Oh FFS I am shaking... has there been a thread yet about Minette Marin's unbelievable column on babies with Down's syndrome?

[emkana]

words fail me

I disagree with the statement that certain foetuses should not come to term, but ONE thing Mirren Minette (or whatever her name is) says is true.. Now it is unacceptable to terminate a pregnancy. I had a good friend who decided to lie and say she'd lost a baby at 21 wks. She couldn't have coped with the judgement. I feel she was entitled to make that decision herself. How other parents feel about their beautiful blessings was irrelevant to HER.

I also disagree with the 'damaged family' bit. As I know families who had to 'heal' if that's the right word, but they certainly did, completely.

My son has some SNs. And it's not a walk in the park. Plenty of people have it harder, with less hope in the future, more hospital apts, etc, etc, but I know that the family you already HAVe can affect the decision to add another child who'll need extra help and support (above and beyond normal help and support) into the family.

People will make their own choices, based on their own perceptions and experienes, and based on reading horror story articles.

That there are only a very very samll minority of disabilities that can be diagnosed in utero however makes it a VERY contentious issue... because tehre are SO many disabilites which have a crippling effect on children and thier families that don't become apparent till AFTER they are born - BUT all these people who say 'Oh I'd terminate if it were Downs' but then sit there in HORROR when someone suggests takign the dfiisabled POST birth child/parent/dog walker out back and seeing them off with a shovel to the head - HOW is it different?

How is aborting a child BETTER then euthanasia?

Nd Abrtign a child on teh grounds of SN is VERY different to aborting a child very very early in teh pregnancy because its unwanted..

with Downs etc its a case of not wanting it anymore

that IS genocide in MY opinion, and if its not - well it sure as shit ain't rock and roll.

If I had a pound for everytime I get asked if I woudl have kept ds2 if I'd know - I'd be considerably better off...

He has Autism.

No one asks me the same of my older son who we're 99% sure has Aspergers

No one asks me if I ever consider doing away with myself becuase I'm either HFA or AS...

And I apologise now for any spelling errors - I can't SEE the mistakes or I would correct them.

all I have to say is FFS

the word choose is a red herring imo
no one "chooses" to have a disabled child.
you choose to get pregnant but you cannot imo choose what kind of child you have.
no one gets pregnat and thinks "oh I hope my dc has a disabity"
no one chooses to have their babys brain damaged at birth.
if people are going to say "oh I couldn't have a child with sn as I wouldn't be able to continue to(insert option)" what if the hospital cocks up pr
what will they do if their child is ill or has an accident. Oh I suppose they could go down the JH route and abandon the baby.

I've not read all of this yet.

Needmorecoffee, totally agree with you. FFS!!

When my son was born, we had no idea that in the future (aged 7) he'd be diagnosed with a disease that needs 24 hour monitoring and a high level of care - type 1 diabetes. I had no idea. No one knows what the future will hold for their children and whatever type of SN they may develop.

My close mate has a child with DS, she was not picked up on screening. She is a joy to all those who come into contact with her and personally, has enriched my life considerably. My friend is likely to outlive her child, but who knows what will happen to any of us - this is the reason that I've made provision for guardianship of my children in my will.

Life is beautiful and precious and none of us know what is around the corner.

if you don't like the unexpected then don't have kids. Friend had a son who got meningitis at 8 months. He is severely brain damaged now. My eldest dd, born 'normal' buggered off at 14 and broke my heart. Friends dd is a heroin addict.
My youngest dd, brain damaged at birth - but she wont run off or become a heroin addict.
Children are a lottery. If you only wan't a 'perfect' being to mould then get a dog.

It's one side of a multifaceted debate. She does make some good points. My partner works with adults with learning difficutlues, a lot of them with Down's and her views echoed a lot of what is felt by them and their families. Life is hard for many of us. It is especially hard for those with disablites and their carers is all she is saying. Those are very good grounds for deciding whether or not to carry on with a pragnancy - any pregnancy.

you could eaqually say if you don't like the unexpected then don't get married or get a job. Things happen. Some people want to take the opportunity to stop what they may consider a bad thing for them.

ou can say that. You can say anyting. Ethics boards must discuss all sides of the debate. It's good to have conflicting opinions and people who know how to argue positively.

'My partner works with adults with learning difficutlues, a lot of them with Down's and her views echoed a lot of what is felt by them and their families'

but in fairness mt my experiece as someone who worked in sn before hving sn kids is that what you see is part of the picture only.

you miss the love.

