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.

What I find awful is that society values those who work caring for people with disabilities so poorly that they get paid minimum or close to minimum wage. It doesn't promote outstanding care, though some achieve it despite this. One of my main considerations if I had a pregnancy with a positive test for t21 or similar would be what happens when I am no longer there to care for my child? If we fix that then maybe we begin to resolve some of people's fears of having a child with DS or other condition.

Possibly to do with demographics.
In the 1970s and 1980s women tended to have children early and with the advent of reliable contraception less will have been conceived. Those babies are now adults so you see less adults with DS than years ago.

Previously women continued to have children later, but with no screening. So there were more conceived and born. As a child you would have noticed those children.

I have a friend who has a child with a syndrome similar to DS.
Her child was at mainstream school until age 7 when the pace of learning was beyond her.

She has a plethora of health issues and her mum worries so much for her future. She will never be able to live independently and so the parents are trying to set up a future for her- with them and after they are gone.(Life expectancy for their child is unknown, but may succumb to heat failure. kidney failure etc).

The parents have aged hugely with the stress yet the daughter is a delightful child. So outsiders see a lovely friendly kid. The parents see that but the whole picture too and they can never relax.

Its not all pretty as Sally Phillips implies.

It is all relative, isn't it? Life with a person with Down Syndrome can be marvellous for a set of parents, but nothing other set wants for themselves. I have no children, I love my quiet house and doing things on my own, I love my life!. People who love having lots of kids and noisy houses would look at my life with horror and pity.

I personally would remove all disabilities if I could. I don't understand the concern that there will be fewer people with Down Syndrome... would other posters really want MORE people with disabilities? Would they hope a child of theirs was born with a disability? Because it is very easy (and extremely selfish) to wish there were more people with disabilities, as long as someone else cared for them and dealt with all the issues above and beyond the smiley faces.

And it is invariably women who provide the long term care, often at the expense of their own opportunities & aspirations. If you have a child with a disability & an able bodied, neuro typical daughter, society will expect your daughter to step up when you are gone - but your son would probably get off Scot free to live his life. These 'choices' are so gendered.

I think most if not all disabilities are on a spectrum. My 3 year old has an unknown syndrome that is very similar to DS. He has learning difficulties (he behaves like a 20-22 month old), various health issues and physical disabilities. I don't know how much care he will need as he grows up, probably a lot. The appointments and operations are already overwhelming. I'm caring for him fulltime. DH was forced to give up his job and go freelance (with a massive pay cut) 2 years ago because he kept getting in trouble with work for taking unpaid parental leave for DS's hospital stays so he could look after our other children.

Having any child is a massive risk. So many conditions/illnesses present at birth can't be tested for and then there are accidents, cancer etc that can happen to any previously healthy child at any time. The tests we do have don't give the full picture. Downs syndrome can mean anything from a person who can work, get married and live independently to someone who is incontinent and needs constant care. Same with autism, cerebral palsy and many other conditions.

I'm biased because I spend more time with children who have SN than most but I know several people who have Downs syndrome (about 15 or so) and haven't noticed a decrease.

To be honest I think it's a good thing.

Let me firstly say that I don't mean to offend anyone, and I know that people with Down's can and do live wonderful happy fulfilled lives but it is not something I would choose for a child of mine.

DW and I were getting towards being 'older' parents in the eyes of the medical profession so we had the screening tests and we were both agreed that if there was a high possibly of Down's that we would have terminated. Personally we just don't understand why you'd carry on with a pregnancy when there was almost certainly a baby with a severe disability there. Surely you just want your child to be healthy?

I guess we have had our view coloured by an acquaintance who had a son with fairly severe Downs and her family life pretty much imploded, marriage suffered, older DC's suffered, just. It a nice situation for all involved really.

As for campaigners wanting to get the new , more accurate tests banned in case it encourages more terminations, well that just boils my piss! Who the hell are they to dictate to others whether they get to choose a reliable test for their own baby?? Why don't they just fuck off and love their own lives and not interfere in other people's.

gratefully SP stated it in her documentary mentioned upthread.

It's important to remember that the people with DS who you see out and about are the ones less affected by it. I've known a couple of people with DS and they worked and lived independently and were well. That's not always the case.

I think whilst the SP documentary helped raise the awareness of genetics testing and provided food for thought, it was very unbalanced and one sided.

The reason why very few people are seen with DS in the community is because many die before, during or after birth due to massive heart defects. Others die in childhood and early adulthood due to these defects.

The adults with DS, who do not have fatal heart defects, have a huge range in terms of physical and intellectual disability. You will never see those who have the worst disability. They are in care homes/institutions and need 24 hour nursing care, are non verbal, immobile, doubly incontinent, have swallowing problems, digestive difficulties, and of course, huge heart defects that affects breathing and circulation.

