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

trouble is imo people like MM cherry pick stuff from other peoples lives, snapshots that have no true relation to the whole picture.
then (like a lot of people on this thread) steal these snapshots and use them to back up their arguments.
My dd is not damaged, my family is not damaged.
but people with atitudes like MM are damaged and sad imo.
(good posts JJ, Wannabe and NMC)

TBH I think I would have been more damaged growing up in a household with a mother spouting MM views (her website really is an eye opener on all sorts of issues- I genuinely didn't realise people like her still existed), than my younger 2 boys could ever be growing up with ds1 as a brother.

There's now more research showing the positive such as this and this. I've realised reading the second link that we already do most of the suggestions (very easily) and it seems to be working as ds2 and ds3 both seem pretty happy with their lot (they fight more with each other than with ds1 tbh).

Like any sibling relationship it's going to be a mixed bag. I honestly think that providing as a parent you ensure the siblings get some 'normal' family time (for example last week ds1 went to respite on Sunday so we went to soft play and pizza hut with the other 2), and they still get to do their own thing it's be fine. Or as fine as any sibling relationship is likely to be.

Try being one of the people who's not supposed to be alive because they're supposedly 'damaged goods that damage families', then see how cheery you feel . Gee whizz.

Still, it's better than the debate on another board where some cheerful soul suggested we should be shot, I guess. Yup, people do suggest it.

Have caught up on all of this and still don't feel that anything has changed my initial viewpoint.

Clearly this is bordering on the pro / anti abortion debate which means that many people are just never going to understand each other's POV on this.

But if you can get over that, I still cannot accept any of you telling me that it is a good decision to knowingly bring a child into the world knowing that they will have such pain and problems ahead.

There have been some beautiful posts about your lovely children, and i could chip in with lots of my own - dd is an absolute star and most of our days are very happy and bright. BUT there is not a single day that goes by when there isn't some great sadness or pain because of her disability.

This isn't about me grieving or coming to terms with things, because this isn't about my happiness ... it's about a little girl who is frequently in pain and unhappy. My life is about making both the twins' lives great and happy, and yes, ds who isn't SN also has problems and unhappiness that are out of my control, as do all children, but dd's problems are nearly all due to her disability.

As an individual she enriches my life, but that is not because she has SN it is because she is a great little girl - her SN only has a negative impact on her life and inevitably on the whole family.

can I ask what she has? Just wondering what impairment causes daily pain? Does she have juvenile arthritis? Thats undetectable before birth.

She has CP which is also undetectable before birth, so i was never in a position to make such a choice.

In fact I refused all tests when pg as I thought I would never consider terminating a pregnancy because a child had a disability ....... file that under the category of those who don't have a child with SN not having a clue what they are talking about....

you need some pain management then. dd 2has severe quadraplegic cerebral palsy. She cannot sit, roll, use her hands, walk, talk etc etc. She's not in any pain (well, except now cos she's just had a feeding tube put in)
She was also brain damaged at birth.
How old is your dd? Its taken me 4 years to see the positives (and yep, I thought those who talked about positives were all in-denial idiots). We've been through hospitalisations, epilepsy, injected steroid treatments, botox, dental decay.
But dd is a happy girl. She's like any other 4 year old. The stiffness is managed with L-dopa, any sore muscles with nurofen.
I consider her a wonderful addition to my life and yes, while I would cure her of CP in a heartbeat I don't think her life will be any less happy than her siblings - in fact dd1 was much more miserable at 4 than dd2 is. I'm sure there will be teenage tantrums when she 'hates me cos of her CP' but dd1 has said the samer thing and has been miserable or unahappy.
I've met lots of older kids and adults with CP and as a group they aren't more or less happy than any other group or in more or less pain.

I hope you are right NMC but this just sounds bonkers to me. life is just a constant round of Why can't I get a scooter like x? Why can't I play chase? I wish I could xxxx and so on. She is 4.5 and so aware of what she can't do, and it is only going to get worse when she starts ms school in January.

At her little local preschool she has been blessed with a fabulous ISA who got her involved in everything one way or another but it has been made clear to me that at school things won't be like that because they have H&S bollocks and there will be another ISA and there will be things that she will be excluded from, and situations where she will be clearly disadvantaged, so for now I only see things getting worse.

