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?

with us it was actually on the plane. I have no need to be marked down as disabled but the air steward was obviously ve observant and must just have seen me holding on to dh and the manager came over and explained that apparently all passengers have to be able to get down stairs independently (I could but guess it might be harder for me to find exactly where I wa going etc although obv dh would help if necessary). She was ve nice about it though. We had the seats reallocated when we flew back to avoid having to change seats again.

Sounds like a pita for you though.

oh, i see their point, re: getting down the stairs, i suppose, but then surely they should not have let us book children into the upper deck at all? (dd2 certainly couldn't have managed the stairs at 10 months old )

I wouldn't have minded the reallocation, but they kept just moving dd1, on her own...

and by the time thay had admitted that they couldn't override, then there weren't any 2 seats together on the main deck, and so dd1 would have been sat on her own all the way (mind you, i think whoever would have been sat next to her would have swapped sharpish )

Just wanted to pop back into the thread to say a couple of things:

firstly, this thread has become very repetitive (as someone said earlier, I think it was expat?) so I'm not going to keep joining in

also, sorry for hijacking slightly earlier to talk about our experience. I intended to write a short post about the way in which people might make the choice to terminate, and out popped our whole story which had nothing to do with Down's Syndrome So sorry about that.

and lastly - hello NorthernLurker! Haven't seen you for ages, job going well I take it?

thanks all - as always, enlightening, interesting and frustrating in equal measure

May I just point out that on my list of reasons for not going through a pregnancy due to SN or otherwise my trips to China would not be a major consideration. I guess for many it was a little too easy to pick hat out in a post and choose to misinterpret. It was just to make the point that it would alter my life should, let's say, one of my childrn be run over and end up in a wheelchair or have special needs. Admittedly I don't know many people who would turn away a child once thay are born but many many of my friends have had terminations, including one as her child had spina bifida. Of course most people would do anythign to accomodate their children, adapt a house, move and change their lives completely and so would I just not for one I'd never met. My children are 6,5 and 2 and so the prospect that a baby would arrive in 6 weeks time with needs above and beyond the norm would be horrifying. I find it hard enough to listen to the older ones read and do homework every night let alone if I faced constant monitoring of another child for the next five years or more, it would be deeply unfair on the children I already have.
I have three (nearly four) very 'wanted' children and still felt no over whelming connection with them inside me, can't say how I would feel if I miscarried late in pregnancy as it's never happened. I have never really greived for anyone (although as yet only GPs and an Uncle have passed), it's not in my make up and I'm a little too matter of fact.

riven, your daughter is, indeed, gorgeous!
I think, though, if we have to cope we somehow do...however if there is a choice, then it is different....not sure if that makes sense at all!

Silverfrog, that is unbelievably crap

Silverfrog, Are you saying you booked first class and were moved without being informed??..... Whe I flew with my DH and children, we were moved when they sat my DH accross and aisle and that was in business class. Override the system? In my experience if the seats are taken they can't take them away from people but that has little to do with the system.

yes, twelvelegs - moved without informing us.

we were booked in club world, not first (not worth the money ime ), and pre-booked our seats on top deck, all fine - booked early so that we could all sit together - as you said earlier, much easier if we can all travel together.

we then booked dd1 as a disabled passenger, so that we could get extra help. all fine, no-one queried anyhting with us.

10 days before we were due to fly, I (being totally anal about most things) checked yet again that all was well. It wasn't. They had moved dd1 downstairs on her own, as described in an earlier post.

And then the merry-go-round began.

She couldn't be moved back upstairs without removing the disabled tag. when that was done, she couldn't be moved back to where she had been as they had moved all of us away from bulkhead seats (as they had moved our child - but had, obviously booked bulkhead for dd2, not dd1) and someone else had been booked into there in our place.

when all that was clear, we couldn't be moved alondside her as seats were booked there too. It was really farcical, and BA really were suggesting that it was ok for an autistic 3 year old to sit alone on a transatlantic flight.

so much for equal treatment for disabled passengers...

'And the reason why it is generally tougher to be a parent to a child with special needs is because children with sn are not considered equal to their nt peers. It is tougher because in order to parent a child with disabilities and help that child reach his/her full potential parents have to fight a system which doesn't care.'

Well maybe that's true in some cases. Maybe even the majority cases but whether the problems are with the 'system', the lack of support, other people's attitudes they are still problems. You still have to deal with them. It's still tough.

And as I've said that before this is to gloss over the very real suffering and practical difficulties that disabled people and their parents face.

My dad has never experienced prejudice actually but he can not walk up stairs. That's not a problem with attitude actually.

There is a student at my college who cannot see. That means to state the obvious that she cannot deal with any text that is not brailled which since she is doing English Language at A Level presents all kinds of problems. That's not really a problem to do with attitude is it? Another student cannot breathe without a respiratory machine which has to be cleared out regularly by a trained nurse who waits outside the classroom. How is this anything to do with perception?

'It's tougher because some of these children end up in classrooms being taught by people like you (who are supposed to have those children's best interests at heart) who have the attitude that such children are a burden and such a child would destroy your oh so normal life.'

That's just crass and offensive and beneath you TBH. I have never said anything about children being a burden. NEVER, NEVER, NEVER. I do wonder why you want to be so unpleasnant and actually make things up.

