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.

[mimi03]

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.

[eidsvold]

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.

[eidsvold]

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

[Davros]

Kerrymum and needmorecoffe - interesting and movng posts.

[nooka]

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.

[Peachy]

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]

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?

[Peachy]

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

[stleger]

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.

[twoisplenty]

I have two children!!!

[twoisplenty]

But why test for DS at all? There are no tests routinely done for other genetic problems, no tests for ASD or ADHD or CP etc etc etc...so why test for DS?

Why do parents-to-be have the DS all-clear and breathe a sigh of relief, saying thank goodness my child will be healthy? That's ludicrous because that's not true is it? A baby could be born with any number of genetic problems or brain damage. I have to dc and never considered testing because of these reasons...and my firstborn was brain damaaged at birth and has CP, and my second had terrible eczema as a baby and food intolerances. But you can't test for these things! But, like everyone here, I am SO PROUD of my children!

So why test for DS?

[theheadgirl]

Hope you're feeling ok Thomcat - many of us on here know exactly where you're coming from. Aside from all the patronising smuggery inherent in the suggestion that they've "escaped" having "a downs", don't you just HATE the phrase "a downs".

I don't have a downs, I have 3 daughters, one who has downs syndrome. And I'd rather have her than some nasty kid with the requesite number of chromosomes.

[potoroo]

I guess that's what I don't understand - what is so scary about having a child with DS? But perhaps that is because I grew up with children with all sorts of SN (including DS and spina bifida). I suppose I identify DS and spina bifida with the children who I grew up with.

[potoroo]

Hi TC, I was thinking about this thread a lot last night and I just wanted to put in a message of support and understanding.

I don't have a child with SN (so I hope its OK if post here) but honestly never made the connection between testing for DS and termination. I once (pre-children) said to someone that I probably wouldn't get testing done because I didn't care about the outcome and was quite shocked by their response. I have since learnt not to voice my opinion on this subject - to friends or family. So I hope you don't think that just because some people on the AN threads have this attitude does not mean that the rest of us do.

BTW - I think you and I are due on the same day and I had a complete meltdown at DH something trivial he said about a TV program last night, so you are well within your rights to get angry about something so much more important.

I get annoyed with people who ask me if I would prefer a girl this time when DS is standing next to me.

[Davros]

Hi TC, despite what I have written about ante-natal testing on here before, I DO understand what you are saying and truly sympathise. I feel that it is different as I am talking from the perspective of someone who knows what its all about and I'm talking on here to others who do as well and I can be honest. I really think that I would never have had that attitude you describe or have been so bloody insensitive (that's the polite word) before I had DS. I didn't have testing with him, although I was 35, because I didn't want to. Although it is much harder with a child with SN I completely identify with the feelings of anger and distress when other people react as if your child, and any others like them, should be hidden away and not allowed to upset anyone! I was brought up to respect people, especially those with any differences, I think we were ahead of our time but I thought a lot more people these days had developed tolerant attitudes. For my sins I belong to something called the Challenging Behaviour Network and have just been reading posts from people whose children get spat at, laughed at and videod on mobile phones when out in public. I didn't know people could be so vile. I am sure that no-one on MN would ever be like that, but it doesn't seem to be uncommon and I am shocked.
I hope it felt good to say what you actually think and feel on here rather than having to be careful, why should you be when others are not????

[Peachy]

I think one of the saddest things is that because the tests focus on Downs, poeple feel they base theitr decisions on that- there's no way I am testing because well, the lowest risk factor I've been given for ASD is 1/20 so what's the point? BUT i'd have liked to test for Edwards etc, if this was dc1 I'd have not considered a termination for that, but I would now, because although i'd desperately want that child for the few months it might live, I know i'd have to sacrifice a lot of things the other ds's need- therapy, etc. Which will probably upset some people- sorry! (genuine sorry). the rpessure from the NHS to terminate if you don't want (and Dh says I would never do it when it came down to it) is nasty

[expatinscotland]

I've only read the OP.

I couldn't agree more, thom.

I see where you are coming from. I don't even read those threads, because I find them hurtful even to me, like somehow my beautiful daughter is something less than because she's not a brainiac.

My child's special needs could not have been picked up by any antenatal test.

And some on here have children with SN sustained during childbirth.

There are no guarantees in life.

[Peachy]

Thanks Blossom for the info. I worked out today that (and part of this is I have been all but bedridden- sofa ridden, absically- for 6 weeks with this horrid illness) that I ahevn't spoken face to face with anyone who wasn't close family or a therapist since May. . No wonder it gets lonely!

[Blossomhill]

I think it's down to personal choice tbh I know so many children with AS and they are all completely different. People make assumptions and that's the bit I hate tbh

[bullet123]

Sorry, "I do not" should read "I do know".

[bullet123]

Speaking as someone who is Aspergers and believes it is an integral (but not the entire part of her), I prefer to be referred to in the sense of "I'm ASpergers/an Aspie, because it affects the way I think, learn, memorise and perceive things as much as it effects my communication, my motor control and my sensoy experiences. However, I do not that there are adults and parents of children on the spectrum who prefer person first terminology and I would always respect their right to say that they wished to be known, or wished their children to be known, as "a person with ...".

[FlameBatfink]

The parenting a child with AS book says that her AS son prefers "AS son" to "son with AS"

[aloha]

If ds grows up and wants to be an Aspie activist, I think I'd be very proud! HOnestly.
I've never heard it used as a sinister label. It's like gay pride, or black power to me.

[aloha]

Blossomhill, the only time I have ever heard the term Aspie used is by people with Aspergers themselves. www.aspie.com is a site created and run by a woman with Aspergers, www.aspievillage.co.uk is a site by and for people with Aspergers - there's also aspiefriends, aspievision. I don't think of it as remotely derogatory - it's like gay people calling themselves gay people as opposed to people with gayness. I do think Aspergers runs through people like wine through water. You cannot separate it out.
I can understand anyone not wanting a child with an ASD. It's hard work. I do think the world would be a worse place without the ASD viewpoint and particular genius, and I love my son a million times more than I love myself and would die for him in a single heartbeat, but I personally would not actively want another Aspergers child. Would I abort one? Probably not, but I have an absolute horror of abortion, not for other people, but for myself.