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?

It wasn't any information or prejudice or ignorance which made me opt for ante-natal testing. I have a very good awareness of what the tests were for and of the conditions being tested. And if the tests had been positive how I would have responded to that (which I can't be 100% sure about) would have been made as a result of weighing up facts and figures and analysing my feeligns and carefully carefully considering how I and my family would cope in the present and future and our happiness. I really believe that this is the case for the majority of parents. And to suggest otherwise e.g. that parents don't know their own minds or aren't capable of making their own decisions about their bodies and families is not only patronising but takes us back centuries pre women's liberation etc etc.

"some very real concerns and problems of living with or being the parent of someone with disabilities."

God I LOATHE people looking into our family and saying "oh it must be so hard". (head cocked to one side in concern). I've even had 'so hard parenting a child like that' from a frigging professional.

Actually my disabled child is healthy so my concerns for him tend to be somewhere around the same as the other 2. Ds3 has taken up my share of concern tonight.

I would guess hope from fivecandles posts that she teaches in mainstream. I also think for various reasons that working with EBD kids is a really bad preparation for working with developmental delays. They need very different approaches. I'm not sure one offers much insight into the other. Certainly someone working in ms or with EBD kids is going to have no insight into life with DS1.

I will repeat that I think that everyone has the right to make their own choice.

Back to the OP. I was talking about something similar to someone at work today who has a son with DS. She's not anti-testing or anti-termination or anything, very much pro-choice - but she commented that tests are introduced/new ones developed and people have them without knowing what they're having, no counselling is offered, they're just told 'oh you're high risk of DS' and no wonder people go into a spin. And there's enormous pressure from the docs to go ahead and get all the tests going and then terminate if positive. It's right for some, but the medical profession needs to understand and respect that it is not right for all.

Yes, I did read your post. You said, 'The information available is skewed.'

And I really don't know what 'information' you are referring to. Sorry.

'Having a child with a disability is portrayed in terms of hardship to be endured.'

Who by? Not anyone on here.

'Having a child with a disability is portrayed in terms of hardship to be endured.
That is notthe experience of most SN parent,'

I don't know that it's possible to make generalisations. The parents of children with disabilities that I know or have worked with are like any other parents in that they love their children and find them rewarding and challenging and loveable and difficult etc and then they have to address the particular needs of their children which may present varying degrees of extra challenges etc depending on what their needs are. Like other parents most cope and are happy and some don't.

And then there's the people who choose not to continue with pregnancies when they are told that a child has a particular disability.

And by the way there's an awful lot of lumping together of SN and disabilities (which admittedly I'm also doing but trying not to) which is not particularly helpful.

Many parents have a internal and probably unspoken list of conditions that they feel they could cope with and ones they feel they couldn't. This varies from parent to parent. And may vary again when faced with reality of a diagnosis.

You see I agree with you in a way jimjams - all the scans and tests seem like just a thing to do. I went into both scans with DS1 thinking of it as just an opportunity to see the baby. Now I know better, I'm dreading the OSCAR scan for this baby as I know full well the sort of thing it can reveal.

But having said that.....I think the information is there, the leaflets about all the tests do explain what they're looking for, although not in large amounts of detail. But most people, if they haven't experienced any problems before, or it's their first pregnancy, probably never think it will happen to them, so it doesn't really register.

I remember our midwife at ante natal classes telling us that one in three of us would have a c-section, and me looking round the room thinking 'well it won't be me, naturally'. Ha. How wrong I was.

I can also see that it must get really annoying people telling you how hard it must be all the time. The only thing I would say is that these people are probably only trying to be nice, even if they're not doing a very good job!

jimjams I'm sorry you feel that way. Many parents I know and work do talk about how hard it is. Disability is very often hard for whatever reason. My dad with MS has increasingly limited mobility. He finds this incredibly hard. Don't get all the downplaying TBH.

Yes I work in a mainstream schoool but I have taught and continue to teach kids with wide ranging and sometimes complex disabilities - hearing and visual impairments, brain damage following a car crash, paraplegics, Autism spectrum, ADHD, Tourettes... Worked at a school with a hearing impaired unit, semantic pragmatic disorder..

Rewarding, brilliant, maybe, but often hard. Teaching and parenting.

Am I not allowed to say that?

And then some people are surprised when parents don't feel they'll be able to cope or don't want to admit they're not coping or are ashamed because they don't seem as positive as everyone else ...