Downs isn't as rosy as it is made out to be....

I don't see people making Downs out to be rosy. In making the difficult decision to continue with my pregnancy, we weighed up all the scenarios. At the end of the day, for us, we couldn't terminate on the basis of a worse case scenario. After 3 miscarriages, it fundamentally felt wrong to terminate for a potential worse case scenario.

We're not going into the birth with rose tinted glasses on. Our baby will need open heart surgery within 4 months of being born. We know she'll have some level of learning difficultly and other health problems. But, she's still going to be our child and worthy of our love and her own place in society.

I don't judge those that tfmr. It's a very personal decision. I just wish that there was greater awareness and counselling for those that receive a diagnosis in pregnancy.

The NIPT is brilliant, and should be offered on the NHS. We had to pay privately (which we couldn't afford, it went on credit) so the we could prepare ourselves, and the medical team knows what it'll be dealing with. I Could have had an amnio, but at the time of testing, the risks we were given of miscarriage were higher than the risk of downs. Why have an invasive procedure when a blood test will provide 99.7% accuracy.

Well I live round the corner from an adult with DS and he works in the local McDonalds so I see him quite a lot, but I don't thin 'there's that man with DS' I think 'there's X'.

DS is a syndrome, it has a huge range and although that may be the given reason for terminating I'm not so sure, if you have the test surely they will scan to see things like structure of the heart?

Lots of people with DS and/or other learning disabilities attend college mon-fri and I think they are less visible due partly to clothing. When I was a child it wasn't unusual to see an adult woman with pigtails and child like dress out with her mum. Now that woman would start college at 16 and start to dress like other teenagers.

Mainstreaming was becoming more common when I was at school and there were other kids and teenagers with DS and severe Autism in some of my home rooms (they generally weren't in my subject specific classes) which generally worked well.

I now work in the health sector and can see the huge positives in the move away from institutions and into community based care. However if I had a further pregnancy I would test and definitely terminate as although some individuals have a great life and are very happy many others are not. There are too many unknowns for me and I personally would not want to take on the responsibility during my lifetime or the concern over their future care (now that lifespan has increased).

Have just been reading "Far from the tree" which is a fascinating look at this and other horizontal identities and parenting.

Don't do it then.

I think forcing a woman to continue with a pregnancy against her wishes is heinous.

"I personally would remove all disabilities if I could. I don't understand the concern that there will be fewer people with Down Syndrome... would other posters really want MORE people with disabilities? Would they hope a child of theirs was born with a disability?"

I think this goes back to the 'when does a bunch of cells become a person' debate though. Someone who believes that the person is created at conception or soon after could say that we're not reducing the number of children with DS that are conceived, simply the number that are born alive.

Having DD1 at special school has shown me how much quality of life our disabled young children get. They enjoy life. It's not the same life their NT peers live, but it is a life worth living. Having said that, many of them do have life limiting conditions.

would other posters really want MORE people with disabilities? Would they hope a child of theirs was born with a disability?

I feel this and one or two comments from other posters are missing the point.

You talk as if we're talking about a cure for downs. We're not, we're talking about killing babies with downs. It's not about wishing disability on people, it's about understanding that those who have disabilities forced on them by an accident of nature get to experience life.

The danger, as some of the anti-testers see it, is essentially a programme of eugenics which eliminates those who aren't perfect.

society will expect your daughter to step up when you are gone - but your son would probably get off Scot free to live his life.

That is a massive assumption and untrue as I have experienced it.

Another problem - do those who have the tests and then abort really research what is available as far as care and support of those with downs and their families are concerned? I bet they don't. I bet the vast majority have a google, see the horror stories and base their decision on a combination of that and a nebulous fear of what may or may not happen in thirty years' time. I have seen a lot of assumption on this threads that are just that - assumptions. And on the basis of these assumptions lives are aborted.

There are 3 downs children at my child's mainstream school. I must say I'm always pretty moved how the rest of the children help them (from what I have seen)

Highly personal choice - I find it odd that so many people feel free to comment on what is probably the most difficult decision any parent might have to make.

I have to say, I come from a standpoint of a family member with severe cerebral palsy, who was disabled after a childhood illness. So firstly, don't think that because you terminated your baby with downs you won't end up with something worse.

Secondly, we used to look at the kids with downs and fondly wish that our family member had downs rather than the (far worse) cerebral palsy.

So downs has never seemed like such a big deal to me.

If you have an opinion of course you can comment. That's not the same as dictating what other people do, which is wrong imo.

I bet you'd love that, wouldn't you gratefully?

Sorry, love what?

If someone terminated a pregnancy with Down's and got "something worse" in a subsequent pregnancy.

It's simple (to me.)

I will try to control what I can. I can control to a point whether or not I have a child with Down's.

I can't control whether any of my existing children acquire a disability later in life.