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

fair enough - I get that it's not right to use the words damaged or to treat those with disability negatively. I think maybe I should bow out of this now. Just seemed to be verging on the 'women who do make the choice to abort because of disability are wrong'

sorry.

Oh dear I should not have read this What a load of misinformed rubbish; 'A damaged child is a damaged family' - what actually makes a person damaged anyway? You can be NT and have mental health issues (like me) that affect you and the rest of your family for years and years - how dare people like this presume to be in a position to decide whose life is worth living??

The author is doing a lot of assuming. The Times is a rather right wing paper though so perhaps that is how this article got here.

I actually believe that my life is better because I have my daughter - I see things very differently and I think I'm a better person than I would have been without her.

I also disagree with the author that most women opt to terminate because they know the reality of having a child with DS, and would personally think that it's actually because they don't know the reality and they are scared of a future they hadn't planned for.

SixSpot, you can't compare a loved child who exists with an unborn foetus.

This is the argument used by pro lifers and I detest it.

It is nobody's business but yours whether or not you have tests, and whether or not you think termination is for you.

But I was asked how would I feel if my loved one became disabled, and I hardly need answer that - I'd feel the same as any loving human being would. I'd get on with it and continue loving and caring. They wouldn't be diminished, they'd still be the same person.

But that is not the same as making a choice regarding a foetus that isn't born yet, for me anyway. Many people do not agree with termination and that is their business, but to me, a feotus and a loved family member are not equal. Excuse my spelling.

Problem is the idea that you would terminate a pg if you discovered ds gets perpetuated by the fact many people have never met anyone with ds.

And by the fact these tests are seen as routine and that of course you want the test, and of course you want to find out, and of course you'll risk an amniocentesis, and of course you will terminate.

With both dds I went for a nuchal test, just as a possible indicator. With dd2 you were only supposed to be 'allowed' to have the nuchal if you had the blood test as well. I just told them after the nuchal that I'd decided against the blood test after all.

I knew I wouldn't risk an amniocentesis. I was 43 and had had 5 miscarriages before dd1, no way would I risk possibly my last chance of a child. Plus dh and I had already decided we could not terminate, because of what we'd gone through in the past.

There are so many things, many of them more disabling, that your child may have or develop. The tests almost seem to suggest that if it's all clear your baby will be 'normal' - not so. If you have a child you have to consider if you will love them whatever happens, and in all circumstances.

After I had dd2 I was lucky enough to meet my first ds baby. I offered to hold a bouncing 18 month old boy while his dad sat in the dentist's chair. He was an absolute joy, and he was just like my own toddler. We played and I pointed to things and he looked and we laughed - I never realised it would be so like holding any other baby.

My reasoning during pg had been all hypothetical. But I'm sure if I'd had the chance to meet babies, children, adults with ds, not just as a passer-by but in my everday life the possibility of even considering a termination would seem totally strange. And I hope in a few decades time it will be seen as 'odd' to have the test - for the purpose of termination - rather than 'odd' not to.

"I never realised it would be so like holding any other baby"

Very wise. And this is it. People think that a disabled baby is different. That families somehow feel differently about their disabled baby than they do about their non-disabled children (if I had a £ for every time that assumption has been made clear to me), that the disabled baby is a less valuable version of a 'proper' baby.

In fact the way you feel about a disabled baby is just the same - you're maybe slightly more protective when there's a need to be, but otherwise within the family they're the same and equal to the other children.

I think when people terminate a shild with SN of any kind they are rarely thinking of the baby they will be caring for but the adult they will become and the effect it will have on them.

MorrisZapp, I am not at all a "pro-lifer" and the argument is not about termination, but about whether MM is right to label all families who have a child with a disability as "damaged".

If she is right - and of course she is not right - then it would be completely illogical to look only at "damaged" children as those whose "damage" could have been detected antenatally. Do you see what I mean? That is why so many of us who have children with disabilities are so very incensed at what she is saying.

Sorry - should read 'rarely thinking of JUST the baby'

Oh I agree JJ. People assume we had ds4 to 'make up' for ds3 (that's those who bother to get beyond I was trying for a girl LOL).

We didn't, we always wanted 4 children: we have 4 children. The SN bears no relation to that.

We were discussing this in the morning, dh and I; the assumption that if we had been given 2 NT children first we'd have stopped there- no, not at all. In fact if I had to quatify it (not easy) I'm probably closest to ds3 (and bf ds4 onbiously), for a whole host of reasons unrelated to his sn.

Peachy, presumably in MM's world, people like you and me who chose to have another baby knowing they already had one child on the spectrum have only themselves to blame, and don't deserve any support.

Peachy
when I got pregnant with DD I can't begin to tell you how many people asked about testing and what would we do and suggested that my pregnancy would be just never ending worry that I would have another one like ds2.

People find it so hard to see outside their own preconceived ideas don't they ?

I don't want to concede a millimetre of what we have won as women.

I want more.

On here (mumsnet) we know that parenting costs money and time, and more in cases of sn.

