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.

[minorityrules]

To me my daughter is perfect in the sense I love her just as much the way she is

But physically and mentally she isn't, and I have to watch her age 13, in a mainstream setting so obviously different from her peers. In maistream as the mild/moderate schools are all being shut

She isn't able to go to the cinema and town like her peers. She is vunerable and unsteady and goes with her carer, and sits watching children living a life she would like but not equiped to have

And regarding other families, I now work in this field (in support, a carer change thanks to my daughter) and I see parents worn down by the battles they face, dealing with the evil that is the LEA, fighting for seating, living on no or very little sleep, getting no help or respite and being told deal with it, seeing children in AFOs getting sores thanks to not getting appointments intime, seeing children in terrible seating cos the NHS only give out cheap stuff, non verbal children not get AAC devices when it would make a world of difference to that child.....I could go on and on and on and it all boils down to money

I'm sorry, but life with a disabled child IS very wearing. yes, we adore our children but it isn't a bed of roses (thanks to the system) and people do struggle to cope

[Laurney]

This is slightly off the subject of the thread, but thought it might cheer everyone up, and illustrate the point that all children are obsessed over by their mums: DD (who I was talking about below, who is deaf) has a TOOTH! I just discovered it!!!! OMG she is five months and has a tooth already! Clearly she is a genius...

[Laurney]

(A tooth-growing genius)

[gess]

I do think mainstream schooling is often much harder on the parents than special schooling. Numerous people said I looked ill when ds1 was in ms, life did get a lot better with move to special school.

I know they vary, but this drive to shut special schools worries me. I know inclusion can work, but there nedds to be choice. They shouldn't be shutting sepcial schools until it is working routinely.

[Peachy]

I think just one of the things about special schools is that there is often some kind of community there- at school I stand alone, all the Mums have been here with their kids, they don't come again- DS1 scares them too much. But if you don't invite them, they don't talk to you either. So they all stand in their little groups, I stand one end and the Mum with bi-Polar stands the other (we used to stand together but the kids fight if we do- big personality clash).

Right now, i'd give anything to be aprt of a group that ahs even a vague idea of relaity for us

[minorityrules]

There is a need for both imo, across ALL the varying needs. In an ideal world there should be more severe/moderate/mild LD & physically challenged schools that all have links with mainstream for part of the day/week

The mild end is the where the schools are closing and that affects my daughter, high/middle functioning ASD and back to the subject heading, many children with down's syndrome. Children with down's syndrome are learning disabled but to varying degrees, so a full time mainstream setting usually works very well for primary but it gets more complicated through secondary, when the differences become much more apparent, and mainstreams aren't brilliant in teaching lifeskills for someone with LD's. Mainstream can work but I think many children are let down by the system

I'm all for choice and intregration but it isn't for everyone and the need is huge for more special schools not to close them. Bugbear of mine

[minorityrules]

Peachy, try specialkidsintheuk.org

They have days out and even have a holiday once year (camping)

Anything goes lol

[Blossomhill]

TC ~ Just seen this and yes you have every right to feel upset. It makes my blood boil I have to say
I also hate the terminology "Aspie". yes my dd has Aspergers but that shouldn't be used to label her as a person ffs. For some reason people feel that if you have a child with sn/disability that the child is almost a 2nd class citizen and that upsets me a great deal I have to say

[2mum]

All our kids are human beings and deserve to have a life. It is very thoughtless of people who dont have children with these conditions to say things like this. They are children feck sake not toys. Its like i want this toy but not that one because it doesnt work the way i want it. These people need to grow up.

[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.

[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.

[FlameBatfink]

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

[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 ...".

[bullet123]

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

[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

[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!

[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]

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

[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????

[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.

[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.

[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.

[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?

[twoisplenty]

I have two children!!!