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

There are a few points in India's reply that really bother me:

"Marrin?s postbag was as full of people agreeing with her as not ? ?Well done Minette,? wrote one. ?I am a retired teacher with over 40 years? experience teaching children and adults with multiple handicaps including Down?s syndrome . . . [You] said what needed saying? ? but the experience of many of her correspondents was decades old, which is to say, redolent of a culture in which ?mongoloids? were invisible and disability was synonymous with shame."

• Again, with the discrediting of people on the opposite side of the argument. Neither my husband or I are yet 30. ALL of our professional experience with LDs and Brain injury has been in the last decade

"Marrin wrote of a relative (she didn?t say who) who was disabled (she didn?t say how) in her article, and referred elliptically to her own experience, which was clearly unhappy. Move on, love. My dad didn?t get on with his sister; it doesn?t mean that he went around advising people to abort girl children."

• india's positive experiences are valid and press worthy - Marrins negative experiences are not?

I am all for india knight promoting the pros. What upsets me is that she seems to be setting out to discredit all the people who are on the con side

I watched the press coverage about the increase in babies with Downs syndrome being born with interest. Here is what I observed:
the facts were stated - then followed by a story about a family who had a baby with down's syndrome and are very happy. All the people interviewed were the ones who were against terminating based on antinatal results. It was so one sided.

I feel that the word love is used in a very aggressive, nasty way by some people on india's side of the discussion. I would love my unborn baby AND terminate if it was disabled, in the full knowledge that I would have loved it had it lived. I loved someone who had a brain injury, I would love them as long as they lived in any state, but out of love I begged the medics to withdraw care rather than commit them to a life of bed bound dependence.

I know I am about to be shot down in flames from all sides but here goes ........ my dd has cp and I adore her more than you can imagine, but the day we realised there was a problem our lives as we know it ended and what is left is shattered. I agree that a "damaged" baby is a "damaged" family and I don't agree with mums of SN children who take the high ground and say look at my wonderful child - how dare you suggest she isn't perfect and I should have aborted her?

My child isn't perfect, she is disabled and disadvantaged and always will be. If I could have predicted her disability then of course I would have had an abortion.

Why would I knowingly bring into the world someone who has to have physio everyday whilst her peers are out playing?

Why bring her into the world knowing that everyday when she is out people will stare at her and sometimes even say things to me about her?

Why bring her into the world knowing that she will always need some degree of support and never be able to live independently - and we all know how shit the support is out there?

Why bring her into the world knowing that she will have to sit and watch her friends do things she can't ever join in with?

She starts school in January and we are currently troubled with recruiting a total fucking stranger who will be trained to wipe her bum for her - she's only 4.5 and is already self-conscious because she knows that other big girls don't need that sort of help.

And that is just the first few things i can think of - every day is increasingly full of problems and sadness and disappointments for her which i try my damnedest to mitigate but i can't always do everything although I will keep trying as much as I can.

I am not even starting on the issue of how this affects me or dh or ds's twin, although if you want to know, the effect is all encompassing and devastating on many levels.

I am asking you to look at it from the point of view of the child. As mums we always do our very best for our children, so i do not understand why you would start a child off knowing they have such a huge disadvantage to overcome or try and overcome.

Those of you who have knowingly carried on with a pregnancy knowing that your child will have a disability ( and yes there is a wide spectrum involved here so I know it is hard to generalise )... I genuinely do not understand your decision.

My son is very severely disabled, but also very happy.

I cannot apologise for that.

Yes his condition makes our day to day life harder, but it has also brought a lot.

I can't apologise for that either.

I fully expect him to have a life that is as worthwhile and happy as his brothers. Yes there is some shite adult care out there, but that is changing, I know of several places where the provision is excellent (a decent wage and training seems to be the key- so more expensive- social services should be encouraged not to make it a battle to actually get the funding for those places.

emkana, have looked at your profile and he's gorgeous. Beautiful little boy.

which would i rather have - a disabled child who's a good person, or a git-for-brains like Minette?

no contest.

jimjams I don't expect anyone to apologise for anything and I am pleased that your lo is very happy - but what exactly has his severe disability brought to your life - you say that as though it is a positive thing? How can that be so? And how can you honestly say that you expect him to have a life as worthwile and happy as his brothers? How is that possible?

I am not trying to be offensive or argumentative but i just do not understand where you and other mums are coming from.

i'm neurotypical. my life has been blighted by substance abuse, depression and addiction.

but somehow the idea is that people with disabilities won't be as happy or productive?

LOL.

Flocci- Last christmas I sat on Dartmoor with him (my favourite place in the world). We were in the middle of nowhere- I LOVE that- really love it. And I looked at him and he was enjoying the moment every bit as much as me. And I realised then that life is just about experiences. Now he's never going to be able to do some of the things I've loved (like living in Japan) but tbh there's nothing I like more, that makes me feel more alive than something like sitting in the middle of a wilderness -and he can do that so why would I see his life as having any less value than mine? (with a different disability it would be a different experience he could access- like a gig for example, something else I love).

Anyway it changed my view of his life dramatically. He can experience things just like me, so who would I be to suggest that his has any less value than mine or his brothers (one of whom won't set foot on Dartmoor btw as he's an indoor boy).

Since then I've gone out of my way to make sure he gets the experiences he likes. So he's been climbing and surfing, we bought him a karaoke set for his birthday and he belts along with that - we put on music loud at home and everyone kind of dances around to it.

His special school provides an experience rich education. He goes out a lot, he goes donkey riding and swimming etc. The adult care I hope he ends up in will provide an outdoor life and climbing and dancing and hopefully horseriding.

