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?

And there are lots of families that have to give up what they considered normal forever when they don't want to. Their jobs for example, holidays, sleep, not just a night out but any time at all alone.

Some people don't want/ couldn't cope with this.

who are these families you talk about and know so much about? how do you know so much about them?

Have a look under Special Needs on this site and you will see a mix of positive stories, complaints about other people or insitituions or systems, desperation, sadness etc etc.

It amazes me that so many people want to gloss over the difficulties faced by parents with children who have disabilities when elsewhere on this site and in RL those same or other parents are talking about their hardships and conflicts andexpressing their sadness and problems and often fighting to be taken seriously etc AS WELL as the good bits.

fivecandles, I post on the special needs forum and deeply resent any posts on there being used as evidence to support your argument.

Look under behaviou/ development for posts about parents struggling with NT children!

Who is saying life is perfect, yes it is difficult sometimes but to be honest it's ususally made more difficult by other people!

but there will always be siblings that will resent each other. Many older siblings resent a new baby, in fact it's more common for siblings to not get on than for them to have a close bond. So it could be argued that having more than one child is selfish because of the impact on that child?

I don't see why people should talk about the negatives on an open discussion like this. There are good and bad things about having any child, but the difference with having a severely disabled child is that (as far as I can see) most of the bad comes not from the child, but from the lack of support.

parents of children with disabilities have to fight for everything. For specialist appointments/adaptive equipment/for their child to be allowed to go to mainstream/special school, for the adequate support if the child is in mainstream and again that involves an endless battle with authorities/school/other professionals.

It should be equal.

Imagine if we had to request everything from birth. Imagine if we had to request that our nt babies be weighed, that they then be allowed to go to toddler groups (iirc sn toddler groups are in short supply but there seems to be a "normal" toddler group around every other corner) imagine if your child had to go on a waiting list for that group, and then had to go on a waiting list to go to preschool, and then once you got into school they were essentially given the books and you had to keep going to see the teacher to ensure that adequate time was spent with your child. And on and on and on. Don't you think that as the parent of an nt child, you would get just a bit fed up with that?

'And there are lots of families that have to give up what they considered normal forever when they don't want to. Their jobs for example, holidays, sleep, not just a night out but any time at all alone.'

Some people don't want/ couldn't cope with this.

You have to do at least some, if not all in some cases, of that when you have kids at all in order to be a responsible parent or to keep everyone fed and sheltered.

Don't want to, can't cope with that, don't have kids!

Why spend 2-3 days on a thread like a broken record 3 CDs long what can be summed up with a simple: If you want an easy life, don't have kids!

But evidence of the blindingly bloody obvious. As you say and I've been saying parenting at all is not a bed or roses. It's wrong to suggest otherwise.

The 'argument' that I'm using the Special Needs section to support is that it's tough to be a parent and often (but not always) tougher to be a parent of a disabled child. In what way is that controversial?

My life isn't remotely normal with ds1. Doesn't mean I think life without him would be better. Hmm lets see swap a foreign holiday (we can't go on planes with ds1) for a him, gosh that's a hard one.....

As I think -as some people have reminded me on this thread- he almost certainly saved me from myself.

I think someone still isn't 'getting' that the difficulties surrounding going out, work, accessing support are entirely separate from the child. I don't sit at home and think 'ooh if on;y I didn't have ds1 I could work until 5pm rather than having to come home at 3.30" I think "oh if only social services wasn't a pile of shite I could come home at 5pm rather than 3.30'.

Now whilst it may factor into a decision of whether to terminate (for someone who doesn't see a fetus as a full blown baby) I rather take objection to the idea that my life must be terrible and awful because the practicalities of going out with ds1 are so difficult. Really they don't feature.

One advantage of taking him to A&E- we never queue......

I think its one of those things that people don't get. Like nappies. I find conventional families throw thier hand up in horror at the idea of a 12 year old in nappies. Yet ask any family of a 12 year old in nappies and you find it barely registers as a 'problem'.

Fio. Don't get where I'm being deliberately obtuse.

Don't understand why you feel the need to 'defend' your own child and family either nobody's attacking them.

