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.

rainy I think most people would agree that it's not ok to terminate for non-preferred gender or hair colour, but that it is ok to terminate for serious genetic conditions and then there is a massive grey area in the middle where rapid advances in genetic testing will give parents a huge amount of information and these decisions will become much more complex.

If you could magically "fix" or cure all disabilities would you? So all people had fine healthy bodies and minds?

Of course!

I watched Sally Philips' documentary today that I'd recorded. It is sad. I didn't want screening when I was pregnant because it wouldn't have made any difference to me but OH wanted it as he wouldn't have wanted a baby with Down's syndrome.
I think we can learn a lot from them actually. As a person who over analyses things and finds it difficult to be happy, id love to have a predisposition to happiness.

People with downs don't have a "predisposition to happiness"?!?

Where did you get that from??

Perspective21 - your son is gorgeous, love the halloween picture especially, thanks for sharing them!

My cousin has a son with downs syndrome, he's about 8 now. Also have a friend whose son has ds he's in the same school as my son and I think he's 10 now. There was a lady with ds who worked on reception in my high school too. I haven't really noticed less people with it to be honest.

dixies

Dublin It probably matters to those people who have dc with those conditions and for all we know that poster might have

I had a son with T21 which was "incompatible with life". Frankly I get sick and tired of people implying that life is always rosie when your child has T21. It's not it can be utterly shit

Perspective your son is gorgeous. thank you for sharing.

When I was pregnant 13 years ago I was given a 1 in 40 chance of my son having DS.

Having looked after a little boy for 2 years with DS I felt I could handle the challenges.

I opted not to have an amino. And adopted a wait and see approach.

DS does not have DS but does have high functioning autism and is now at a SS. One thing I have learned - we do not know what we can cope with until we have to. My DS is a joy - although things can sometimes be hard.

So screening can not pick up all disabilities. The thought of advanced screening which could pinpoint autism with no way of knowing where a child would be on the spectrum fills me with some horror.

I do sometimes think some posters are thinking, if not outwardly saying:

You WILL have a child with Down's syndrome. Whether or not you want to.

 Baffles me, it does

No. what I'm saying is that having a child with downs isn't all doom and gloom. And yes, of course it makes me sad that people feel their life would be ruined if they had a child with downs. Mine has been enhanced beyond belief.

I can imagine a dystopia where, once we have all this superduper screening, no help, money, respite or benefits will be available to those with testable conditions because the parents "brought it on themselves" by not terminating....

I think Wips, people just think 'that's not a life I want.'

No reflection on you, any more than someone deciding not to have a third child means my DC3 should not have been born.

No one should be judged or given a sad face because they have made the decision to terminate a pregnancy because of this screening' I agree with this. Some people feel able to bring a child into the world with known disabilities, some don't feel able. No woman should be made to feel guilty for deciding to terminate a pregnancy for any reason

^this

It's never going to be 'common' to see a DS kid as the chances of the mutation happening are tiny in the first place. I don't think prenatal screening is a bad thing, in fact I'm all for it getting more accurate and talk about definites instead of chances, so parents can make informed decisions that are right for their families.

I chose not to have the triple test in my first pregnancy, because I had no intention of having an amniocentesis if the results were high risk, so didn't see the point. The nuchal fold wasn't available then, although I also declined that in my future pregnancies.

Now that DD1 has her diagnosed but not defined SN, I wish I'd had the triple test because I'll never know what profile she had in utero and I'm nosey!! She's been in the DDD study (micro array testing) for 4 years now and is just enrolling in the 100,000 genomes study - her choice (although bearing in mind that she's 11 but developmentally functioning at 5 or so years). She wants to know why her brain is like it is.

Would I change her? I'm not sure what parts of her are her innate personality and what comes through her disability. Her complete trust and friendliness is a function of her disability - she doesn't have an appreciation of risk or strangers. Similarly her gutsy 'can do anything' attitude: when you don't have a sense of danger, you're going to be more willing to tackle challenging tasks...she gets angry and frustrated because she's got an 11 year old body but she feels little on the inside. She wants to be a big girl but she feels like a little girl. But if I take her disability away......I'm not sure who I'd be left with. And the girl she is is amazing.

