Oh Gosh - I never realised this...

[pagwatch]

I saw a thread about a pregnancy with the possibilty of the chid having Downs syndrome. Don't normally click but thought the posters was looking for some support re liklihood of having a child with issues.
Anyway she is going to terminate - which of course is her choice.
But someone gently asked if she had considered the possibilty of keepingthe child and the responses were really aggressive. Then others joined in and it just seemed unessesarily hostile.
Being really dim I added that I didn't think the question was out of order but just that as the parents of children with disabilities we may have insight/knowledge that might be useful
Apparently that is grossly insensitive and terrible

Now if a woman has made up her mind I would never dream of commenting. Thats that.
But is it really outrageous and terrible and shameful to ask the question? As mothers do we not have insight into the very thing that a pregnant mother in these circs could draw on whatever her choice may unltimately be?

I was just so shocked by the hostility. It was as if the very mention of our children was offensive.

I am just going to hide that thread and avoid that topic. But the attitude was grim.
I know this is a thread about a thread but clearly cannot addthese views on there - especially as I have no doubt the OP is having a terrible time and i would not wish for a second to add to her distress. And please plaese please do not go to that thread - I am honestly not trying to shit stir - just trying to come to terms with the attitude.
So I put it here where I am hopefully amongst peers ( I very much doubt that any of the shouty contributors would have anything to do with the SN board)

Just made me glum in a way I haven't felt for a while. Thanks for letting me vent
Now please tell me why I am being foolish to be upset. Because it fely like being shameful, second class or something

sadly, pagwatch, it is an attitude that is seen often

I know you have contributed to vaccine threads, which sometimes descend into similar bigoted attitudes towards disabled people, and there have been a number of "nimby" posts about having SN children in mainstream schools too.

As you say, the attitude is sad, and there is no reason at all why the question that was asked on the thread should not be asked.

it has been shown beofre that it is actually quite hard to come across unbiased opinions on what to do following the detection of the possibility of disability in pregnancy. the natural assumption form most of society seems to be that one would obviously terminate. and yet, if anyone tries to offer a different view, it is seen as insensitive. it is a truly horrible situation.

I absolutely understand how you feel and feel pretty much the same after reading your post pagwatch - snubbed and second class, it feels that the concensus of the uneducated feel that these beautiful and perfect babies (all babies are perfect) arent 'worth keeping' which is very upsetting, because penny to a pound that is not the way they would feel if it was their child that they love that this issue was about.

I was wracking my brain and trying to work out why the hostility...

and this is only a complete guess (and trying to give benefit of doubt to the shouters), that possibly the lady in question has had a hard time trying to come to terms with a decision and its not a decision taken likely, to terminate. so questioning wether or not she is 'doing the right thing' may make the decision harder...? I dont know, im really only guessing. I have respected your wishes and havent gone digging up the thread, so i really dont know what was said.

I dont think pointung her in the direction of mums who have experience in this field is insensitive or terrible, but they are obviously going to be biased.

Of course, if she had the immediate reaction that she wouldnt possibly be able to cope and was terrified - not a reaction to be unexpected - then a gentle friendly nod in a helpful direction might be the thing to soothe nerves...

Really cant win either way unfortunately

I haven't read the thread, so am probably about to talk out of my bum. But.

I think 90% of the hostility on these threads is because they are abortion threads and the slightest thing will set them off. One side is calling the other a bunch of murderers, it's never going to go well. Yes the disability thing can get mixed up with it, but most people regard termination at this stage as a lifestyle choice. Too young for a baby? Terminate. Too busy with your career? Terminate. Relationship problems? Terminate. About to start uni? Terminate. Too hassled to handle severe disability? Terminate. It's not about the baby - or indeed the child. Most of the norms I know would terminate for disability at 13 weeks. But most of them are very anti late termination for disability and very supportive of the plight of disabled kids once they're actually here. It's probably doublethink. But that's how humans are.

All I'm trying to say is I'm sorry the thread upset you but please don't take from it that everyone hates disabled children. I genuinely don't think it follows.

Pagwatch, I know exactly the thread you refer to, and totally agree, I avoid it now, I found it totally extraordinary to read some of the views and hostility on there.

There have been a few of these threads that have left me openmouthed with shock.

I am left with the feeling that the posters do see children such as ours as lesser beings. Which is a travesty and a great shame.

Oh thank you so much all of you.
It is a HUGE relief to know I am not the only who finds it difficult. I think you have each expressed some really useful thought which have helped me.

