To think you don't see many people with Down's syndrome anymore?

[Neonoen]

When I was a school there was a boy with downs syndome in my class. At secondary there was the first boy and then another one too.

I worked with a man with Downs syndrome at my first job (he taught me how to use the photocopier the first day after I wasted a whole reem of paper ). At the same time there was a woman who travelled on the same bus as me with Down syndrome and another who worked in McDonald's.

Yesterday on the TV they were interviewing that man who has the lead role in a new film (he has downs). DS asked why he spoke like that, I explained and then realised none of my children know what Down's syndrome is or have ever encountered anybody with it. There's no children with downs in their schools, no families with any members who have downs and no businesses that I can think of who employ anybody locally with Down's syndrome.

Other than the SN session at the local pool, I can't remember when I last encountered anybody with downs.

Is it just me? Is it a result of advanced ante natal testing?

In fact thinking of it I'm surprised at the lack of any experience my DC have of people with disabilities.

I really don't want to offend with this and hope I've used the correct terminology.

I think the statistics don't show a drop in births with DS, because as has already been stated, older parents mean higher DS risk. Plus because the NHS used to do only risk-based assessments (triple test) and then invasive tests (amnio or CVS) on the high risk people, there were masses more low risk mums who were carrying babies with DS who weren't detected. NIPT may change that, but equally, the 93% figure comes from the time when amnios meant risk of miscarriage so many people just didn't have screening- if everyone moves to the NIPT test which doesn't carry a miscarriage risk, more people will screen 'for information only' to prepare themselves but not with the intention of termination. It's complicated, but there's no reason to think a world without Downs is around the corner, as the documentary puts it.

I also wonder if it is partly about perceptions. I just asked my dd if she knew what Downs syndrome was and she said no, but once I described it a bit, she said yes, she'd watched a documentary about it (not the Sally Phillips one I think). In fact, I know she's seen people with DS as recently we were in a coffee shop together and the table cleared by a man probably 30ish with DS, but it obviously didn't register with her and she didn't say anything about it. I wonder if this is because of mainstream integration, both my children have had children with quite significant disabilities in their classes, including language difficulties and mobility issues. I just think now they are a bit older, they are not that fussed about seeing people with disabilities (plus have a few in their own family). It doesn't register to them as a massively significant thing to see.

I also wonder if it is partly about perceptions. ...... I wonder if this is because of mainstream integration, both my children have had children with quite significant disabilities in their classes, including language difficulties and mobility issues. I just think now they are a bit older, they are not that fussed about seeing people with disabilities (plus have a few in their own family). It doesn't register to them as a massively significant thing to see.

This rings very true when i think of my DS' attitudes, Bountybar.

And whether it's "sad" or not if (and I don't know if that's true) that fewer people with Down's are born or not - no, it's neither sad nor happy, it just is. Each baby born is an individual, and babies with specific disabilities are not some kind of endangered wildlife to be kept from extinction, but individuals to be cherished for who they are, when they happen to be born. And each pregnant woman should get to decide whether they will keep or terminate their pregnancy, for whatever reason, without societal pressure from what other people want.

There is a man (in his 30s I would guess) with DS who works in McDonalds in our city.

There also used to be a man (prob in his 40s/50s now) who worked in the trolley park in our local supermarket.

I know another young man (early 20s) who helps out at dance classes for kids.

I strongly believe it's good for everyone (DS or not) to do something useful. Good for self-esteem.

You did say that women who terminate should admit that they're 'killing a baby' grateful.

Which is pretty offensive.

I don't think I did say that

YY ArcheryAnnie.
Couldn't stand Sally Phillips comparing people with Down Syndrome to dodos.

Yes you did grateful. That is exactly what you said earlier on this thread.

Your post has been deleted by MNHQ now, but Cherby has cut and pasted part of it ( see just after 10 o'clock this morning).

Do you maybe wish you hadn't said it?

My 10 year old nephew is downs. In mainstream school with a SN helper.