I don't think people get it. You can passionately love, value, respect and cherish people with Down's Syndrome or any other condition at the same time as passionately believing in and demanding a woman's right to bodily autonomy. That I would terminate for Down's and many other conditions says nothing about my feelings towards and regard for people who are born with them.

There's a boy with DS in DD'S mainstream class. He is non-verbal and sometimes uses a wheelchair.

We visit a local farm park which employs people with LDs, and a number of teenagers with DS volunteer there, and some are paid. It's a wonderful place.

I was just watching Coronation St and was wondering if there was a 'spectrum' of Downs and I come on Mumsnet and there's a thread answering my question.

There's a character in Corrie with Downs, he works and is very independent so that's why I was thinking about it. There's a character with Downs in Eastenders now I come to think of it. Don't know anyone in real life anymore.

I use to know a couple of baby's / toddlers with downs when my DD was young but that was 15 odd years ago, I have any meet any in a long time.

I will also say that the antenatal testing can be very useful if you decide to continue with the pregnancy- by giving the medical teams a heads up, it allows them to prepare for any advanced care the baby may need at birth.

Informed choice is key. These are often heartbreaking choices - to be told the foetus has serious abnormalities and may only live a few days is surely one of the toughest things you'll go through. No one needs judgement on top of that. There needs to be information available for couples to make the choice that is right for them. Then the choice is theirs. Full stop.
There also needs to be a lot more logistical and financial support for families with children with additional needs - people get very passionate about the rights of the foetus then don't seem to care once they are actually born. To me that's less about truly caring for all members of society and more about controlling women's reproductive rights.

alltouchedout, hear hear! That's spot on.

I'm the poster upthread who did terminate because of Downs. We have several disabilities within my family, including yes, one person with Downs! I didn't mention it because my feelings for them have NO BEARING on the decision I made for myself.

My paternal aunt (now passed away) and maternal cousin both have/had Downs Syndrome. The difference in the support they received, particularly at school, was huge.

For my aunt's generation, many of her peers were literally placed in care homes and raised by complete strangers - my grandparents were disowned for refusing to give her up. At my Christening, mum was cornered and berated by older relatives for letting Auntie Lindy hold me!

My contrast, my cousin left school with a few GCSEs, did a fairly basic NVQ and has gone on to have two children (neither of whom have Downs), though she does still have specialist support workers.

I can't help but wonder whether people with Downs are less visible because of the improved support and independence some are experiencing. A minibus full of people day tripping from their care home are far more visible than one young woman on the bus.

A couple of more pithy points...

1. People with Downs are people. My cousin can be a complete b*tch if she doesn't get her own way, even now.
2. Supporting a family member with Downs can be rea

There's definitely a spectrum. A colleague recently confided to me that has Downs but it's so mild you can't even tell either by her looks or her 'intelligence' (she is among the top of her field). But she and her DP have decided to conceive via donor eggs,because she would feel heartbroken if she passed on a particularly severe mutation. People make decisions that are right for them, and it's nobody else's business really.

You raise a good point op . I know one wee boy in DS class - that's literally it . This make me feel very sad

Whoops, ...really hard, regardless of where they fall on the spectrum.

I personally don't think I could raise a child with Downs. I loved my Aunt dearly and love/tolerate my cousin 😊but having seen the daily reality, I wouldn't choose to have a child with Downs.

it's so mild you can't even tell either by her looks or her 'intelligence' (she is among the top of her field).

She probably has mosaic Down's Syndrome, in which the extra copy of chromosome 21 isn't present in all the cells - it's quite a different kettle of fish from Trisomy 21.

I see lots of people around the place with DS, but I have a hypersensitive DS radar, having a DD with the condition. She's 2.5 and absolutely fantastic.