Oh yes there's sheer grunt work involved; sometimes heartbreaking things happen- like ds1 thumping me at school last week, or finding ds3 abandoned in a corner alone yesterday because he ate lunch too slowly (he is swapping schools anyway though) but it is covered for by love, something that makes every challenge worthwhile and enables you to work things out.

that's the bit that's hard to explain to people though, esp. those who don't have any children.

I'm amazed at how many 'work in SN' and then opinionate.
Generally families with actual experince don't come up with the same stuff.
Let me guess who actually knows....

and I'm quite shocked at how many of those who 'work in SN' would terminate/kill etc etc a disabled baby. Makes me fear for dd really. If she picks up that attitude.

most people in sn care are there because its easy to get ca job there ime.

there are some fab ones though and some fab units- even some I would send ds3 to if needed and that's saying something! (protective? moi? surely if i keep popping out kids one will want to be his carer... ........ scared dh runs rapidly towards vasectomy clinic)

but who needs vasectomies when there's co-sleeping LOL

"most people in sn care are there because its easy to get ca job there ime."

Sorry, Peachy, I just don't understand this sentence. Most people in Special needs? With sn? Or easy to get a job as a carer in a day centre? Can you clarify?

"you could eaqually say if you don't like the unexpected then don't get married or get a job. Things happen. Some people want to take the opportunity to stop what they may consider a bad thing for them."

Totally agree, beanieb.

If I could rewind time and have a test that told me that J would have autism and be who he is, I would still do everything just the same. He is the best thing I've ever done and I can't imagine I will ever have any other achievements that rate up there with him.

BUT...it has nearly sent me over the edge at times, coping with the violence, the self-harming, the endless fucking papertrails with the LEA, school, DLA, Social Services. It's like a full time job, but I also have one of them to pay the bills. Sometimes, as so many of you know, it's very very hard.

So I'm fine with saying that I would do the same thing, but some people couldn't cope with this, with having a disabled child and all the shite that comes with it. So that's got to remain an option: to be able to respond to a test that says that you have a high chance of having a child who will require so much more than you expected from you by saying that you can't handle that.

Of course parenthood is about dealing with what's thrown at you, but some people aren't as well equipped to do that as others, and do we really want even more mistreated, abandoned and unwanted children in this world to be put into the broken system that is called our 'care' system?

Like beanieb says, you can't predict everything BUT you can react to information about that thing happening by deciding that you want to avoid it happening. Like if I hear that the M60 is jammed, I won't go on it. But that doesn't mean I'm never going to get in the car and drive anywhere, just that I don't want to sit in a traffic jam so I'll choose a different route.

I think the article was tactless, ignorant and odd. But I do think that we're developing this horrible attitude that people who have abortions = bad and people who don't = saints. The truth has to be that people do what is right for them. If someone doesn't feel able to cope, that is their choice to make. It doesn't mean they're into genocide or that they're disablist. It doesn't mean that they hate disabled children. It's just a personal decision. I know that if I got pregnant again, I would have to think very carefully if offered tests. I could not cope with another child with J's needs. I just couldn't. Not a value judgment on disabled children, just a practical reality. So if I was told when there was still a chance of doing something about it, I don't know what I'd do. But I would want that option and I want other people to have that too.

One of the big concerns for me is that people who don't have the disability (whichever one) are constantly guessing what quality of life we have. I'm often told how 'brave' I must be to endure all this 'suffering', because in people's minds, all people on the autistic spectrum must be suffering bravely. I doubt many are suffering at all, to be honest, apart from suffering from society often excluding them, lending no help, and making the environment hell for us when they could easily not do so.

Whilst those with Down's syndrome may well not be able to cope alone, I still fear a society which can offer so little help and support to their fellow people. Yes, there needs to be support. But the more we buy into the idea that an abortion is the answer, the harder it gets for the rest of the people trying to cope, because people say "well, why didn't you abort your child, eh?" Pressure works both ways.

Society makes it hard for families to cope with a child with a disability. Society makes it hard for those with a disability to manage. Society sets up rules that mean most with a disability live in poverty and don't get the chance of a job and have few accessible rights.

Society determines if we have the right to live or die, because we have a disability. Could it choose to make life liveable for us? Yes. It often chooses not to.

Note it's a sad face, not an angry one.

"One of the big concerns for me is that people who don't have the disability (whichever one) are constantly guessing what quality of life we have. "

Absolutely. My son is very disabled and people assume his quality of life is poor. In fact his quality of life is very good. Very good indeed. It's not some poor second rate version of 'normality'. He gets the chance to experience life- just like I do- only in a different way.

