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

420 replies

emkana · 04/12/2008 22:37

words fail me

OP posts:
SixSpotBurnet · 05/12/2008 14:46

same as pagwatch - DH doesn't work but if he did it would be same as for anyone else with school age children, as DS3 does full school hours now

beanieb · 05/12/2008 14:47

I ask because one of the reasons I would have the tests and then make a decision like having an abortion is that I feel I would be restricted in my work life (I am not some mad power crazed career woman I have a bog standard job I enjoy) if I had a SN child and so if I can have the tests available I will.

PeachyBidsYouNadoligLlawen · 05/12/2008 14:56

Sn varies though and most Sn is not detectable in any test.

Most Sn by far is relatively mild, and doesn't place any real issues in the way of the working Mum.

Those that are severe enough are both rare and ime often undetectable- seious cerebral palsy, for example from birth injury. Severe autism.

Even with severe sn there is often a way round it: a nanny perhaps, or some areas offer sn after school services (not ours. pah)

Not that I am anti-termination, I am anti uninformed termination. there reall is a big difference.

2AdventSevenfoldShoes · 05/12/2008 15:46

beanieb and some of us don't as we have no family to help out, and can't fit a "job" round caring for our disabled child(who has a disability that can't be tested for)

beanieb · 05/12/2008 15:50

no offence meant 2advent.

Just asking because one of the reasons why I would do as much as I could not to deliberately continue a pregnancy when I knew the child would have SN is because I am not willing to sacrifice other areas of my life to be a full time carer.

However, of course if something were to happen during the birth or later which meant I HAD to then I would grit my teeth and get on with it, but if I can have tests to determine certain things then I will have them.

fondant4000 · 05/12/2008 15:52

See, people think that the testing for ds and means they won't have a child with disabilities - or even a child without obvious disabilities but who actually isn't that 'convenient' to your work life.

Nothing is guaranteed when you have children How will you work if your child has any number of (unscreenable) disabilities or hereditary conditions?

2AdventSevenfoldShoes · 05/12/2008 15:53

beanieb sadly though no one can ever be 100% sure a child is going to be nt.
I had no pre warning what so ever.
so the only way you can be 100% sure is to not have kids.

jimjamshaslefttheyurt · 05/12/2008 15:55

beanie- why would you have to though? I work full time - I'm not a full time carer. I have a child who is more disabled than any child with DS that I've met to date (and far harder to find childcare for). If my child had DS childcare probably wouldn't be a problem.

pagwatch · 05/12/2008 15:55

My DS2 was perfectly healthy and NT until 18 momths old.
Also a condition for which there is not screening.

Lulumama · 05/12/2008 16:00

testing does not mean you get a 100 % accurate result though... low risk is not the same as no risk. ante natal testing is not failsafe

beanieb · 05/12/2008 16:00

jimjamshaslefttheyurt - do you pay any childcare costs? Are they higher than average?

jimjamshaslefttheyurt · 05/12/2008 16:04

Not at the moment because I break my day to look after ds1 between school and bed (when I work again for an hour or so). Ds1 probably goes to bed earlier than most 9 year olds though (about 7.30pm).

We receive direct payments from social services in lieu of direct services, and so I haven't paid any out of pocket childcare costs (actually for any of the boys- as I'm allowed to use my direct payments to pay for ds2 and ds3's after school club) for years now.

DS1 has cost us more in other ways (a lot more) but that's our choice.

wannaBe · 05/12/2008 16:07

"because I am not willing to sacrifice other areas of my life to be a full time carer." But Beanie no-one said that having a disabled child meant becoming a full time carer. Children with disabilities do go to school after all - the same as nt children do.

Having children means making sacrifices. Even having nt children means making sacrifices.

But there are certainly many parents of severely disabled children who do hold down jobs and lead normal lives.

Similarly there are parents of nt children who have sacrificed their careers in order to bring up their children and who feel that returning to work is difficult even when children go to school.