If you are working in mainstream - with whatever disability - or with hearing impairments or SPD, don't be mistaken in thinking that you know the first thing about SLD's. Sure talk about your experience, but don't try and imagine that gives you some insight into my son's condition. It doesn't.

'If you are working in mainstream - with whatever disability - or with hearing impairments or SPD, don't be mistaken in thinking that you know the first thing about SLD's.'

I actually think this is incredibly patronising and just wrong. I bloody hope teachers know the first thing about SLDs or they wouldn't be allowed to teach! Wouldn't you be scared if we didn't?

'Sure talk about your experience, but don't try and imagine that gives you some insight into my son's condition. It doesn't.'

I never said I had an insight into your son's condition. How bizarre. I don't even know what your son's condition is. Sheesh!

LittleMyDancing has a good point at people generally wanting to be nice and show concern....tbh...after following discussions on SN and how people feel about x, y and z...I now am terrified to say anything....because, you never know how the other person could receive even the most well meant comment...
I think , because an outsider will possibly only see the obvious that is to see...i.e. if the behaviour is difficult to manage, or a child needs a lot of specialised medical support, etc...then to an outsider this will seem like a very daunting "task"...however, as a parent you will have such a lot of love and emotions for your child, no matter what....so...your perspective will be completely different...
I am doing a very bad job trying to explain what I mean, sorry!

Are you really trying to equate parenting with teaching? Purlease.

I don't know what sorts of conversations you think I have with friends with kids with disabilities. Do you imagine that we ring each other up and say 'ooh fluffy clouds outside today'. Or course not. We talk about the realities of it and often that involves a lot of sarcasm, or black humour or moaning. That doesn't mean that our life is terrible, or we are to be pitied.

I'm sorry I don't think you get it at all.

Anyway. Shutting down thread as have to work again.

So will repeat. People are free to make their own choices. Just don't drag my son into it, or assume that you have the remotest idea what parenting him is like. Leave him out of it and you can do what you like without any sort of opinion from me.

I would not be remotely happy if a teacher was brought in from mainstream to teach my son's SLD class.

Don't think I claimed to be an expert did I but I would hope that I would know the 'first thing'?

Not really getting the whole 'How dare you pretend to know anything about disabilities unless you are a parent of a child with one' attitude.

Do you know think it's quite a good thing to raise awareness about disabiliites and inform people about the good, the bad and the indifferent.

I've seen mainstream teacher trying to teach my son. Dear god. I'll never allow them anywhere near him again. Actually they had no training and admitted as such.

'Are you really trying to equate parenting with teaching?'

No jimjams. No. I'm saying that working with students with disabilities (obviously depending what they are) poses particular challenges to teachers.

Not saying it's anything like the same as parenting them. Definitely not what I signed up for!!

I'm just not getting the downplaying of the difficulties for either. Don't see how that helps anyone TBH. Parents, potential parents, the general public, anyone..

Acknowledging difficulties isn't underminign the positive aspects of having a child, any child is it?

but fivecandles the reality is that you can't inform yourself with a book, or a visit to a website. You can only really know what it's like if you have actual experience of being a parent of a child, because we just don't think the same about other peoples' children. It's the same as saying, "I know all about babies because I've read the books and babysat for my friends" once you give birth the reality is far different to the perception.

And what you think you know today might not be what is real tomorrow.

When I was growing up people with visual impairments didn't amount to much when they left school. Most went on to become telephonists and piano tuners, and the occasional one went on to become a physio therapist and everyone commented on "how marvelous" it was.

But that wasn't because blind people were incapable of doing other things, it was because society didn't think they were capable so it just never happened. So based on that my mum didn't want to bring another child into the world who, in her opinion, might not have a decent quality of life. How wrong she was.

Out of me and my sister (who is sighted), I am by far the most independent. There is nothing I cannot do apart from drive a car obviously. (well I know how to drive one, it's just that no-one will let me ).

So one day I asked my mum, if she'd known then what she knew now, would she have done things differently wrt the termination, and she said she probably would have. And yet I know she doesn't regret the decision she made, but with hindsight she probably would have decided differently.

'I don't know what sorts of conversations you think I have with friends with kids with disabilities. Do you imagine that we ring each other up and say 'ooh fluffy clouds outside today'.'

No. But there's quite a lot of that going on here. On this thread I mean.