People really struggle to understand this. How can someone be very disabled and yet have a quality of life that is equal to theirs?

As you said - with support (and for my son the ability to access to things he likes) it's easier.

Have you heard of these people Amber? It's funny and makes you think too. Deals ironically with the 'pity' question.

"We R Society pt 1 uk.youtube.com/watch?v=4CTgW0D5YxA"

"part 2 uk.youtube.com/watch?v=kcKwRwU2f4s&feature=related"

Well, my son DOES suffer. And he lives in the world we are in, for better or worse. It doesn't make him suffer any less if I tell him that things shouldn't be like this, that people should be nicer. I agree, Amber, that it should be better. But it's not. And while it isn't, things are harder for parents and children dealing with disabilities. That's not a judgement - it's a fact. And that is something that parents have to consider when having children and some may choose to act on it by choosing not to consider with a pregnancy if they find out that their child has a condition that will make their lives (collectively) harder.

Must say that I wish medical staff would be more balanced and less doom and gloom about DS and other things though. Not sure how many are just given the 'get rid' spiel. People should not always assume they know about a condition just from the media but I doubt many people who've just got what may be bad news from their perspective have time to go off and do much research.

"part 3 uk.youtube.com/watch?v=vVIKaWmTxj8&NR=1"

what angers me the most is - woman want babies get pregnant and then when it is not the 'perfect' picture/outcome desired - one day the baby is very wanted - the next day after a positive diagnosis or even a very high chance factor given - this babe is suddenly a problem to be dealt with or done away.

My 'damaged' daughter attends mainstream school. She has also been attending a mainstream kindergarten as well as a special ed unit.

TBH if we are looking at adults with ds today there are so many who were denied the support and early intervention that my daughter has been able to access - the outcomes for her are so much more positive because parents like me have fought the fight to have our children seen as 'worthy'

As to working - at present I don't do paid work HOWEVER I am a new parent support person for the local down syndrome association and I am the secretary of the P and C association - both of which make demands on me and my family. I had a year off when dd1 was born and then went back to full time secondary school teaching when dd1 was 1 and stayed there until we emigrated when dd1 was almost 2. I have since gone on to have dd2 and dd3 and intend to go back to work doing something other than teaching.

I know a number of parents who have children with down syndrome where both parents work and the children are in daycare or after school care.

(Monkeytrousers, thank you so much for those youtube links - definitely not 'politically correct', but goodness me I laughed at the attempts of the trainer to explain to people that they don't have a disability at all).

"what angers me the most is - woman want babies get pregnant and then when it is not the 'perfect' picture/outcome desired - one day the baby is very wanted - the next day after a positive diagnosis or even a very high chance factor given - this babe is suddenly a problem to be dealt with or done away."

It was for this exact reason that I deliberately took the head in the sand approach and refused all screening - triple test/OSCAR/nuchal fold etc. I am passsionately anti abortion for myself (I don't think it should be made illegal although I would rather the time limit were lower, but for that to work maternity services and access to advice and conselling would have to significantly improve). As an abortion was something I knew I simply could not do regardless, I preferred not to be xposed to the potential knowledge that there might be something "wrong" and that I had choices to make. I preferred to deal with a fait accompli.

I did have the 20 week scan but only because I was a nosy so and so and wanted to see him. If that scan had revealed disabilities, well to me (and I know others strongly disagree with this) there's no difference between my DS in utero at 20 weeks and lying in the bassinet at 40 weeks except time.

i strongly agree with what givemesleeporgive mechocolate has said......i think for many many people the decision to terminate is not a value judgement, but a practical reality.

however i also appreciate what many of the other posters are saying which is that there is A) a negative idea of life with SN child portrayed in MM article, and B)that most conditions/events resulting in disability cannot be detected/predicted. all i can say is that i would take all tests available, as it is the only tests focus on down's at present. and if i had a way of knowing that some horrific accident was going to happen i would try to find out exactly how bad it would be and avoid it IYSWIM.
It's all about drawing a line somewhere - for some, the line is that they want a child and can accept that child whatever needs it may have. for me, the line is that i am reluctant to choose a life where there is increased likelihood that this child will never reach independance/be in constant pain/so forth. i realise this upsets many people but it's my truth. my dd has mild heart probs. had this been detected in utero and the hospital told me there was no way of knowing the level of severity, would i have terminated...who knows? too horrible to contemplate now, but before i had met her...?

just as an aside, i'm really impressed with the general conduct on this thread - it's such an emotive issue but hasn't descended into the usual sort of shitfight we sometimes see on here.