It depresses me that instead of MORE support for all sorts of parenting issues we are offered abortion instead - a private solution.

Yes, I know that there is a limited amount of money in the pot.

But that shouldn't inhibit our chance to imagine and want and ask.

today has been interesting on mn, re. termination. Women are much more complicated than the public pro- or anti- termination stances suggest. In the public sphere, I know that I am far too worried about conceding anything to the anti-abortion people to say anything more complex. But mn is slightly non-public and a space with just more room.

I don't just want my slice of the cake not to be made smaller, I don't want a bigger slice. I want the bakery.

I really do want a world where disabled people/sn/careres can have a full and happy life.

And mm's attitude does not help.

beanie I think thee are majotr and complex reasons a woman would make that decision, my sibling before me was terminayed because of rubella damage: Mum was pretty desperate for a child (well after 4 late miscarriages / stillbirths she would have been) but she had no experience whatsover of coping with a severely disabled child, as that one would certaily have been in the unlikely even he or she had lived: cardiac damage and btain damage.

I however was faced with a baby testing high risk for DS; before ds1 was dx'd so that not a factor. It was the years I spent caring for disabled poelpe that helped me realise I could cope: the experience of knowing them as people rather than stereotyped images of either 'monsters' or hero's' depending on what angle was being presented that day.

I firmly believe that experiece is what makes the difference.

Damaged family? We are still married and in love despite 2 sn diagnoses, losing our home years ago, DH having quite severe mental health problems from time to time etc etc. I watch so many of my friends marriages fall at the first hurdle- and she refers to us as damaged?

Hmm. As someone with Asperger syndrome and a spinal scoliosis, I suspect a genetic test of an individual like me would in future determine that I was 'damaged' and a likely burden to society. I wonder if future 'me's will be allowed to live? Strangely, I'm a married mum running a company, doing advisory work and actually enjoying myself and contributing to society, not being any sort of 'burden' to society whatsoever really, just like many with disabilities. Is it easy for me? No. You don't want to know how many coping strategies I use daily....

But did I want to be dead, on the offchance that it would have been too difficult for me and the others around me? No thanks, if it's all the same to everyone else. I'd quite like to be alive.

Am I saying no woman has a right to choose? No. But it needs to be a reasoned choice, not one based on false ideas.

Down's syndrome is not an easy thing, but what sort of society fails to care for those who need help and would rather 'THEY' weren't there? We need to push for much, much better help, support, info and understanding in society.

Good post Amber.

Society seems increasingly perfectionist (perfection being all about this bizarre image of desirability rather than any relaity or true happiness); yet it seems to work only on snapshots of people here and now.

If society keeps aging though, a great many of these perfect people (I hate that term but hope people know what I mean) will become old and disabled.

Society needs to learn tio integrate disabled people into normality, not force them to the other side of some wierd dividing line. A line many of us wouldn't know which side to fall on anyhow.

I'm pro-choice. I just think if we don't actually meet anyone with sn in real life, how can we make valid choices about these things?

And if we keep 'choosing' not to have people with ds in our society, how do we meet enough people with ds to realise that it's not necessarily a reason not to have a baby?

As an aside - could I ask mothers of those children with SN which are fairly severe... how do you manage to work and look after your child?

97 out of every 100 people will have a disability of some kind by the time they die. That's an interesting fact, isn't it.

I have a job that is very flexible. I can work from home, and whatever hours I want - just have to produce the goods. So ds1 goes off on his school bus, I work, he arrives home I stop work. Having an after school club would make life easier, at would access to holiday care, but I manage.

My work is directly related to his disability. And is the most interesting job I've had.

I don't actually but DS2 is of school age so my issues are exactly the same as any other mum of school age children.

zen- agree completely with your post.

Ds1 doesn't limit my access to choice of work. Lack of childcare for him does.

As it happens I have flexible work I enjoy so lack of childcare doesn't affect me that much at the moment.

'how do you manage to work and look after your child?'

I have 2 sn ids. ds3 is about o go to special school andhas quite marked needs. His former cm adores him, its not an issue at all for her.

ds1 has a milder sn but it has accompanying traits which make him receive more dla (aggression) and mean a cm / nurseery are a no-no (rather after school club)

Right now I am not working as we have a young baby and I graduated last term so am having a year out. My degree was managed fine with creative thinking; dh works nights etc.

Next year either dh will go to Uni and I will work, in which case he will do childcare etc (perfectly possible in our direct exerience) ad his job after will be home based so he will be here for school taxi runs / school pick up etc.

If he doesn't g next year, one of two things will happen:

either I will complete my teacher training and he will work PT (as well as the PT business he already does on top of FT job), or we will both work PT jobs.

Its tooe arly to say due to Uni admissions / etc etc, but i think most hurdles are surmountable, and many Mums are happy at home and a great benefit as a home based carer. I am right now, but know I will need more long term (though more becuase dh has his own health problems and cannot work nights much longer). We shall make it work.