Not to mention that she will now have another 70 "normal" children to compare herself to.

So do some of you think that a woman who chooses to have a termination at 16 weeks after, say, being raped, is a murderer? Do you think that her choice is morally the same as if she shot dead a child as it slept?

she can talk?
Yeah, our life is full of struggles about wheelchairs - dd is too disabled to be allowed a powerchair, fighting for a VOCA - she has no speech, getting her into mainstream.
To be honest I reckon you are projecting your fears onto her. I'm a wheelchair user myself and don't feel jealous of walkers. why would I? Why would your dd? Do non-disabled fret over not being able to run the 4 min mile or climb everest like top atheletes? no they don't.
And the school may not exclude her from anything. Its against the law!
My dd is at mainstream too.

Flocci, do you know any adults with severe cerebral palsy? Maybe talk to them. Might help with anticipating any questions your dd has or undertsanding what she might feel jealous of. ASnd all kids feel jealous of other kids, wthere its walking or blond hair or being allowed out late at disco's.

NMC good point about all kids feeling jealous about other kids - ds is just as bad. But when he says he wishes blahblah I always have a strong answer. When dd asks me why she can't run like th others what proper answer is there?

It may be against the law to exclude her as such but it is not as simple as that. For example, dd uses a walking frame for very short distances. When we go out anywhere for the day we always take it so that although she will be in her wheelchair most of the time she will get the chance to stretch her legs at some point. The school have made it clear that her ISA will be busy pushing her wheelchair and it is not safe for her to balance the walker on the back the way we parents do, and there won;t be another bod to carry it around so that won't be possible. It's just a small example maybe but it is the principle that at some point on a daytrip she will want to get up and walk and she won;t be able to.

Equally she does all kinds of physical stuff at preschool because her ISA and other staff will lift her if needed, but we have been told tat some of the physical stuff at school will not be possible for her because there will be no lift in allowed at all.

i don't know any adulats with CP in fact I don't know any adults with any disability so i guess I don't have any positive examples to make me feel things aren't so bleak.

Devoutsceptic, it's not an argument to have here, it isn't fair to the parents on this thread who are already upset about MM.

Is that choice the same? Not the same, but it's wrong, yes. Sometimes people need to do things that are objectively wrong and I defend their right to do that. I'm not campaigning for a ban on abortion.

I wouldn't have an abortion in those circumstances, I really don't believe I would. You should be aware that there have been MNers in that position who have kept their children so please be careful advancing that argument too far as a point in your favour.

Actually, people are already having that argument and are accusing people who have had terminations of being the same as child-murderers. I would like to point out that there will be plenty of people on this site who have terminations, and I find the glib assertion that a termination is the same as shooting a child with a shotgun as it sleeps, really offensive.
I have never had a termination personally, and have a child with a disability. I do not agree with MM, but that does not stop me finding some of the stuff on this thread horrendous.

And the idea that having a termination for rape, for example, is 'objectively wrong' is just your opinion, and I think a very mean and intolerant one.

they need a hoist for when they can't lift her. demand one.
I know lots of adults with CP and we have talked about childhood and yes, most went through a 'jealous' phase. But so do most children as I said.
Not knowing disabled adults I think is a big thing in forming attitudes to disability. I'm involved with local disability rights groups and am disabled myself. My life isn't tragic or full of jealousy and I don't gaze longingly at the non-disableds. I fairly often think 'ner, I have my own seat'. Course I have off days and get fustrated over stupid disablist things. But doesn't everyone have off days? I spent the day having to ram open double doors at the hospital cos there's no magic opening button and the doors are too heavy for me to open from my chair. I did get cross and I complained cos dd doesn't have any arm movement at all .Hopefully they'll get it sorted before she grows up.
I don't know any disabled adults who agonise over non-disableds and sit around thinking 'if only'. But then I do hang out with some very strong and positive people. And we do everyday things.
No reason why your dd shouldn't do everything anyone else does. She can speak which is a massive advantage. And use her arms/hands. From where my dd is stood (or, sat) she's got major advantages plus her own seat wherever she is.
I'm not trying to be flippant but your dd will not have your attitude. CP is all she has never known. I doubt she sees her life as a tragedy beyond what any child whinges about. Just teach her she can do anything she wants with the right support/equipment. My friends ds has quad CP and can't walk or talk or use any limbs. He's 12 and goes sailing, communicates with a letterboard and won a place at a private school.

