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?

2shoes I have hardly been asking or expecting people to 'drone on' about the difficulties of bringing up a disabled child as you put it unless they want to.

What I am saying is that is wrong to gloss over the difficulties and suggest that they are all about perception or prejudice when that is quite clearly not the case (for many).

It's about balance isn't. You don't like the fact that some people seem to think having a disabled child is all doom and gloom and rightly so and I don't like the fact that other people are painting it as an entirely joyful and enriching experience. In fact, I think that's amazingly patronising and disrespectful to parents with or without disabled children. I don't see parenting full stop as enriching and joyful a lot of the time (although I love my kids fiercely). I am sure that I would feel even less joyful about it if I was having to deal with the sorts of practical and psychological difficulties that people on this thread and others and people I know have to deal with.

Jimjams I agree with you about lumping all disabilities in together - not helpful and quite dangerous. I?ve been saying that you have to deal with each child?s disability as a separate thing. As I understand it roughly half of people with DS have a heart defect which can sometimes be very serious. I get the impression that some people think DS just involves differences in appearance and learning difficulties ...

Erm, what assumptions have I made about you Fio?

No, I am not saying that your experience and happiness is unique. I haven't ever questioned that a disabled child can be joyful and rewarding and all of those other things. I am saying that is only part of the picture (which may involve all kinds of practical and emotional difficulties that can't be trivialised) and you can hardly speak for everyone as I can't either.

People with and without disabled children are repeating that there is not enough information given to women about antenatal testing and about disability and I absolutely agree. The problems and difficulties are part of that information surely?

I don't think that it would be especially helpful for me to tell someone considering having a child or who had made up their mind not to have a child that parenting at all is joyful and enriching, won't limit their lives at all and any concerns they have about birth, lifestyle, childcare, anything are actually just in their heads or a question of perception.

I would imagine that most people would find that patronising at best and insulting at worst. And if you were a parent of any child who was not feeling particularly joyful and actually really did value sleep or had a phobia about birth or whatever it really wouldn't make you feel too good at all. And that attitude might prevent you from speaking out and saying actually there are times when I'm really miserable ...

'The majority of people who HAVE disabled children get on with their lives as NORMAL, some with more outside help than others. '

Well actually it totally depends on the family and the child and the disability and what is normal.

I'm sure lots of people do get on with their lives but many don't and can't.

And if you look at what some people have said on this thread and others about their battle with depression, sleepless nights, battle with the system, inability to get respite care, heartbreak about hospital visits and operations, getting funding for particular sorts of wheelchairs and equipment etc etc you just cannot be so glib about it.

do you take these open and honest and enlightened views into your classroom to teach them to your severely disabled students?

And do parents actually come to you and tell you that they'd wished they'd terminated their child, or do you perhaps suggest it to them when they're having a bad day?

'Well caring for anyone will involve all kinds of practical and emotional difficulties that can't be trivialised too'

Quite.

'I think the problem is the information given to people pre natally is all negative and not an ounce of positive in it (not that I have seen)'

Maybe you're right about this. Part of the problem is that doctors' job is just to give facts and that can seem very cold.

TBH if doctors routinely said, 'Well you're going to have a baby with severe disabilities but don't worry she will bring a huge amount of joy to your life and you'll love her hugely.' then there'd be a lot more complaints than there are currently.

That said, doctors are notoriously bad at communicating. Maybe getting better?

but what is normal? Because surely if it's the way you normally live then that becomes normal for you. And what is normal today can change tomorrow and become your new normal.

Just like pre dc we could all lie in bed until midday on a sunday and go to the pub every night and go out when we wanted, and that was normal. then we had babies and suddenly life becomes consumed with nappies and feeding and you can't just go out on a wim, then that becomes your normal.

'do you take these open and honest and enlightened views into your classroom to teach them to your severely disabled students?

And do parents actually come to you and tell you that they'd wished they'd terminated their child, or do you perhaps suggest it to them when they're having a bad day?'

I think that's pretty crass wannabe.

What views are you talking about that are 'honest and enlightened' (and I presume you mean those ironically)?

Well strangely I don't have much call to discuss disability and termination with my students being an English teacher.

And people I know well have spoken honestly and openly about their feelings about having a disabled child. The person I have most in mind had a child who is roughly my age long before antenatal testing and scans.

