I really need to rant, again, about people and their risk of "having a Down's"

[thomcat]

FUCKKKKKKKKKKKKKKKKKKKKKKK!

Do people suddenly forget that the child inside them is still their child when they are told that their blood tests are 'high risk'. Does the oh so terrible fucking risk suddenly dehumanise them?

Even that word 'risk' is starting to piss me off.

They go from being happily pregnant with their baby, their wonderful son or daughter to be, to being horrified that it could be "a Down's".

And what the fuck is it with saying stuff along the lines of 'oh i was high risk but went on to have a wonderful and healthy baby'.

Fuck you!

My daughter is wonderful and healthy, she also happens to have Down's syndrome.

Aggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

Sorry for proper anger coming through, we can blame it on the hormones if you like but I'm still really cross.

I can make a million excuses for the language and terminology used on 'oh no my baby might be a down's' type threads but kiss my arse today, I don't give a shit, they should think a bit more.

After 24 hours away - I poster yesterday about a hospital chaplain who found it impossible to say 'Of course you did the right thing' after a Downs termination. I was advised he should have found a replacement chaplain. Having thought about it, I would like to feel no hospital chaplain would say those words. Offer comfort, offer help in the way forward, whatever....but not total agreement. (I am in Ireland where there is testing, but no abortion, so perhaps I am coming from a different perspective?) If there was a test for 'potential serial killer' or 'menace to society' would it be so cheerfully offered? I know life is complicated when your child has special needs, and it can make every day a bit harder than it should be.

Although twoisplenty there ARE no tests for Cp / ASd rather than no tests routinely done. they just don't exist- after all CP is often a birth injury.

oh for a test for ASD that could be done when a child becomes symptomatic

Peachy- a community at the SN would be great but most of us don't get that. The schools are so far the majority of the kids are bussed in so I never see another SN parent. Actually, I never see anyone now. All the NT friends buggered off.
It is odd how the test for DS is seen as the be all and end all. No test on earth would have showed that DD would get brain damaged at birth. And while I would never have tested her or part with her, today is a hrd day, one of the hardest ever. She's lying in hospital being injected with powerful steroids to prevent an epilepstic syndrome that we aren't even 100% sure she will get (just the EEG pattern). This morning she no longer knows who I am, her BP is up and requiring more bloody drugs and we have another week to go. Am I torturing my daughter because I am afraid that Lennox Gastaut syndrome will give her hundreds of seizures and cause mental retardation? Am I right to put her through this or am I as full of fear as those who terminate a baby because of DS?

you're doing your absolute best you can, which is all anyone can do.

The two schools ds3 almost got into are quite local so woudl ahve been able to be involved- sadly not to be, blardy LEA.

needmorecoffee, I hope that you get good results. My nephew has Lennox Gastaut and it has taken a terrible toll on him. I know that for most people epilepsy is a controllable condition, and I have adult friends with epilepsy who live pretty much completely normal lives, but my nephew is both disabled and chronically ill, and my neice has autistic type brain damage from a fit when she was tiny (she also has DS). I can understand why DS is tested for, because of the relatively high incidence, the age factor and because the blood tests are relatively inexpensive (in London where I live and work HIV and syphilis are also routinely tested for). I would supsect that if there were tests for other high incidence genetic disabilities/chronic illnesses then they would be tested for too.

Kerrymum and needmorecoffe - interesting and movng posts.

probably a good thing I have not seen the thread - very stressed at the moment - lots of demands on our time as a family ( and me especially) our few days away was not a break and I would probably have lost it and written the post I have always wanted to write iyswim.

But you know I am with you - having a 'down's' pisses me off no end - kinda like having a puppy grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

sorry but you can't blame the NHS - they provide the tests because people want them. How many people do you know blindly test for whatever without thinking of the next step. Well imho More bloody fool you - For goodness sake this is your body, your pregnancy - don't be a freakin sheep - if someone wanted to test you for something would you just blindly let them get on with it or would you find out as much as you could before you let them start.

How about being educated and informed rather than just a stupid muppet following whatever is suggested - so with that reasoning - the NHS provides tests and docs tell you to do them - so you do - are you a lemming ready to jump off the nearest cliff cause someone told you to.

rant over

from a mum who chose to have three daughters - one of whom happens to have ds.... and yes we chose to have a child with down syndrome.

don't pity me, don't think me selfless 9 no way!) don't think me a martyr.....

I AM JUST a mum.

i kno im late on this thread but ive got to say WELLDONE THOMCAT....u know ive thought like you for ages.....the thing is pll think that because their baby 'looks normal' then lifes a picnic. whos to say that the perfect bouncing baby wont suffer with autisum, or a lifechanging mental illness??? ppl are so obsessed with physical perfection.