PeachyBidsYouNadoligLlawen · 05/12/2008 16:07

The Cm who cares for harry had him pre - dx (he regressed around 3) and never chargesd any extra for him despite spending time with speech therapists etc on his behalf. She has agreed (and is excited) to have him back next school year and to have (NT as far as we know) ds4 too; we are thrilled about that.

failing that the obvious choice would be a Nanny and although we no doubt have to pay extra I still think n balance it would be less than individual arrangements for four children iyswim.

wannaBe · 05/12/2008 16:10

sorry that was badly worded - I of course didn't mean to imply that parents of severely disabled children who don't work don't lead normal lives too but ykwim?

amber32002 · 05/12/2008 16:17

General info:

If we take the figures from the charities, I believe these are the approximate odds of your child being born with/growing up to have these disabilities:

Hearing 15 out of any average 100 people
Dyslexia 5 out of 100 (some say more...)
Sight 3 out of 100
Learning 2 or 3 out of 100
Dyspraxia 2 out of 100
ADHD 2 out of 100
Speech 2 out of 100
Mental Illness 2 out of 100
Wheelchair users generally, 1 out of 100
Autism/ASD 1 out of 100
Epilepsy 1 out of 100
Cerebral Palsy 1 in 500
Multiple Sclerosis 1 in 1000
Down's Syndrome 1 in 1000

And most are people you already share everyday life with, living good lives. Not all, but most.

They reckon it averages out to about 1 in every 7 people. And most of these are things you can't test for, to my knowledge.

PeachyBidsYouNadoligLlawen · 05/12/2008 16:23

And its impossible as well to knw what effects any disability bar a very eect few will have on your life or your childs.

CP- can be very mild indeed to devastating, quadriplegic (and even then there is great quality of life and lots of love as we know from NMC)

ASD- Amber functions so well and has a very full life; others are not so lucky.

Mental Illness- Many people live life quite successfully coping with low evel derperession; the same disorder has threatened my DH's life in the past a few times on and off since his teens

Life will throw curve balls at all of us. Accept that and you ewill find fulfilling solution without feeling you have been ripped off (although admittedly I feel my kids have been, to soem extent at elast). Dodge all the curve balls and life is ver one dimensional.

beanieb · 05/12/2008 16:31

But it is possible to know if the child you are carrying is at a high risk of having downs Syndrome or if it will have Down syndrome.

I know there's loads of stuff I can't have tests for, and loads of stuff that may happen - but the point is that the tests are available for Downs Syndrome and people will make the choice to terminate once they have had the tests.

PeachyBidsYouNadoligLlawen · 05/12/2008 16:38

It's not possible to know if your child has definitely got DS without risking a test that can put their life in danger... there are some scary stats around that give the number of NT babies lost to Amnio compared to those with DS. That alone is too much of a tragedy for me to have considered.

For me. I wouldn't dream of telling anyone else what to do; for me definitely though.

PeachyBidsYouNadoligLlawen · 05/12/2008 16:39

also:

but the point is that the tests are available for Downs Syndrome and people will make the choice to terminate once they have had the tests.

SOME people.

When confronted with the posibility, DH and I ran away from the hospital. Fast so we couldn't be placed under any more pressure.

amber32002 · 05/12/2008 16:42

Peachy, to be honest, I function pretty poorly in a lot of things, but I've learned to rely on my strengths and ask for help with other things...but to also offer my strengths to others so it's a shared experience, not a burden, if that makes sense? I can't swim, I can't ride a bike without falling off, I can't read music, I can't do crosswords, I can't tell if someone's dangerous or not, I can't go to a party and work out what to say or do, I can't see body language or recognise people. Yet instead of sitting about and thinking "Oh how tragic", I just worked out what things I can indeed do, and do those instead.

Wisest thing I ever heard was the story of someone who'd visited a nun living in a contemplative nunnery, who sat in her room almost all day, just in silence. He wanted to know why she'd wasted her life doing nothing when she could be on such a journey into the outside world, being someone, doing something, being important, earning all that cash. She replied that, to God, she was someone important no matter where she was and no matter what she did or did not do. For her, just 'being' in communion with God and offering prayer to the world was all the journey she needed, all the 'cash' and job satisfaction she needed in her life.

We judge so much on perfection, on money, on how beautiful and how talented and how fast and how sporting people are, but ultimately maybe it doesn't matter a bean. What matters is what's inside our hearts, and those with a disability are as lovely as everyone else.

PeachyBidsYouNadoligLlawen · 05/12/2008 16:44

Sorry Amber: didn't mean to dismiss the battles you have, but to say that yo seem to do so well and have achieved very much in 'conventional' terms, iyswim?

Aitch · 05/12/2008 17:18

ASTOUNDING that she was on an ethics committee. really grim.

amber32002 · 05/12/2008 17:19

Peachy, don't worry - I hadn't taken offense, I was just explaining a bit more?

daisy5678 · 05/12/2008 17:24

I agree that people should have the right to choose. Pretty much what beanieb seemed to be staying, unless I've misunderstood.