Never said that I found the sn board depressing - what I'm saying is it's fairly clear that it's not always joyful and enriching to be a parent of a disabled child. By looking on that and on other thread you might get a tiny, tiny insight into the sorts of struggles that some individual parents go through just to get the right sort of wheelchair for example.

"The 'argument' that I'm using the Special Needs section to support is that it's tough to be a parent and often (but not always) tougher to be a parent of
a disabled child. In what way is that controversial?". 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.

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.

Fio - that section is a mixture of the good and the bad. Life is a mixture.

I've said before that to paint life as parent (of a child who is disabled) as either all doom and gloom or all hearts and flowers is wrong and unhelpful.

like i said, i know plenty of people who thought their lives had gone back to 'normal' and had their lives turned upside down by their adult children - drugs, accidents, there are plenty of folks bringing up their grandchildren.

wannabe...of course, my sister may well have used it all as an excuse and would have been the way she was anyway....there is a chance...but she does seem to hold very deep resentment...and tbh, our family did not have to deal with much compared to others...yes, I needed surgeries, and whatever, but personally, I can't see how it would effect her so much....like I said, it was in the time before parents were allowed to stay in Hospital with their Kids...as a Baby I was for 3 month in Hospital and my mum was only able to visit me once in that time (and even that was kinda pointless, as parents weren't allowed to hold their child, but had to look at them from behind a window) at the later appointments I was, again, only visited rarely, again due to the distance....maybe once a week....once a different Hospital was doing the surgeries, and that was nearer, I was put under that Hospital, and my mum was able to visit me daily, but by that time I was around 10 and my sister is 4 years older, so, can't have been to effected by that.
So, at her...but she is a bit silly and a bit odd and felt always sorry for herself for things that were just unchangable...like us living on benefits at the time, or friends parents having a car and getting lifts, etc...so, yeah, wannabe in case of my sister it is very ppossible she would have been anyhow....hohum....however, my friend is very different from her....and he still felt like that

and indeed, the whole system does stink in the way people with a disabled/sn child have to fight for everything....it should NOT be like that at all

oh p-lease don't start interpreting our posts for us fgs.

I think what you totally fail to even recognise is the utter wonderfulness that can come from surrounding yourself with disabilities. I went to a beach full of learning disabled kids on Saturday- and the atmosphere was 100X more pleasant and funny and hilarious than anything I've experienced in mainstream events. Likewise my son's SLD/PMLD school has a very special atmosphere. In boht those places it was/is noticeable that one of the reasons their such good fun and leave you feeling so happy is because people spend a lot of time laughing. It's something I've pondered before.

anyone feel like they're pushing a repeat button here?

anyone feel like, 'Damn, and i thought my SN child was the one with comprehension problems?'

i have to say, i've found this thread enlightening, just not in the way i think intended .

Our lives are perhaps more difficult than if we had had two NT children, but I wouldn't know because I don't have two NT children!

I never imagined that any posting made on the SN board would ever be used on this site as an argument for this type of discussion.

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!

I see this thread is still going then Fwiw my thoughts echo those of the scary Dr Romano on Er - he said 'You want to be a parent? Do your job' Of course what exactly constitutes our job will vary from parent to parent and some parents have to make what seem impossible decisions and face what terrible situations. The steps I see other people making on their journey may be incomprehensible to me. They may make me sad or angry or puzzled or inspire me. I will try not to 'judge' them because until I've walked a mile in their shoes or crocs or wellies I don't know and I can't say what would be 'best'.

but riven, lets say your child had Goldenhar syndrome, forinstance, and would need oxygen, feeding tube and whatever else on paraphernalia...that would make a trip to china quite difficult,...this is obviously an extreme example....
and whilest most young children will probably not be bed bound, some will become bedbound as they grow up.

fairlady I think though that attitudes from siblings can also stem from the parents. for instance, my aunt had polio when she was a young child and spent months in hospital. My mum said she did resent her, not because she was ill, but because my grandparents pandered to her so much because she was ill, iyswim? So if she wanted something, she was given it, and my mum tells of how she'd had a christmas present (some kind of cuddly toy) and because her sister wanted it my mum was told she had to give it to her. I can see why that might cause resentment tbh.

But where a child is simply integrated into a family and everyone is treated as equal, there should be no need for resentment.