He's a star

My experience is the opposite to the OP.
Growing up, I hardly ever saw anyone with downs, or other disabilities, whilst now I see people who are differently abled all around me, not working usually, but in the shops,and parks. On TV etc.

my son doesnt have down syndrome but he does have a chromosome microdeletion that is beleived to be the cause of his autism and learning disabillities microdeletions/duplications etc are generally not tested for prenatally and yet can cause various disabillities and like down syndrome can be on a spectrum so people can be affected mildly to quite severely being part of our local special needs community i know a lot of children with learning disabillities some that have no known cause so even if down syndrome was eradicated it is only one cause of learning disabillities.

The nature of my job means i see patients with ds and as a result i think theres an increase from my childhood. The range of ld is huge and at the severe end it's heartbreaking to see a human being suffering. I will never forget a man with ds in his 20s with dementia. His care was amazing but he was bed bound and had no quality of life. I wouldnt go into details about why. Ive seen the effect on family members caring for a person with ds, even if very mild ld. Its the associated medical problems.

I firmly believe it should be the mothers choice. A difficult choice but her choice.

i have worked with people with early onset dementia the youngest person i saw with it was 42 diagnosed in his mid thirties prior to being diagnosed with dementia he had been married he had three children the youngest was 3 it was also devastating to his family he also by that point had no quality of life . i agrre its a mothers choice but it doesnt stop anyone being born with learning disabillities i know a lot of children with global development delay due to my sons needs ,in many cases there is no known cause for it and often[not always] these children will grow up with severe learning disabillities.

I think in the past DS held such a stigma, which is why the very high level of termination in confirmed diagnoses is an emotive subject, especially considering that a high proportion of people with DS can now lead a fairly "normal" life.

Several times in the thread comments such as "couldn't cope with a DS child", "wouldn't want a DS baby" have come up which are reminiscent of the stigma. There is no one-size-fits-all for people with DS, it is more of a spectrum, although there are common characteristics that may be expected.

At the end of the day it is a person's choice to decide what they want, but I think it is a positive thing to raise awareness that DS is not an automatic death sentence.

I see as many people with it as I always have which is very little. There's one that works in my local McDonald's.

I'll say one thing which is that all of the people I have noticed with Down's syndrome are adults, I don't see many children. Then again, it has always been fairly rare but I would say the improved antenatal screening has a bearing on it. Sally Phillips documentary was a riveting watch, extremely touching.

Also, the screening is shit.

It is problematic, certainly, but what can be done in terms of screening is limited by the boundaries of medical science.

Screening out certain syndromes doesn't guarantee a child without lds.
Mostly it's a shock... (I think it s a shock if diagnosed prenatal too but you decide to carry on or not ..at that point you have a choice ...)
If diagnosed with lds/disability after birth or later then At that point you decide to cope (and mostly you do the majority of kids with disabilities stay with their parents...) or you give up the child to foster care or adoption. That is the choice available then.

I think of it as your body if working correctly would miscarry these DS foetuses. So you are intervening to aid your body working correctly.

Wow. I'm so glad my body malfunctioned and I have my wonderful son.

Fantastic post ArcheryAnnie

ElspethFlashman

There is testing for DS in Ireland. I paid €200 to have it done privately but it does exist.

Having worked directly with DS children I would definitely terminate for downs.

I completely disagree, it is pretty much impossible to go into town here without coming across one. Maybe it's your area, perhaps their families are being priced out?

But hopefully if the 93% figure is true the disease is gradually dying out. I'm sure we can all agree that in an ideal world there would be nobody suffering from it.

But hopefully if the 93% figure is true the disease is gradually dying out.

It's not a hereditary disease or a genetic trait, so it will never ''die out''. It's a chromosomal disorder which occurs when the egg is fertilised.

If from now on every woman who was carrying a child with DS terminated her pregnancy there would not be any more children with DS born in the world anymore, but it wouldn't be because it had 'died out', IYSWIM.

But hopefully if the 93% figure is true the disease is gradually dying out. I'm sure we can all agree that in an ideal world there would be nobody suffering from it.

Are you completely thick?

It's not a "disease"
It's not "dying out"
People with Down's syndrome don't "suffer"

exactly what i wanted to say Wips ,as i said my son does not have down ,s syndrome but he does have a chromosomal deletion he has learning disabillities and autism he doesnt suffer he has a happy life its not a life we would thought we would be having but that doesnt mean its a bad life.