What's it brought to my life? Fascination. I love severely autistic kids & learning disabled kids and through him I've met so many. I love being around these kids because they make me laugh. The surf event we went on was fantastic because the beach was full of kids with LD's. It made it better - it produces a slightly crazy/barking mad atmosphere that you never get in groups of only NT kids. The way that ds1 deals with the world and the way he thinks (without language) blows my mind, and often has me (all of us) laughing at the sheer madness of it.

And of course my job. I wouldn't be doing what I'm doing now (something I love) without ds1.

I haven't always felt like this. When he was younger there was a constant push to try and get him speech say before it was too late. When he reached 7 and was still non-verbal it became easier to let that go. And probably it became easier to accept his life. Also having him in a good SLD/PMLD school has made life a lot easier and happier for all of us. Far easier than when he was in mainstream.

I can't see anyone as damaged in our family. DS2 and DS3 are thriving, happy at school, quite happy with ds1. They talk about him in positive terms and they seem relaxed around disability. DS1 is happy. Both dh and I work.

And I do think that ds1 has given us a perspective that makes it easier to be happy and count our blessings.

I wonder what she would have made of an acquaintance of mine who has adotped two children both with Downs Syndrome. As a single person she took the view that she would rather have a child with downs syndrome from a very young age than a much older child with no perceived disabilities with teh high risk of behavioural problmes attchement and bonding issues etc.

I think for me actually the turning point was teaching ds1 to understand 'walk at my speed' (when he was 8) as then we became able to do a whole lot more (such as the moor walking). .

Really simple little things like that can make a huge difference to a family's outlook and opportunities.

Of course we had to buy in the help from the States to teach that simple command.... .

kewcumber- a friend of mind adopted a child with SN as well- and it's been very successful.

Its early days yet JimJams - Eldest is still only four and newest about a year, I met them both last week and she is struggling with two but mostly becasue she has a boisterous four year old and trying to cope with a new baby.

I did understand her decision though - she wanted to be a parent, she wanted to nurture and teach, the same reason I became a parent really.

JJ got to dash - both dt's poorly. Would love to come back to this - i thought your posts were lovely.

I agree with getting enjoyment from experiences. DS2 went horseriding today (RDA) and the look on his face was pure, pure pleasure. It made me cry.

He may or may not lead an independant life but I totally see him as having a fulfilling life.

Flocci, I hope you are back soon and that the children are feeling better.

Flocci- it took me a while to get to this stage. Remember ds1 is 9. At 4 I was obsessed with thinking he had to be talking by 5 (or it would be too late) - then when he didn't the world didn't end iyswim. And when he was 4 I constantly compared him to 'normal'. It's so much easier not to do that nw.

He really is happy, and the other boys have been able to do their own thing as well, so they're not limited in any way by having a disabled brother. They miss out on foreign holidays, but that's about it really (and they don't know because they've never been!).

When I look at what ds1 has brought to our family - 9 years after his birth (and that's important I think- age 3-5 was hard) it's really a case that he's brought more positives than negatives.

Now one negative arrived in the post yesterday (DLA renewal form!)

Flocci - hope they're better soon too.

We've been passing coughs and colds around in this house for weeks now.

Our baby was wanted - why would we discard her because she happened to have down syndrome and a heart defect?

Sorry I've come late to this thread- had to nip upstairs and shoot dd first!

Never mind about the risk of not having a great sex life or not being perceived as beautiful in our body-fixated world, dd turned out (after birth) to have a condition that means she is likely to be in pain every day of her life. I don't for a moment suppose this is a life Minette Marin would want to live, so I clearly had to take action.

If you'll excuse me, I'll just go and wash the gore off the sheets.

jimjams - it's very interesting what you say about time.
I represented a family who has SS breathing down their nneck because the Mother had verbalised her view that it would have been better if her son had died at birth.
I think they thought she would try to harm him.
Then I had an interview with a fabulous consultant at Great Osmond Street who explained that it was very natiral for parents of disabled kids to feel that way for quite some time. That they were grieving. That they weren't able to see the positives.
I'm pretty sure that her evidence was instumental in that child being allowed to stay at home.
I do think however that parents of disabled kids should be told that it's perfectly normal to feel that way. That as they say, all things must pass.

Flocci my dd is 13 and has severe cp.
she is my light and best freind.
hopefully one day you will be able to say that.
as for support being shit,
I have to disagree, I have had so much support from dd's sn school, in fact sometime too much.

"I do think however that parents of disabled kids should be told that it's perfectly normal to feel that way. That as they say, all things must pass."

Absolutely. I am very lucky that I have a very good friend with a dc similar to ds1. We can phone each other immediately we have a difficult moment and the other 'gets it'. I'm sure she has kept me sane and it means I've never felt isolated.

Flocci I answered you first post and then saw your second.
offensive to put it mildy.
I could tell you all a bout my dd and what she brings to my life and her dads and brothers. but I think your mind is made up.

I think jimjams point was that it's early days for FLOCI and that she hasn't yet had to the time to get through her grieving.

About amnio- this may have changed since I had ds 8 years ago, but my experience then was that someone above 35 was expected to have the amnio without even being asked about their views of abortion, it was just something the NHS offered that you ought to take advantage of. I actually had to argue quite forcefully to get the midwife see my position- and I was only 36 so must have been fairly low risk. I was made to feel irresponsible; yet noone spelled out to me what I was supposed to do with the test results. All my friends had it and some I would think (knowing their religious views) were definitely anti-abortion.

Litchick I do understand that, have been there myself. but never not wanted my dd.