There is a big difference between seeing real people as a burden and worthless or whatever else you are IMAGINING that I think without actually listening to what I AM saying and acknowledging that people with disabilities sometimes have particular needs that makes their lives and their parents tough. Which is so incredibly and mindblowingly obvious and is actually what 100s of posters say about themselves and thier own children on this thread and others and in RL that I can't really understand why you would argue with it.

I love my job and I'm good at it. I value all my students equally and spend vast amounts of time over and above the call of duty (as most teachers do) to accommodate all their needs. How dare you insult me and make assumptions about what my TEACHING is like and how I view other people. Especially when my father is disabled and I work with and know many, many disabled people.

Silver, I always find having a quiet tantrum and threatening not to leave the check in desk unti it's sorted or threatening to raise your voice usually sorts out any airline issues!! (Including the time 'they' forgot to give all of our passports back and I ranted for fifteen minutes then checked in my handbag where it was all along they still apologised)

'It also slightly amuses me that you are telling people to look there who post there all the time. Like we don't really know what it's all about!'

Then perhaps you'll forgive me for finding it a bit odd that people sound off about all kinds of things on that section and in RL - their feelings of guilt and anguish about their kids' conditions, their practical difficulties, their problems with attiutdes and systems, depression, sleeplessness, lack of support (in and amongst the positive stories) etc

and then miraculously when they come on this thread all those issues have vanished. Instead being the parent of a disabled child or even being disabled is joyful and enriching. The only problems are with other people's perceptions and really it's no different from any parenting any other child or being not disabled which is itself joyful and easy.

Well how lucky you are to feel so positive and joyful. Perhaps you should tell the disabled people I know and their parents and all the people posting on the other section that they should pull themselves together, stop complaining and follow your example.

marvelling at the twists and turns of this thread.

Dd2 has DS and hasn't cramped my style any more than my other two have. I have flown on my own with three children under 6 (so that'd be a 5 year old, a toddler with DS and a baby), plenty of times.

A toddler with DS is hardly either a severely disabled or SN child.

oh, we got it sorted, don't worry. both dh and I do a good line in not budging, and ever more so when it concerns one of the dds.

The irony is, we had only pre-booked all of this so that we spent minimal time at check-in as dd1 is not the best at waiting around, and so we were dealing with the customer relations call centre for most of it, and they really seemed to have no idea as to how to resolve the issue

i wouldn't go to china if you paid me.

well, depends on how much.

wasn't this whole thread about children with DS? Of course she's a child with SN.

She's now a big girl of 7 and a very pleasant travelling companion regardless of the fact that she can't read much and can only count to 10.

fivecandles, you bleat on a lot about being misrepresented, and then go and do it yourself.

Most (all?) of the parents osting here who have disabled children have pointed out that we hate the whole gift/enriching patronising crap.

I did consider myself lucky to have dd1, but that was following an early termination for medical reasons and issues with fertility. dd2 was as much of a pleasant surprise.

but we have all consistently said that we, in our experiences, find it as challenging as parenting our other children. Sometimes in differnt ways, but each child brings it's own set of worries and cares.

Hmm, China, interesting choice for parents of disabled children given its record on disability and human rights in general. Probably wouldn't be first on my list. In fact, my sister was refused a visa on the grounds that she put Editor for her career on her application and was therefore considered dangerous.

Here's some info, if you're interested:

'The traditional Chinese term for disability is "canfei," meaning "handicap" and "useless," or "canji," meaning "handicap" and "illness." This demonstrates how the Chinese used to view disability. The term "canji ren," meaning "handicapped" and "sick people," is also common. The term "gong neng zhang ai zhe," meaning "individuals with disabilities" is rarely used.

In many areas of China disability is viewed as a punishment for the disabled person's parental or past?life sins. When encountering health problems, many religious people, especially those from rural areas where medical resources are not readily available or sufficient will visit temples or Taoist priest houses to pray, worship or perform rituals in order to find out the cause of and/or the solutions to their diseases or disabilities.

Mental health is believed to be achieved through self?discipline, exercise of power and the avoidance of morbid thoughts. Emotional problems are understood to be associated with weak character. (Lee, 1996).'

cirrie.buffalo.edu/monographs/china.html

'I don't fly for environmental reasons. Bloody climate, stopping me travelling moan whinge etc
Oh look, my life hasn't ended! '

You see this is what I mean about trivialising difficulties and making light of what's important to other people.

Travel may not be important to YOU riven but it may be very important to other people especially if travel is the only way you might keep in contact with close family members and 12 was giving one example, one of the millions she could have chosen.

I have given others: keeping my job, sleeping at night, not agonising about what would happen to my children after my death. These are things I value hugely, some more than others.

No, not all of these would be affected by every disability but some of them might well be.

Please don't impose your values and feelings on other people. Respect the fact that people are different, have different values and priorities. and make different choices.

I, too, have missed the point of your last post fivecandles.

If we were to simply go by human rights records of various countries, then perhaps I shouldn't have let dd1 be born in africa...

and thanks for the info on China - can't say it added much to my own knowledge, though.

'Please don't impose your values and feelings on other people. Respect the fact that people are different, have different values and priorities. and make different choices.'

You might try the same.

Just a suggestion.