Parents dealing with these very difficult and personal issues often feel ashamed that they're not able to just continue with their 'normal' lives joyfully. Strangely, they probably don't often voice these opinions on threads like this (although some have very bravely said why they DID choose termiantions or would) and probably wouldn't say these things to people busy being joyful and positive with their own disabled children unless they were slighyl bonkers as well as mindblowingly insensitive.

but it's possible for there to be middle ground. They don't have to say that it's all negative because it clearly isn't.

Instead of giving information maybe they should be giving out contact details for the DSA and similar organizations who have actual experience with downs and other disabilities, from a practical pov rather than from a textbook one.

my family is normal we do *normal things, my dd is just part of that family.
why do I need to post about the crap stuf? why is it patronising if I want to say my dd is beautiful, I am not lying?
It is not for you to dictate what people say on this thread, or who stays or leaves.

my dd is a lovely girl who lights up my life.
that is a fact, it is not hearsay that i have stolen from someone elses life.

weirdly out of all the familys I have met and become freinds with only on has had negative stuff happen with a sibling because of a member having sn.
the sibling ended up having counseling, the father could not get his head round it at all.
but the childs ddisability was cause by a terrible accident when he was a tot and was witnessed by the sibling.
you can't test for that.

wannaBe that just comes back to what is right for you. How you balance your needs and your potential child's needs if faced with that situation and it will vary from person to person.

There are some parts of what is my 'NORMAL' life which I would find it very difficult to give up and which would make me think very carefully about having a child which would jeopardise that.

The attention I am able to give my current kids, my work which I love and value as part of my identity, my marriage etc etc.

I think I would find it unbearably distressing to give birth to a child who was in pain. I wouldn't be able to continue with my 'normality' in those circumstances.

Some people give the impression that some disabilities just present a minor inconvenience and I'm sure that's true in some cases but there are lots where it completely changes a family's life which has to almost entirely revolve around the needs of one child.

Fivecandles, I just thought I'd further lend my support to all of your posts. I completely agree with you. I know if my next child was severely disabled it would completely alter my life for the worse. My summers are spent in China, not a place for a wheelchair, long haul flights at least twice a year and another European holiday. This is part of my life at present and a severly SN child would take this away from us. Obviously should something dreadful happen, although unlikely considering I will have a planned section (arguably the safest method of delivery fro baby), and/or baby is born with disablitities otherwise undetectable then I will have to deal with those and find the positives.

, I think twelvelegs has made a very valid point...some siblings will resent a sibling that has somehting wrong with them....my sister resented me, the time my mum spend with me when I was in Hospital (erm, this was before parents are allowed to stay in Hospital with tehir Kids...so, not sure what she was on about) and all that...
now, I thought maybe it was just her, but talking to a friend of mine about it, he also mentioned that he felt some resentment towards his sibling, who had cystic fibrosis.....so, doesn't seem that unusual.
To those that were/are siblings of someone with an illness/disability, etc...and that did not feel any resentment...your siblings are so lucky to have you and your support!

I agree with you Wannable. I suppose there are ethical issues with what sort of information can be given?? If it's not entirely objective and factual then you could get someone threatening to sue because they'd been told having a disabled child was going to be wonderful and it isn't??

'my family is normal we do *normal things, my dd is just part of that family.
why do I need to post about the crap stuf? why is it patronising if I want to say my dd is beautiful, I am not lying?'

You don't HAVE to post anything. I'm glad you have a normal life.

Some people don't. As I've been trying to say it's not all about YOU and your experiences or me and my experiences. Of course they matter and count but you can't draw conclusions from them.

If you are in a position of considering antenatal testing or termination then you need to have access to all sorts of information and then make a decision which feels right for you. End of.

'then we had babies and suddenly life becomes consumed with nappies and feeding and you can't just go out on a wim, then that becomes your normal.'

Well, yes. When I became a parent I accepted all these things for a relatively brief period of time but I wouldn't want that to become 'my normal' for the rest of my life (if I was going to have a child with a disability that necessitated that).

oh someone ask about where I would draw the line and think termination would be the only option...I honestly could NOT answer that....someone else mentioned Edwards Syndrome....and even in that case, I could not say for sure...I just couldn't...I think it's an almost impossible to really say....because I may well, in that case think, that I would feel "better" carrying to term and let nature take it's course, but I would appreciate to have the time to prepare in advance, iykwim.
I think, one of those things that I am almost sure I would terminate for would be Goldenhar syndrome....but even then...I could NOT say for sure....