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

from damaged family in aus

parp is all I can say.

Well my damaged baby has completed her morning swimming lesson and then my damaged baby went off to mainstream school. This afternoon my damaged baby will attend a birthday party with lots of non damaged children.

Oh FFS - won't have a sex life and so on. I know of two couples both with ds who are married and it is great to hear them talk about each other - I think I could learn a lesson from them when I am getting annoyed with dh. I know of other couples although not married enjoy a healthy adult life - all aspects.

As to all those health issues - dd1 had a heart defect - now fixed. She is currently taking medication for her thyroid BUT has missed one day of school this year due to illness!! Far less than a number of children in her class.

thatsnotmymonster statistics prove you correct - women who have a personal experience of a family member or know of a family with a person who has ds are more then 66% more likely to continue with the pregnancy.

emkana
Wow he is absolutely gorgeous

I actually said more than parp.

Of course my daughter is so afflicted with ds that no one would want anything to do with her.

Of course you can see which one is damaged can't you!

beanie and others who would abort - do you actually know anyone with downs syndrome?

Sneakerpimp

my commebt "and I find it incredibly WEIRD that someone would want me to go through with such a pregnancy based upon the hypothetical chance that a child I might decide to keep might suffer brain damage or be ugly" was a response to the people who think women should make a decision to keep a foetus they do not want by using the logic that it could end up braindamaged or ugly. I thought it was a silly thing to say.

I am not the one who brought ugly children into the thread, I was merely responding to someone who had. Perhaps read back and you'll get the gist of teh conversation and the reason for my response.

yes nightbynight I do. I totally understand why some people would choose to continue their pregnancy but I personally would not. Given the choice and opportunity I would like to find out and be able to make a decision based upon my own needs. Just because I would make this choice for myself doesn't mean I in any way look down on people who don't.

Oh it always makes me PMSL when people think they have a choice. Go into ds1's school. SLD/PMLD - I have yet to meet someone there who had a choice.

Yes, I know people with Down's Syndrome. Wouldn't have made a difference to me. My sister and her dh, on the other hand, have a very different perspective and we respect each other's views.

jimjam - not sure what you mean but if it's in response to me I am talking about the choice to have tests and to then make a decision based upon the results of those tests RE a particular foetus.

Of course anything can happen to anyone at birth or in the future, those things are pretty much out of our control, but women do have choices during their pregnancy and a high percentage of women DO choose to not have a child after having these tests. That is their choice.

Most conditions are not picked up.

And of all the possible conditions out there DS really is a walk in the park compared to most. Learning difficulties are usually moderate, health issues are treated these days and a high degree of independence is the norm as an adult. Wish my son had that prognosis.

The daft thing is because ds1 looks 'normal' (see on my profile) people assume that he is more able than someone with DS. Everyone I've met with DS to date has been streets ahead of him in all areas.

Bloodyhell - that article has left me reeling. [schok]

That may be the case, JJ, but DS often comes with serious heart conditions. And people with DS who survive into their 40s often succumb to dementia. It's very far from a walk in the park IMO.

I said 'compared to most'. If you go into ds1's school & place DS in that context you will see that it is a walk in the park compared to many of the disabilities in an SLD/PMLD school. People for example think that DS comes with severe learning difficulties. Usually it doesn't, usually it comes with moderate LDs. Sometimes yes they can be severe, sometimes intelligence can be near normal.

I was talking to a friend with a grown up son with DS this week- she described his life as 'good' and talked about his future plans (marriage being one of them).

Dementia - yes is at a higher rate than in the rest of the population. But given that my grandmother died from early onset dementia I would reckon it's a possibility for me too.

I have come to the conclusion that DS is visible so people think it is worse than it is. Most have real trouble understanding that ds1 is less able (by some distance) than the norm for someone with DS.

What would worry me, if I had a pregnancy with a high risk of Down's, would be the long-term future. The way the child would be treated by SS and health professionals.

My sister is an LD nurse and is often a lone voice standing up for her patients. SS and the NHS often treat people with a lack of respect or even inhumanely - one of her patients suffered a head injury (in the community), had surgery, was sent to her unit for recovery, had a seizure, was sent in an ambulance to A&E. A&E refused to assess the poor man because he was 'non-compliant' (he had a head injury and LDs, FFS, it would just take a little more effort than usual, why not try calling an LD nurse for advice? Sister couldn't accompany because she was the only qualified nurse on duty in her unit, which is a whole other story).

A&E sent this head-injured patient straight back to the unit where my sister works, basically saying bog off, keep him there, we don't care if his medical condition deteriorates.