I know it is just my opinion, God knows I've been shot down for it enough times on MN. You being the latest to have a go at me really isn't going to make any difference to my opinion.

You do know that it is just your opinion that it isn't wrong, don't you?

Not just my opinion actually. It's the law. And it's the law almost everywhere on earth, except in some of the nastiest places in the world. How you have the nerve to suggest I might be upsetting people when you are calling people murderers I have no idea!

"So do some of you think that a woman who chooses to have a termination at 16 weeks after, say, being raped, is a murderer? Do you think that her choice is morally the same as if she shot dead a child as it slept? "

I don't think that, no. But neither do I think that aborting a child because it is disabled, in the vast majority of cases without knowing a thing in advance about the quality of life that child will have, is an extraordinary thing and very, very difficult for me as a person with a disability. That's my stance. I think we deserve a chance to speak for ourselves.

The law says it is legal. I didn't say it shouldn't be. I said it is wrong. Lots of things are wrong (in some people's opinions) but legal.

Really not going any further on this with you here and now.

I didn't actually call anyone a murderer. I said to me there is no difference between a 20 week fetus in utero and a newborn child except time. To the law, that period of time makes a difference in legal status. To me it doesn't. I am aware that the law and most people, do not agree with me.

No I don't G. I wholeheartedly believe that access to early abortion on demand is one of the moral and ethical cornerstones of any society - if what one is trying to do is lessen human suffering.

Women have been forced by circumstance to abort fetus's since the beginning of our species, be it to ensure any current offspring survive to adulthood, or ensure that she will survive to protect her current children. It's always been a Hobson's Choice. I am a humanitarian above and beyond anything else. That is why I believe in abortion.

No, technically you didn't call anyone a murderer, but you did say that the idea that abortion is not murder is 'just an opinion' - one you clearly disagree with. So please don't suggest that I am the one who raised this subject.
I know several women who have had terminations, and they aren't murderers.

"the vast majority of cases without knowing a thing in advance about the quality of life that child will have"

I'm sorry but that has the whiff of empty rhetotric to me.

What do you base this assuption on? What "vast majority"? Are you saying a majority of potential parents think little about the consequenmces fo their actions before having a termination or not - because I suspect otherwise?

I think this is muddying the waters a bit.

I think that someone who is disabled herself is well within her rights to say that she finds selective termination for disability equivalent to murder. That's her response to the way society in general views disability.

And of course you can be pro choice (I am) and still raise your eyebrows at the time limit for abortion for disability (at term- there my eyebrows raised) and feel uncomfortable about termination for a disability compatible with a long pretty healthy life (I do).

It is possible to have grey areas.

flocci, you said: "dd is an absolute star and most of our days are very happy and bright." And yet you still see your dd's life as a tradgedy and say that you would have terminated her life had you known she was going to be born disabled. I find that so incredibly sad.

You said that she notices that she is different. Tbh I think that children only really notice their differences if they are made to feel different iyswim. I am disabled (blind since birth), and although I was always aware that I couldn't see compared to my peers, that was just who I was. I'd never known any different so it didn't matter to me, and still doesn't.

And my life is no less valued than someone who can see. I am independent (fiercely so), I am married and have a 6 year old son, I have held down several jobs including one as a manager (before ds was born - am now a sahm), I help out at school, have just been elected chair of governors and am on the PTA, plus I go in regularly to help out children with reading. The only thing I don't do is drive a car (for obvious reasons), but my disability has never held me back.

There are many people out there with cp who are living totally normal lives. Just look at our paralympians - so many of them have cp, and so many of them have achieved so much more than you or I will. Do you think they see their lives as a tradgedy?

If you weren't fighting the system to get the support your dd needed, and everything she needed was just available, would you still see her life as a tradgedy? Would you still see your family as being damaged? Please think about that, because it is not the disability that is the tradgedy and causing the "damage", it is the stress you are being put under by those who are putting the barriers in your dd's way.

It is possible to see the positives above the negatives. Yes of course there will be negative days, but when all's said and done, you really don't wish your dd wasn't here do you?