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.

It's a very interesting point isn't it. My DS attends a broad spectrum special school but of over 160 pupils there are less than 10 who have Down's syndrome. There are a significant proportion of pupils who have cerebral palsy and brain damage resulting from very premature birth though.

I don't know what point I'm trying to make actually other than it's interesting that so many people feel they couldn't cope with a child with a disability diagnosed in utero, but if a baby is accidentally born extremely early then a parents instinct is to fight for that baby's life no matter what the cost.

The documentary was good. I think parts would be good for your children to see for instance when her son is playing with his siblings like any other child. But IIRC a big proportion was about the new tests during pregnancy so wouldn't be if interest to children

OP maybe you watch it first then watch it with DC? I'm 35 and know I'll find it a massive tough watch.

Mind you, that's because - biologically - I'm sailing into the territory of having shorter odds on a test just as I'm starting out on having babies and it's closer to home for me?

anyway, I'm not making much sense here x

SP son is high functioning and she admitted on the documentary that she could afford extra support for him.

I've just had the Harmony test and I couldn't give a fig what she thinks about it, I'd want to know either way.

If you work in the NHS or social care you'll see plenty of patients with Down's syndrome.

I wouldn't want my 11yo to watch the documentary as a woman talks about her decision to end her pregnancy, and speaks a little about the procedure.

Lots of MNetters were angry about the film. I'm surprised you haven't been flamed yet OP.

I saw the Sally Philips documentary, it was very interesting, I would say it's fine for an 11 year old, she was exploring a new way of testing which could lead to no more downs children being born
It was very touching at times
My daughter is 13, there's a girl with downs in her year at mainstream school, she's so lovely and popular, there's also a man with downs who shops where I work a really nice guy

Maybe you should watch it alone first, just to be sure, my memory is shockingly bad, but the majority of it should be fine

It's probably worth saying early on in the thread that this could be very emotive. My DD has SN and goes to Special School. I'm of the mind that people with SN have a valuable contribution to society. However, there is no denying that raising children with SN is hard, or that Down Syndrome is a spectral condition. As with all chromosomal conditions, some people will have a very strong expression of the genetic traits that it brings and others will be affected more mildly. The children who grow up to take GCSEs, live with a large degree of independence and work, etc., are not experiencing the same life as those who grow up completely dependent on others, doubly incontinent, etc. They have a condition with the same name, but there the comparison ends.

So, while I chose not to test for DS and chose not to have any screening bar the anomaly scan, I think we need to be cautious about being insensitive to people who may have made difficult personal choices.

The Sally Phillips documentary mentioned that there are now less than 40,000 people with Downs in the UK. I think someone made the point on another thread about the increased risk of heart-related illnesses being a factor in why women terminated pregnancies.

I agree with lougal
The documentary only really shows one side, there is a broad spectrum for downs, and while some people lead full lives it can be debilitating for others

I certainly did not mean to offend anyone and personally had all the screening tests offered.

It surprised me yesterday when all the DC clearly didn't know what downs syndrome was or could even recognise somebody who has it.

They have a condition with the same name, but there the comparison ends.

Quite. It's not simply a case of "children with Down's Syndrome are very affectionate and loving and funny" which is how it is often presented. Of course there are many children with Down's who are all those things. There are also children and adults who are very very disabled by it, who need full time care for their who lives.

No one should be judged or given a :( face because they have made the decision to terminate a pregnancy because of this screening.

There was a boy with Down's in my children's year at school.

Showing my own ignorance here but I didn't know there was a spectrum of DS. All the people I've encountered have been in mainstream schools/working/out and about as usual.

Shakirasma on your point re premature birth. The difference is that parents of very premature babies do not know what the outcome for their child will be. Serious disability is not a certainty. Also, by the time a baby has suffered an event leading to brain damage, s/he will likely have been alive and loved for days or weeks.

But also more people with DS are living longer lives and are less likely to be hidden away in institution so aren't adults with DS more visible these days.

I want to politely remind you all that there are plenty of women who use Mumsnet who have been through the horrendous experience of prenatal testing to find out if their baby is going to die.

Downs Syndrome is a trisomy where there is an extra copy of chromosome 21. There are two other trisomy conditions that are tested for alongside Downs Syndrome. These two conditions are not compatible with life. The babies die, whether in the womb or after birth.

It's not as simple as only screening for Downs.

I am one of the 93% who opted for a termination when I found out my baby had Downs, because I also found out they had the associated heart conditions. We were told our baby would likely die before birth, or need a lot of surgery. I didn't terminate because I didn't think I'd cope. I did it because I didn't want my baby to suffer.

Although, I should add that I don't think there is anything wrong with 'not coping', given that not everyone has the money, support and privilege to cope.

Yeah there's a broad spectrum, some are high functioning can hold down a job, live independently perhaps with a little support. Others can function well but couldn't work/live alone and sadly some are doubly incontinent, in a residential home with full care and can't speak or feed themselves etc.

I knew two people with DS when I was a child. One was a woman who was already an adult. The other was a little boy several years younger than me.

I would say they were both what would now be classed as high functioning and yet neither of them were in or had been in mainstream education. The adult woman had had no education at all, not even in a special school. The little boy went to a special school.

I am pretty sure these days they would have been able to go to a mainstream school with support.

Not sure where I am going with that exactly except to speculate that although their may be fewer people today with DS the people who have are likely to be more "visible" and integrated rather than hidden away as they once were.

There's more support now.

I have a DS with downs. We were referred for physio when was six weeks.

Most of the children I know come through the heart surgery very well.

I think one of the points Sally was trying to make was that the information given to parents on diagnosis is outdated and a bit skewed to the negative, yes not all children will be high functioning but they should still be able to live happy, fulfilled lives.

Yeah OP, no abortions here and little or no prenatal testing. I believe Harmony is available privately but apart from the odd poster up in the midwives clinic you won't know about it so not sure what the uptake is. I never had, or was ever offered any.

All you get is the 20 week scan basically, so a lot of DS babies are a suprise.

That said, it's therefore something that's "expected" so from what I've heard you're taken very well care of in the hospital. Lots of support in place.

Downs Syndrome is a trisomy where there is an extra copy of chromosome 21. There are two other trisomy conditions that are tested for alongside Downs Syndrome. These two conditions are not compatible with life. The babies die, whether in the womb or after birth

I wish people would stop with this incompatible with life stuff, it is beyond offensive. Trisomy 18 and 13 are both perfectly compatible with life, in some cases until the age of 50. However for most they are severely life shortening conditions (although how much of that is because of lack of treatment is certainly a question) and often result in miscarriage or stillbirth. Zero judgement on anyone who chooses to terminate or continue a pregnancy with any trisomy whatsoever but perhaps we could stop with offensive, outdated terminology, the medical profession generally has.