I.e. anyone who chooses to terminate does so because they have misplaced 'fears' or 'issues' because parenting a child with disabilities is always a joy and perfectly possible.

Clearly not everybody feels like that including parents with kids with disabilities themselves and yet people's concerns about potential children's quality of life and their own and hardship etc etc is being trivialised.

'I'm sorry I don't think you get it at all.'

What is 'it'? What am I not getting? TBH I thought I was just expressing my views or am I not allowed to do this because I haven't got a disabled child?

'Just don't drag my son into it, or assume that you have the remotest idea what parenting him is like. Leave him out of it'

Sorry but this is really bizarre. Please tell me where I have mentioned your son?

It is just not true that everyone who would terminate a pregnancy for disability/SN
doesn't know what disability is like (some parents of children with testable disorders do terminate subsequent pregnancies where the child has the same disorder) and it certainly doesn't mean they don't love their existing children or wouldn't love their child if they became disabled. I think these are massive leaps.
Personally I do think it is harder parenting a child with even mild SN! The worry, the lack of suitable childcare, all sorts of issues make it hard, and the child themselves can be more difficult. Doesn't mean you don't love them.

It is just not true that everyone who would terminate a pregnancy for disability/SN
doesn't know what disability is like (some parents of children with testable disorders do terminate subsequent pregnancies where the child has the same disorder) and it certainly doesn't mean they don't love their existing children or wouldn't love their child if they became disabled. I think these are massive leaps.
Personally I do think it is harder parenting a child with even mild SN! The worry, the lack of suitable childcare, all sorts of issues make it hard, and the child themselves can be more difficult. Doesn't mean you don't love them.

It is just not true that everyone who would terminate a pregnancy for disability/SN
doesn't know what disability is like (some parents of children with testable disorders do terminate subsequent pregnancies where the child has the same disorder) and it certainly doesn't mean they don't love their existing children or wouldn't love their child if they became disabled. I think these are massive leaps.
Personally I do think it is harder parenting a child with even mild SN! The worry, the lack of suitable childcare, all sorts of issues make it hard, and the child themselves can be more difficult. Doesn't mean you don't love them.

I just thought of a line from Extreme Makeover. Someone asked a blind kid what it was like to be blind, the answer was "what is it like to see?"

I know I know wannabe. We can never fully know how we'll feel or how life will be until we experience it.

But in RL you HAVE to make choices based on what you know about yourself and weighing up all the information you have access to. You can't wait until you've experienced something before deciding whether it's right for you all the time.

We all have to make huge,life changing decisions based on what we think will make us happy. What to study or what job to do, what house to live in, what part of the country to move to, who to marry if anyone, whether to have kids.

I don't think you can dismiss someone who opts for a termination because they don't think they can cope with whatever condition the foetus has been diagnosed with because they haven't yet experienced that child any more than you can dismiss the woman who says she wants to go on the pill or she wants to work as a doctor or whatever. People have to be trusted to make their own choices about their bodies and families. Sometimes they'll get it wrong and regret the choices they make but better than not having choices at all.

jimjams, honestly I'm not talking about your son. I'm not talking about special education. Honestly I'm not.

Maybe I am saying the unspeakable here but ultimately, not everyone would want to have a child who has been dianosed as having a severe disability before birth. Some people can deal with it, some can't. It's as simple as that.

Just because the tests are available, is not bad in itself. The test results may give a parent-to-be time to adapt mentally to the disability before the birth. Why is that a bad thing? And if this same information means that a parent-to-be can be offered a legal termination based on the test results, then that is their perogative, as the law stands. It is a personal decision and is up to the parents involved.

Ultimately it down to the family it affects, so those who choose not to go ahead shouldn't be judged any more than those who choose to go ahead with a pregnancy knowing in advance of a serious disability. Judgement can go both ways.

But fivecandles, no-one said that parenting a child with sn is a constant joy etc. what people said is that parenting a child with sn is no less of a joy than parenting a child without sn, because the parents of children with sn feel the same about them as their nt children. fgs it's not rocket science is it?

Of course it's hard. but I imagine parenting a drug addict or a juvanile delinquant is just as hard. And yet if there was a test to determine if children were going to become drug addicts or teenage mothers (at 13) or delinquants as soon as they hit secondary school I don't think parents would be so quick to terminate as if the results came back that the baby had downs.

Agree mabanana.