OH poor misguided me...

[eidsvold]

Just read this article dh emailed to me..

very interesting reading - especially the part that says I am misguded...

this

I also wanted to ask - friend of mine is doing her masters on informed antenatal testing and stuff like these two articles. If you come across any can you let me know as I forward them all to her to also use.

The argument about the cost is a favourite argument by a gentleman ( use the term loosely) who favours abortion of disabled chilren as economically it is cheaper than the care they will need during their lifetime.

Aborting any child would be cheaper than caring for it.

hmb I agree with jimjams about the pre-implantation. IMO it all basically comes down to money and resoures with these academics.They pick on the disabled for what.
What lies next????
Pensioners being told they have to terminated because they are a drain on society??
Accident victims???etc
It can go on and on.

Also like jimjams I feel that if I never had a sn child I would be a different person.The thought also makes me shudder.
I have learnt that quality of life is important also cuddles and a smile are the most precious things in life.
Having a child with sn changes your life for the better (at times it can be heart-wrenching) but it is hard for people to understand until you are in that position.

Sorry for the confusion, Janh - I was being idle in not typing it all out.

Jimjams, my friend's son just didn't seem to make the progress that people say is typical of ds children. When he was 4yo, he wasn't toilet trained, didn't speak, was very aggressive, uncooperative and demanding yet always seemed unhappy. He made his older brother's life a misery with the aggression and the strain on the family has been immense because the Downs seems to have completely dominated their lives. Afaik, they've had plenty of support from the relevant agencies but I suspect his mum isn't that robust, emotionally, and that's why she couldn't begin to think of coping with two such children.

Actually, I haven't heard how they are getting on lately, what with us being abroad and my dd no longer being at nursery, so it would be interesting to find out how things are going for them now, esp as he must be at school now.

These so called academics need help themselves,of the mental variety.Have just read article and was wondering how many things have been invented by the very people he and others would murder.I know that there are quite a lot of people who with very severe disabilitys of both mind and body have made amazing contributions to our society.This John Harris needs to be banned from the scientific world so that he can not pass on his sick ideals.I do believe that there are laws against discrimination.
I wonder how he feels about those who through some event,accident or otherwise, end up with disabilities or if he himself has ever been around someone with down syndrome.
What an imbecile.

Eidsvold i have a child with a heart condition, i didnt know when i was pregnant, but imagine being told after its born to put it into care, or get rid of it. It just wouldnt happen. Also with my first born i was given the wrong antibiotics for an infection. The doctor told me there was a slight risk of the baby being born "abnormal" and advised me to have an abortion just to cover her back. This whole thread is making me really angry. What next being told to get rid of a baby because its only going to get 1 GCSE.

I have a twin sister and we were both born healthy and normal. However she went seriously off the rails aged about 15 and hasn't been right since. She has cost the tax payer a lot of money in various agencies... don't want to go into a lot of detail here but just to point out that disabed doesn't necessarily equal costly. I have a friend who is seriously diabetic and yet manages to hold down a good job as a senior lecturer. He never takes a day off sick as he is so strict about his regime. Contrast that with the millions of so called 'normal' adult people around who take days off sick with hangovers. There was a report on recently about how employers are losing millions every year down to lost days off work.

it's a shame suedonim- although re-reading your message made me realise that that's a complete description of DS1!!! I suppose he's not aggressive, and can be co-operative at times but the rest is him! I think its common for children with DS to not be toilet trained at 4, I have a friend who's son wasn't trained at 7. (A lot of children with DS have coeliac disease apparetnly which doesn't help).

One thing did stike me though- does she have contact with other mums with children with DS. For me that is my lifeline. Without my autistic friends I would probably be barely able to hold it together. Interestingly enough I took ds2 to a swimmming class this week and met a mum with a little girl with undiagnosed SN. We got chatting and she mentioned just how difficult she was finding her antenatal group atm and how she was desperate for a diagnosis so she could get in touch with others. She said it had been a huge relief just to chat for 5 mins with me, just becuase I understood what she meant (and she was able to slag off her SALt- who I have the misfortune to know and who is not very good!) I personally think if someon is finding it difficult to come to terms with the disability then meeting others int he same position is a necessity. NOw I ring my friends daily rather than sob daily iyswim.

Another thing that comes into play is the child's personality. If you have a child who would have been difficult anyway then having a disability to cope with on top of that makes it that much harder. DS1 with autism is manageable, ds2 with autism would have been a total nighmare as he is sooooo strong willed and goes out of his way to disobey you.

