Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

The difference is that it's not so much avoiding disability in their babies, but avoiding having babies with disabilities.

'There are lots of parents who have children with disabilitites/ SN who even though they love them wish that they'd been informed and had the option of termination when they were pregnant."

Where?'

Actually lots.

And lots of women who have had terminations because they knew they couldn't cope or didn't want their kids to have to cope with the sorts of disabilities their babies were diagnosed with.

But there are many hundreds of people who wouldn't admit to it and so write about it anonymously for example. And why wouldn't they admit?

Because how incredibly hard would it be to say that you would have terminated your own child if you'd had that knowledge??

Especially when there are people with the sorts of attitudes of some posts here e.g. all children are a gift etc.

And you're especially not going to admit you would/did feel this way in discussion with someone who HAS got a disabled child are you??

It's wonderful that some people feel like this but not everybody does. You have to respect that.

Re this: "So, if you can't cope, its ok to kill the child?"

If you feel that the fetus is a child, then it is understandable that you will not abort under any circumstances.

Others don't. And so it is understandable that they would do all possible tests in the hope of avoiding major disabilities in the child that the fetus develops into.

so, if those who absolutely feel they could not cope with a disabled child were told as soon as your child was born that said child had a severe disabilities, would you get rid of it? Given the option to kill it would no longer be available.

All this "making the right decision for you and your family" is all very well while you have the ability to make that choice, but that ability is so limited. You can terminate the baby with downs/spina bifida/a cleft pallet etc but what about the disabilities you can't see? If you don't know about them would you opt to put your newborn/2/3/4 year old up for adoption once the disability became apparent? After all, if you would be unable to cope with a child with disabilities then this would be the only course of action surely?

Re the original post, being the mother of a 5.5 year old son who is profoundly autistic and a 1 year son who has downs syndrome, I have come to the conclusion that it is societys focus on appearance that makes all the difference.

DS2 wears his disability on his face so to speak, whereas DS1 has no real physical features that indicate his disability or the severity of it.

When DS2 was born, people did not know whether to congratulate or offer me sympathy, it was like it was the end of the world, despite knowing of DS1's condition.

When the fact is that it is very likely that DS2 with live a far more independent and fulfilled life, despite having downs syndrome than DS1 will.

I have all but given up trying to explain this to people, as in my experience the majority just can't seem to seperate physical appearance from severity of disability.

For the record, I declined tests for both my children and will be doing so for all of their future siblings.

Whilst I admit parenting can be hard work, burden is not in my vocabulary when referring to my children - 'beautiful gifts' would be far more appropriate.

I would more worried about carrying a child who was diagnosed with a disease which meant they were in constant and acute pain rather than a child who would need special support or was visually different like DS.

I read a lovely article about Damon Hill and his son a few years ago.

By Reallytired on Mon 15-Sep-08 18:19:45
I think when you have other children that you need to think about their needs. If my son had a disabled sibling his quality of life would be wrecked. Respite care in our area is very limited and you have to really fight for it.

However I don't know what I would do if I faced with making such a dreadful decision. I don't think I could bring myself to terminate a pregnancy.

my ds is 16 and will be happy ro post and tell you what he thinks about having dd as his sister.
his life has not been "wrecked" it has just been his life.

'I'm under absolutely no obligation to respect anyone's 'choice' when they see people like my child as a burden or a cancer or something that's not to be 'coped' with.'

You're misinterpreting what's being said.

There's nobody here who is saying that all disabled etc children are a burden to their families. I wouldn't dream of making a judgement like that.

However you have no right to say that there are not parents who DO feel or would feel like this.

There are lots of parents who do not want to have children with disabilities affecing its quality of life and life expectancy and THEIR feelings have to be respected even if you personally don't feel the same way.

what I am sayin is that you have to respect individual parent's choices as they respect yours.

Those of us that state 'some' would find it difficult and a burden (in my meaning a trouble or difficulty) are not dictating to others that they should or should not have a termination or that the lie of someone with SN is not worth living. We are merely saying that given the option we may make choices that would reduce the risk of one of our children being born with particular SNs.
My friends Mother blames the autism of their 45 year ols DS on the 'early' death of her husband.

"Reallytired once they're here though (which is the case for most people- child first then they find out about the disability) that's not an issue as each child in a family has 'equal' rights. "

It could be argued that at the ante natal stage that they aren't here. That small bundle of cells does not have full human rights, yet alone equal rights.

"I think you have to be very, very careful about making generalisations about your personal experience"

what an odd sentance.
Of course riven will draw on her own expirence. as will I.
or are you saying that we can't allow the fact that we acyually know what it is realy like to have a disabled child, not relevant?

wannabe, currently there are only so many tests available. Depending on the result parents are able to make a decision about whether or not to continue the pregnancy.

Where there are conditions that are not testable or not picked up by tests for whatever reason then parents have other decisions to make.

Some parents DO give their child up for adoption or fostering, some do send their kids to residential schools. Some DON'T cope. Some DO feel their lives have been wrecked and the life of their child esp. where they have to witness their child suffering.

Obviously these are all worst case scenarios (and there are mayn millions of positive stories too) but they DO happen. You can't pretend they don't just because it's not your personal experience.

I have met a few mothers of children with severe disabilities who have suffered enormously (children and parents). Some have admitted in confidence to me (no they wouldn't post on a thread like this or tell a mother who does not feel this way) that they wished they'd had the option of termination.

Not nice, very, very sad but true.

I certainly don't think any the less of them. And I think it's incredibly harsh to judge people like that.

Wouldn't it be good if they did have tests for CP, autism. Atleast you could prepare for that.

Be very, very careful riven. My father is disabled (MS). I work with a large number of disabled students. I know quite a few parents of disabled children.

there are teast for cp already, they are the ones the doctors and nurses take to become qualified. sadly most cases of cp are caused by cock ups at the birth.

back to the OP - I refused to have these tests as I would not have terminated any of my children.

I feel it is the ultimate in discrimination. It is on par with aborting a foetus because it is the wrong sex and should be outlawed.

"Those of us that state 'some' would find it difficult and a burden (in my meaning a trouble or difficulty)"

on reading this thread, I owuld say that those of you who would state as quoted are not listening to those of us that do have disabled children. we have all repeatedly said that our children are not a burden (so, to be clear, no more trouble or difficult than our NT children). we aren't saying this so that we can come across as holier than thou, and fabulous all-round tree hugging mothers. we say it because we find it to be true.

we have also said that we have yet to come across anyone with a disabled child who has said that their child is a burden.

knowing parent of disabled children is a lot different from being one yoursel.