A World Without Downs Syndrome

Back to Eloethans post on the previous page - this is one of the ideal places to live for older mentally disabled people:
www.cvt.org.uk/communities/botton-village
It was the dream of most parents I knew that their child would be able to live there one day. But places are limited.

Sadly, it's not just learning issues Thingy behaviour problems, some extremely severe, are also possible.

The Down's itself is nothing really. I saw on a Facebook post recently that the first Down's person had passed their driving test! Times have changed for the better, they are no longer kept at home but go to main stream schools, go to work, live independently and even go on to get marriried
Do me a favour and please Google ""chromosomal abnormalities" which is what we are talking about with the Nuchal scan and subsequent tests and come back with something more informed than this trite dismissal .
The difference as I see it lies in the non-invasive nature of the tests which will be on offer. The 12 week scan and Nuchal scan are standard procedure, as is the 20 week "abnormality" scan but the big difference is that an amniocentesis carries a risk of miscarriage so for a much wanted and possibly "late" baby, mothershave to weigh up the risk of losing the foetus altogether which might have only been mildly affected or in fact not at all. The decision is still that if the mother/parents as to whether to continue with the pregnancy, ( in severe cases they may be advised that the baby is unlikely to survive to term anyway) , and counselling is available whatever their decision.
Yes, if you didn't know there are degrees to which the foetus/baby can be affected. But puh-lease spare me the "Downs is nothing"

Sorry Anya and Elegran, I know its not nothing and of course there are many different levels of disability within the syndrome. I just think that if the only manifestation of Down's is learning difficulties it's not the end of the world as there are so many other congenital problems out there which aren't screened for and much more dire.

If the next DGC is affected I will be far more concerned by the physical aspects than the mental challenges ahead for the child. Of course, I hope it's not affected by Downs or anything else as life is hard enough these days!

And the syndrome itself includes a selection from all the all the complications mentioned and more.

Thingmajig - honestly you can't say 'the Downs itself is nothing* .... it can be very different in different people.

I didn't watch the program but read an article about it. I've always thought that screening is good as it gives the parents the choice. Not everyone would cope with a child with a disability after all.

My DD is due her 12 week scan next week and won't have any other testing done ... it would involve a blood test and she hates needles! My main concern with the baby being affected by Down's is the other problems associated with it ... heart defects etc, and they are prone to some leukemias too.

The Down's itself is nothing really. I saw on a Facebook post recently that the first Down's person had passed their driving test! Times have changed for the better, they are no longer kept at home but go to main stream schools, go to work, live independently and even go on to get married.

I don't believe for a minute that everyone would choose to abort Down's babies.

I has to be the mother's choice. She will be the primary carer.

And those who recognise the differences between people with Downs Syndrome are correct. There are those who are 'delightful' and can even hold down jobs, but there are those who will never live independently and some who are very violent.

I did not watch the programme, because I had read quite a bit about it and thought that perhaps the writer was writing through rose tinted glasses. However I think the OP is a little harsh. Yes, of course life is hard, harder if you have a child with a handicap and just as difficult for that child, BUT to abort because life is hard?
I think I would always wonder what the child would have been like, and how he/she would have grown. There are of course all sorts of problems with children with handicaps, and I was always sad when one of the young people I knew in our group died, and the parents would inevitably say "They are safe now" - yes it was a relief to know that no further harm could come to their child, and they themselves would not have to worry about the future, but at the same time, none of them had ever said "I wished he/she had never been born". and the child had always been much loved, which is the most important thing.

I may be wrong, but I thought it was mentioned that Sally had had a test that showed something like a 99% chance that she would not have a Downs baby.

Not everyone's life is rainbows and happy endings no matter if they have a child with disability or not . Aborted the children never experience rainbows or storms .

Has any Downs person ever been arrested for murdering a parent?

My neighbour where I used to live had a boy of 16 with Downs and he used to terrify his mother. He was well over 6 feet tall and built like a boxer and very strong, but would have tantrums like a 3 year old, throw chairs at her and threaten her. She was struggling to hold the marriage together and to give some reasonable attention to her 12 year old daughter. Because this was a rural farming area, there was little support for the family, except for one day a week when he would be collected by minibus (if they could get him on the coach because sometimes he punched the driver), and taken to a day centre to give the mother some respite. I believe women should have the choice as everyone's circumstances are different, and it's not all rainbows and happy endings.

But what of the child's right to life?

Thanks for clarifying, blueb.

Very well put Eloethan, I worked with learning disabled adults and their families for many years and your comments are spot on .

Excellent post Eloethan and I agree with all of it.

I found the programme thought provoking. It must have been hard to abort a baby at 27 weeks! That can not be right. But she was right to defend her position and not give in to the argument else how could she live with herself?

