most severely disabled people I know have conditions that could not be diagnosed at birth or appeared in or near adulthood.

Sancti - one of my friends is a neo-natal nurse who tells me it's not uncommon for SCBU to be looking after a baby with disabilities who is waiting for foster care because the parents have just walked away. Desperately sad. I really can't imagine how on earth anyone can do that. In the bad old days doctors would tell people like my Great-Gran to 'put the baby away, forget about it and go and have another one' but for people actively to choose to do that, these days, when they aren't expected to or encouraged to? Horrible.

lol Sancti

As well as looking at social care, I think they should also look at the child, not the disability and provide the correct support.

needa sometimes; and sometimes that sn will be related to soemthing up in the aprent's own lives that inhibits their ability to parent (I am thinking a child I know with foetal alcohol syndrome who was given up at as parents knew they could not cope and fight their own demons)

But sometimes not both parents feel that way and in teh case above only Dad was admanet and Mum just went along which I think is horrendously sad :( and may well have been sorted if Mum ahd felt that she'd ahve been supported had she told her H to take a short walk off a long plank....

I find it curious that people have such heated debates over whether or not to terminate due to DS dx.

Terminations are carried out daily on perfectly heathy foetuses, for a variety of reasons, some of them ridiculously flippant. Isn't this just as wrong/right?

My MIL was child protection officer in a residential home and dealt with the extreme end of DS. They were not happy, vivacious, smiley, fun-loving people. They were extremely violent, aggressive and non-verbal.

The spectrum of DS is vast, as people have pointed out. You might be lucky and have a picture perfect, high functioning, loving child with DS. You might not.

It's a difficult decision, whether to terminate. It's a decision that I have been extremely lucky not to have to make, and I quite honestly don't know which route I would have taken.

In response to the OP, I would imagine it's because of fear for the future, and it's not always a bed of roses.

Purenewwool - your post is out of order imo. Is the op supposed to search every area to check first and seize her moment? As wannabe said - there is nearly always someone going through this. Talking about it is so important because a lot of people don't think about it until they're faced with the 'do I have the tests question' and then it's much harder. If you are facing this situation then I'm pretty sure that opinions expressed here aren't going to sway you - nothing here is meant to pertain to a particular ongoing situation.

'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."'

that is such rubbish. my mother was a sn teacher for 30+ years. she dedicated her career to working with children with high support needs, shunning promotion over and again because she just wanted to be with the kids and get on with it. sn teaching is bloody hard work, often thankless and more often than not heartbreaking as it deals with health regression, degenerative conditions and death. i think teaching a child to tie their shoes or write their name, knowing its unlikely they will live beyond their teens or even the end of the school year takes a lot of strength and compassion.

my mum was pregnant with me at 36 and knew it was probably her last chance to have a baby (i am her only child). she demmanded the amnio (this was 1979) and was given on the condition she would terminate if it was positive. her reason was 'i have seen so much, i have seen what those kids go through (all children with additional needs, not just ds), i just cannot bring a child in to the world knowing that life will always be a struggle, i can't put a child through that just because i want a baby'

i think those that terminate ds children make very informed decisions, theres no ignorance about it.

i also agree with winterofthediscounttents - of course this is a difficult subject and i'm also sorry for any offense but come on, this is mn - surely this is a safe place where we can talk about taboo subjects?

I had amnio because I wanted to know if my child was going to have Down's so that I could prepare as much as one can for how it would have changed our lives.

I think the OP is asking a very good question. We do all assume that our children will be born 'perfect'. Obviously perfection doesn't exist, and so all of our children will present huge challenges at some time in our lives. But I think many people have the impression that the challenges posed by a child with a disability are far harder to deal with. I know I do, and when I read threads/ blogs/ articles written by people whose children have special needs, it affirms this belief. Like parenting any child, it's immensely rewarding and fun, but I think it would be wrong to say that it's not also incredibly difficult.

i dont think its about babies being perfect - i think its about risk reduction andi dont think thats wrong

' But I think many people have the impression that the challenges posed by a child with a disability are far harder to deal with. I know I do'

Interesting and valid point

FWIW I have two with ASD and whilst one I would say hell yes, the other not so: he is a joy. Interestingly the more severe is the easier to enjoy, but that's an accident of personality.