Then there are the patients who were discovered having sex and separated because people with LDs aren't allowed to have a sex life... they were clearly keen on each other because it happened again, they were separated again and treated like naughty children.

Other patients are dumped at the unit by SS, who dump all their possessions at the door and take away their homes, despite the patients having tenancies and wanting to return to THEIR OWN home once they are recovered. Or snatched away because SS wants to shift them, against their own wishes. It's horrible.

I agree with edam.

I have two cousins with SN who are now adults. One is in an institution, and will spend the rest of his days there with only infrequent contact with his family. The other (much less serious SN) lives a theoretically independent life. Except that her family and SS have to constantly watch out for her and every day is a worry.

My ds1 has a condition that wasn't picked up ante-natally. Would I have terminated the pregnancy had I known? I can't possibly give an answer to that because he is the son I love unconditionally and can't imagine life without now.
But, that said, his birth has had a tremendous effect on our family. My Dh and I have come close to splitting up on more than one occasion because of the strain on our marriage of having a child with sn. My life has had to take a completely different path than that I would have wished for. I had to give up my career to care for him with a direct impact on our financial situation. We never have any money and that has only become worse as he has got older. Our household income dropped by over £300 a month when ds1 turned 19.
And that brings me to the support you can expect as the parent of a child with sn. If you think it's poor for children wait until those children become young adults. If I thought I had to fight for everything when my ds was younger it's nothing compared to the struggle once he turned 16.
This can be applied to people's attitudes too. IME the general public are far more accepting of children with sn. They will cross the street to avoid an adult with the same condition.
I would never condemn someone for taking the opportunity that ante natal testing provides them not to have a life like mine. I do not take it as a personal attack on my son that they would not want the same. I didn't want this. I don't wish I didn't have my son but I do wish I didn't have the life I do and that he didn't have the life he does and could perfectly understand why someone else would feel the same.
As I said I can't possibly say I wish I'd terminated my pregnancy...I don't because that would mean I wouldn't have my wonderful son. But I do wish he didn't have sn and I do worry about his furture. My dh was diagnosed with cancer 2.5 yrs ago and along with being desperately worried about him it also, very selfishly, crossed my mind how the hell would I cope on my own if anything happened to him.

Those times are changing. Probably not within the NHS, but the NHS treats the elderly in the same way, and doctors are generally dreadful with LD's (about the worst people to give advice on having a child with LD's in my opinion)

But within terms of adult care things are changing. There are very good service providers out there. Yes you do need someone onside to ensure that SS pay for the best services, but good provision exists. My friend's son is getting married and part of that involves getting him and his girlfriend used to staying the night together.

There's much more realisation that people with LD's need to be allowed to make their own choices as well.

I'm quite optimistic that by the time ds1 is in his 20's there'll be a choice of good provision out there (although am well aware we will need to start fighting for it when he's about 14).

I also think the option for good adult care for something like DS is easier to find than for someone like ds1- as his needs are so much greater.

'. She must be free to choose and free to make a bad choice'

bitch

how dare she tell me the choices I would have made would be bad (did make? ds3 was hgh risk downs?) given that I have 2 kids with sn so a damned sight more rl knowledge of what it is like

ds varies, some people can marry etc. But I used to work with a chap with ds as his 1-1, he was 30+, in a unit for people with ver4y serious ld and yes, very challenging.... and every challenge we solved, and it was a joy to do so: behind the behaviours and the genetics was a fabulous person and I missed him greatly after I left.

'doctors are generally dreadful with LD's (about the worst people to give advice on having a child with LD's in my opinion)'

Yes Jimjams. Yes, yes ,yes.

Am constantly telling parents (in what i hope is pleasant and professional manner) that opinion of some common or garden GP means bugger all.

Come to think of it, opinions of many paediatricians are similarly as useless.

(Peachy, when did you go all Welsh? )

kiddiz- sorry crossed posts. I've found now ds1 is 9 that people cross out of the way to avoid him as well.
I do think adult care is changing (honestly), although am fairly realistic that if we don't really fight and dig out heels in with SS we could end up with very poor services (I'm fairly convinced ds1 will have to move into residential care in order to access anything decent).
I also think shutting Remploy in the way it has been was criminal.

Yes, "bad choice" was insulting and patronising.

Thing that would worry me, Peachy, is there are plenty of people at all levels in SS/NHS who work with people with LDs who do treat them very badly - regard them as less deserving of respect than anyone else. There's the tendency of bullies to seek work where they can feel Big and Clever and boss people around, of course. There's the fact that in some places social care is seen as paying 'a good screw' so people will apply for jobs even if they don't really care about people with LDs... I'd worry that my child would come up against some of them, rather than people like you or my sister.