I taught SEN for many years and did feel there was a very Pollyanna spin on Downs in the programme.. They are not all a chirpy potentially bright bunch of children. Some are a delight of course and great fun. But some are stubborn and very difficult t o handle with behaviour problems.

My theory was that a downs child was what the family made her/ him. If given lots of love and independence then that grew. If fussed over too much or even, dare I say it, made the family clown , then that grew too.

I do not think however I could abort such a foetus if I knew, but that child will.need a load of love and correct parenting to turn out as a successful adult.

The big question is the morality of where/when do you stop screening out children with any disabilties you as a parent would not like your children to have. Congenital deafness blindness etc. which are not essentially life limiting.

I am not totally anti termination, how about babies with an appalling disease like Epidermis Bullosa, (I don't think it is possible to screen that out yet) but it is incredibly painful for the sufferer?
Genetic modification might one day to be able to cure Cystic fibrosis and a number of diseases like that.
Does that then morph into choosing the genetic traits you as a parent want and not others?
There was that American man who claimed he could virtually "create" what he felt to be a perfect child. There are no easy answers to this.

No Thatbags that theory s not right either it distinctly said that Downs was now practically unheard of in Iceland so it was nothing to do with them only taking a poll of those taking the test as it appeared they have almost wiped it off the map in that country

I m only saying where does playing God stop ? Do we have the right to say this child isn't my idea of what I thought it would be this is going to be tough so we ll kill it and try again

And I don't complain about lack of choice for the still births of two of my children, there was no choice . We are discussing decisions to abort are we not?

Neither do the ones that abort naturally, as 50% of my pregnancies did. Nobody complains about their lack of choice.

No one would want to be faced with that decision but some are, what troubles me is all the caring seems to be for the parents not the child who doesn't have a choice of life or death.

Maybe those women who already knew they wouldn't want a termination whatever the result of the screening, weren't included in the 100%, blueb. Maybe they never even had the screening. I refused amniocentesis when I was pregnant with DD1 (don't know why it was offered, actually; it was rather a pushy registrar). My attitude was that I'd cope. Twenty years later when pregnant with DD3 I did have an amniocentesis test. Fortunately all was well because I wasn't sure of coping with "whatever" by then.

What I'm saying is that it may just be that 100% of the women who had the Downs screening and in whose foetuses the Downs genetic abnormality was discovered, also had terminations.

When I was working I came across several children with Downs, of different levels of ability. After I retired I had part time work with 2 children with Downs - one, a boy quite bright, I was teaching him reading. The other, a girl, had multiple physical problems, couldn't communicate verbally. I loved both of them, the boy especially had a great sense of humour, but was also very stubborn. The girl could be difficult too.
I certainly wouldn't want to be a parent faced with the termination decision.
Another point is, they can often be born to older parents who are themselves physically less able to cope. The parents of the 2 children I worked with were in early middle age.

I didn't watch the programme but I read Sally Philips' long article in last Saturday's Weekend Guardian.

I think it should be entirely up to the parents as to whether they proceed with such a pregnancy. Not everybody feels able to take on the responsibility of caring for a special needs child and some Downs Sydrome children have quite severe learning difficulties and significant health issues.

Sally Phillips lives in a house with a "large garden" in south west London and I can't recall what her husband's job was reported to be, but it was a senior, professional job which no doubt is pretty well paid. Sally, as a well known actress, is probably quite well paid herself. Presumably they can afford to get additional support if they need it.

What about families, perhaps with other young children, where both parents work in only moderately paid and inflexible jobs. It is much harder for people with limited means to cope with the additional pressure of a child who will require much more attention and guidance and who is unlikely to be fully independent even after reaching adulthood.

In my opinion, it is a good thing that mothers can find out early in the pregnancy if they are carrying a Downs Sydrome child and make a decision as to whether they wish to continue with the pregnancy, rather than having to make such an agonising decision much later in the pregnancy.

I don't think parents should be pressured one way or the other as to what they should do. There will always be parents who will wish to continue with the pregnancy and I think they should be given every support possible - unfortunately that is not often very much.

I think it must be a most terrible dilemma for a parent and I don't believe that anyone should be accused of being "selfish"for having a Downs baby (as Richard Dawkins suggested a while back) or "greedy" for deciding not to.

My husband worked with people with learning disabilities, some of them with Downs. They were not all happy and gentle and easy-going. Like anyone else, they could at times be quite grumpy and difficult to cope with. When their parents got old or ill it could become difficult if a fully grown man in a temper started to throw his weight around. This was often when residential care became the only practical option. At that time the homes in which they lived were lovely - comfortable and homely, with big kitchens and home-cooked, nutritious food, regular parties and socials. A few years down the line, with the Council hit by cuts in government subsidies in this deprived area, one of the best of these homes was closed and the land sold by the council to make way for private flats. The residents were shipped out, separated from their special friends and the staff they trusted, and moved to a variety of other housing provisions. That is the reality of it for many people.