As for teaching kids with Sn- yes I think you need to want to do it; I do, one day a week ATM but want to do it FT when I can (then I might be paid LOL). It's something I like immensely but there's a million jobs I would hate so swings n roundabouts. I would not follow your mum's path (and note I have two with sn of my own- not DS, though have worked 1-1 with an adult with severely behavioural issues and DS- so kmnow some of it). But that again is each to their own isn't it?

In my case certainly it is not the behaviours of the boys- those are a PITA but can be lived with- but the bureaucracy that is hardest. Something society could actively do something about.

'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."'

I couldn't agree more wannabe. And it is fucking hurtful to people with SN/parents of children with SN.

People might as well just say 'Yeah, I want children, not one like yours though'.

Hmm, I think often it is a reflection of that but not alwys.

I know people caring for a very severely disabled child who had the tests as they knew they woudl struggle with 2 Sn kids- they'd manage if they ahd to but it would be stupendously hard. They loved their first child though.

OTOH you get people like my sister who will openly say in front of my boys (DS1 understands his ASD) that she doesn't want a faulty one.

It's really not as simple as that.

What's not? Nothing is simple in this debate is it?

"We do all assume that our children will be born 'perfect'"

we don't. I have a relative who was disabled at birth and lives a very independant life but that still wouldn't mean I personally would want a child with Downs - the tests are there (amnio etc) and I wanted to have them.

RE the blogs, at the risk of offending people there's nothing I want to read less to be honest. People do tend to send links to them but I have no interest in reading them.

but ultimately, people have hopes and dreams and aspirations for their (usually) planned babies. And then when a test shows that that baby has certain disabilities (I am not referring to conditions that are incompatible with life here as that is entirely different) those hopes and dreams and aspirations change. How does a baby go from being planned and wanted to unwanted in the space of a test?

It just seems so sad that the reasons given are so rarely about the child. "I couldn't cope; it's not fair on the siblings; someone will have to look after it" what about the baby in all this?

Computermouse yes I remember that ghastly woman. Afaik she shares my first name .

that's what pro lifers would say. personally I am not pro-life.

SanctiMoanyArse I can see why someone who has a child with disabilities might not want another with disabilities.. I personally know people who have actively chosen not to have any more children for this exact reason - I have a neighbour whose ds is severely autisticand she A didn't feel she could cope with another child (at all actually) and B didn't feel that she could cope with another baby who might possibly regress as her ds did. And actually in contrast to the people who wouldn't have a disabled child because of their able-bodied siblings, she didn't feel having another baby would be fair on her existing disabled ds as she felt that due to his sensory issues a crying baby would upset him.

When I was seven my mum terminated an unplanned pregnancy because she didn't want another disabled child. There was no knowing that the baby was going to be disabled - she just wasn't prepared to take that risk. She'd always known that was how she felt - so wtf didn't she go and be sterilised earlier on?

I imagine that many of the children of people that make these decisions don't have the capasity to understand the concept of a parent having a termination because they don't want another baby like them. But I can tell you from personal experience that the impact of knowing that someone terminated a pregnancy because of me is severe.

'But I can tell you from personal experience that the impact of knowing that someone terminated a pregnancy because of me is severe'.

It wasn't because of you, Wannabe. She made that decision for herself, and her reasoning was poor in the extreme.

Don't carry the guilt for someone else's choice. She had no right to blame you.

Wannabem what on earth posessed her to tell you something like that?! She should never have told you.

i'm sorry but it isnt like that. people stop having children at what they think is their capacity whether they have 1 or 6 children - even if they are all nt. obviously the best case scenario is preventative birth control but accidents happen. if aborting a ds child is wrong then aborting all babies is wrong full stop.

i think terminations are very hard emotionally but they are always the best decision if there is any doubt over whether that child can be accomodated for all reasons