Interesting article

[needmorecoffee]

here

Oh i have met Lisa Bridle and have heard her speak. She has a lad with down syndrome. She lives here in Brisbane.

Okay - not I will read the rest. That is a very interesting article.

very interesting lady Lisa Bridle.

Feel for the mother - seems to confirm my thought that women at times get on this conveyor belt of testing and don't know how to say stop!

When I was pregnant with DS I had to sign a form saying that I had refused the chromosome marker test...
I also read this article. I think I agree with Eidsvold - women aren't given enough advice about what these tests actually MEAN, and then aren't given counselling about a negative test result. So hard for her because it was her first! At least she has had the courage to come out now saying how it has affected her.

sat here bawling over that site now.

This is always such a difficult subject for me, not least because there is such a 'push' to find a genetic cause for autism that would mean that pregnancies could be identified and terminated so we're not born. "Even one autistic person is too many" - a quote from a contributor on one of the big charity websites for autism recently.

Society has such a weird view of disability:

If it's before birth, it's ok to terminate.
If it happens after birth, it's not ok to terminate as that would be murder.
If it's before birth, the baby has no rights.
If it's after birth, they have (in theory) loads of rights for no-one to discriminate against them in any way whatsoever.

I don't understand it. Perhaps I can't.

For me, each person is as valuable as the next, no matter what the disability...yet of course some disabilities bring endless exhaustion to the families concerned, and society is rarely kind and helpful and supportive. I guess I can understand why a parent would feel they had to make that choice. It's still hard for those with disabilities who know that some people's attitude in society generally is so often, "We wish you weren't here".

I think it's so hard to judge with things like this. I like to think I wouldn't have terminated my pregnancy if I'd found out that J had any type of disability at all, and I certainly know that I wouldn't have terminated if I'd known that he'd have quite severe autism. But I don't think I can say that I'd have definitely kept him if he'd had something much more severe, not because I don't believe that disabled people are worth less than non-disabled ones, but because I was very young when I had J and I don't think I'd have thought that I'd be able to cope. Maybe it'd be different now, but I don't know.

A baby deserves to be born to someone who can cope with them, and if a 14 year old gives birth to a severely disabled baby, is that 14 year old going to cope? Is the woman with 5 other kids going to cope? Can anyone say that they SHOULD and make that decision for them? I don't think so.

Also, there's the point about quality of life. Some babies are born into a world of pain and I can see why their parents would terminate to spare them that.

I have no similar type of sympathy for someone who terminates for something cosmetic - I've heard of terminations of babies with harelips, which makes me sad - but I can feel some sympathy for parents who make the decision that they want to spare their child a pain-filled life.

I can't buy into the idea that nobody should ever terminate their baby, even though I don't think that I ever could. People have got to make the decision that's best for them, their lives and their families, and I don't think that makes them a bad person.

I read the website too and it was great that it was written from the perspective of the little boy.

However, the baby's parents did not have a severly disabled older sibling to look after, which would be one of the reasons why I would terminate such a pg.

I wouldnt have had the termination but for selfish reasons- if th4re was any chance that I could hold my baby, even for 2 minutes as it died, I would want that.

However the flip side is that I probably would bring a life into the world that was spent in extreme and short livd pain; how is that kind?

I think termination for disability does have a place, and it probably is conditions like Pataus and Edwards even though I might not make the choice. Termination for Downs Syndrome, small defects (a friend was heavily pressured into terminating a baby with what turned out after she refused to be a webbed finger and an imminently solvable kidney problem). That I dont understand.

There will always be some people who want kids that fit into some fairytale description (poor sods are up for a lot of disillusionment!)- my sister was one, quite happy to tell me how she nearly terminated my nephew after a mioderately high downs risk just after ds1's asd dx- but there's no guarantees and people need to know this! her son? fine now but spent 4 weeks in NICU so bloody lucky imo

Oh and I didnt have any tests bar scans with ds4 (scans needed to check for things that might kill in a home birth but might be solved / controlled in a hospital as well as presentation and placenta lie again due to HB)

With ds1 I ahd everything offered even though dh and I had already said a no to termination; ditto ds2 (though no 12 week scan available there); ds3 had very high bloods risk, ran away from the bullied-into amnio- ds3 doesnt have DS, does have asd. which rather outlines the pontlessness of the test doesnt it? So glad I didnt even risk his life wit an amnio.

Manny- I don't think the trisomy 13 was picked up antenatally in the case of the website anyway so his parents never had to make a choice. I was just moved with the way they treated his life and how they celebrated him.

I agree that it is easier and more 'real' to grieve for a person that existed. I don't think that it is selfish to want to meet that person of you possibly can.
Even after struggling to make a decision like the author, I don't think there is anywhere near the same level of sympathy and support following a termination. There is a 'it was for the best (so bloody get over it)' idea. Grieving for a life, however short, seems to be more acceptable than grieving for a life that never was.
That can't be right.