I think the threads are defensive and i guess when we are so quick to aggresivly defend our position it is often because we are not as sure of ourselves as we would wish to believe.

I know that as a pre-SN mum I would have totally underestimated my ability to cope and totally undervalued what a fantastic child and young man my son would become.And all the things he gives to all of us.
It is a shame the benefits of our experience are so impossible to pass on.

I really do thank you all for taking time to reply.
Love this board

I saw the thread but thought there was no point me posting as it would just wind things up further, I think as r3 has said it's such a sensitive subject that any sort of comment other than "yes you are doing the right thing" can be taken very badly.

You are right TC and I have learnt that lesson. Will not comment on one of those again unless there is a poster who wants those kind of opinions.
I wish I hadn't posted. Didn't want to wind it up and regretted that it did.

( there should be a 'oh fark - pull post and return in time space continuem to point before I pressed post' button)

I don't think you ladies who posted on that thread did anything wrong.

I shouldn't be so judgmental, and I am pro choice, but the possibility of keeping the child didn't seem something that was considered.

I can't really understand terminating for down's syndrome. I can understand being upset though, but it's still a baby, still your child, just a little different from the norm.

I've no real right to judge as there are one or two conditions I would probably terminate for but I've never met a person with DS who didn't have a fufilling life.

I think the attacks in response to your gentle questioning were unjustified.

I read that thread and was itching to post the question that Riven did, but was not brave enough. I haven't read the replies but from the comments here glad I didn't. To post something judgemental would have been wrong but to just ask the question I think was sensible.

They are just being defensive. I asked my Paed why she had put something in a report that was not accurate and she replied with a stream of excuses bordering on the 'Who are you to question me?' agression/defensiveness. It is a waste of time looking at these threads but it's up to them to explain why they are being so defensive/hostile when it's more typically a normal human reaction when you know you have done something that you don't feel truly comfortable about. If it's all so normal and part of life, why don't they put an advert in the papers to let the world know and then throw a party to celebrate ?

Yes, I have foolishly read some of those threads and find that generally they go in the same way

• poster incredibly stressed due to scan results

-lots of sympathetic responses (of course) -someone with SN experience offers opinion -all other posters ignore that post as if it hasnt' happened.

Its the ignoring I find difficult. As if everyone has there fingers in their ears when SN kids are mentioned. As if our experience isn't valid.

Oh I am so glad for this thread.

I posted on another thread a couple of weeks ago after a poster had discovered via cvs that her baby had the same syndrome as DS2. I had to take a really deep breath to post to her and to try and offer a little insight to live actually living with the syndrome. To be fair she was lovely and her distress was obvious. Sadly she chose to terminate (her baby also had a heart condition) but it was the other posters that made me feel so low.

They were all talking about how you loved your baby more if you made this sacrifice. I truly wished I had not clicked on the bloody thread as I haven't actually been able to pick my mood up since. Nobody could love their baby more than I love him. I could cry now just thinking about it. It was the first and absoulutely the very last time I post on that kind of thread.

Blimey, sorry for terrible spelling! Was shaking whilst typing, shocked at my own distress over this. and

slightlycrumpled - please don't let the ignorance and insensitivity of some people upset you. Easier said than done I know, but it was the OP who you posted for and the OP who replied. The others are inconsequential.

Unless they have experience with having an SN child (and I have very little) then I don't see how they can talk about such things with any authority. And as for how much we love our babies, (well I must admit we did think DS2 was a bit ginger at birth, but thankfully he's gone a bit darker, so we love him now!!! ) bollocks quite frankly.

BR

Careful chocolate bunny, there are a few of us around with here with red-haired children .

When I had my 12/20 week scan with ds3, my really helpful MIL asked if the baby had ASD, and was I keeping it if it did. It was the first thing she asked me when he was born as well. Obviously, we don;t know, so thoughtless comments like this don't help.

And no, if I knew ds3 had ASD I wouldn't have terminated.

Oh you poor thing.. ah well I suppose it is genetic

Riven, I sort of see things from both sides. I had scans and neuchal fold and although DH and I had discussed what we would do if Downs came up (I was 36 and nearly 41 with my DSs) we hadn't really discussed any other SNs. For me it was more being prepared and knowing what to expect. In all honestly I do not know if/how I would have coped and I suppose some people just don't think they are strong enough. Sad really. Especially as I know two people in particular who both desperately wanted children and would have been happy to have a baby no mattter what.

I suppose we are all different and don't really know what we are capablle of until tested.

BR