I have this before but my dd has learning disabilities and faces very similar problems to children with DS (obviously) A learning disability cannot be picked up on an ultrasound but DS can. I dont feel that my dd is bad enough to have warranted an abortion. She is a beautiful little thing and is so much easier to cope with than her 'normal' brother! The only thing that gets me down about looking after her is the complex issue of her diagnosis and the fight for services for her.

hmb as for the pre-implantation with regard to CF that can only be a good thing. I dont think the emotional complications will be half as bad for families with CF. The only option available to my Mum if she wanted any more kids with my Dad was to have a CVS and if CF was detected to have an abortion - something neither of them would have been able to do. My sister suffered terrible with her CF all her life and even when she had a heart and lung transplant she had so many complications from her CF that life still wasnt easy for her She was a wonderful person, very strong and inspirational. And if I had the choice whether to have had her here with CF or not at all I would have chose the CF.

I am not saying termination is right or wrong, its all about personal choices. Whats right for one person may not be right for another.

fio2

Thank you for your feed back. I realise that this must be a very difficult topic for you. The kids I was working with came to the same basic conclusions as you have. They would all have opted for preimplantation testing. However they were all very much in favour of termination for 'abnormality', which made me rather sad. The black and white nature of yourth I suppose.

hmb ime they need to live a bit more before they get the shades of grey iykwim. Very black and white. Mind you I do think that the general opinion is to terminate for abnormality so they may just be repeating what mum and dad said iykwim.

Maybe inclusion will change this. I met ds1's teacher and classroom assistant (not his the general one) and they said that having an autistic boy in the class last year had been really good for the other children, so they were looking forward to having ds1 as well (although he is further along the spectrum than the boy last year so they may change their mind )

You are right I think Jimjams. We have a year 7 boy who has DS who has just started. He is fully integrated into the school and has a one on one assistant for all lessons. I don't teach him, but I've seem him sound the school and said 'Hi'. He seems to be coping reasonably well so far. Long may it last.

I've got one class from hell, and the best kid in it is a boy with ASD! He is a great lad, works like the dickens and enjoys the class. The rest are NT and drive me round the best, lacking focus, over chatty, so disfunctional dont-ya-know

I have said it on MN before and I'm sure it won't be popular, but if I could have known that I would have a severely autistic child before he was born I would not have had him. I don't want society to be perfect and I totally respect disabled people and their families. I just wouldn't want to put anyone through the s#+t we've had to go through and he's only 8!! There's plenty more to come. Our life with him and our relationship with him is just a small part of the experience. You all know about the rest of it and then there's the awful worry (that I don't indluge in) about his future. We are OLD parents already, he now has a little sister who may or may not take an interest in him but until 6 months ago he was definitely going to be alone when we are gone. He is also far from easier to care for than NT children. I know Jimjams has said this before, but having had a second child AFTER the ASD one, I can now see how easy it is to look after an NT baby. I'm not saying that NT kids don't have their problems but its all within "normal" development and issues that we can relate to. Then there's the issue of having a child who can't tell you how they feel, both physically and emotionally.

I do know where you're coming from davros- severe autism can make family life impossible, but I suppose its the problem with a spectrum condition. If I was told that a child I was carrying was autistic I don't think I could terminate as they may not be that badly affected. Some children with autism have effectively no life, but others have just a difference iykwim. The same is true of DS and of spina bifida - I think the spina bifida made me realise I personally couldn't terminate for disability that could well be minor. A friend at school had spina bifida- but literally she one kind of short leg for which she had to wear a special shoe- and that was it- so that ruled out minor disabilities- I suppose its the feeling that you are terminating someone who has a good chance of having a rewarding life iyswim. I think I personally would terminate for say anencephaly -as usually it is incompatible with life. I do think a lot of people would just terminate without really realising exactly what choice they have made iyswim.

Hi, Jimjams, thanks for your reply. As I typed my earlier post I did indeed recognise that my friend's son seemed to share a number of traits with your ds1, bar the aggression bit. I'm not sure whether she is in contact with other parents of ds children but I'm almost certain she will have had the opportunity offered to her. The services here are pretty on-the-ball and there are a number of ds children around as I reckon I see a person with ds on at least half the occasions I go into town.

I suspect that Davros has articulated very well how this mum feels wrt to another child with the same condition. In fact, just after her third baby was born, (and despite all the tests she'd had) he turned out to have a serious heart defect and coping with her middle child and a baby with a life-threatening condition almost broke her. Thankfully, the baby underwent a totally successful operation which relieved some of the pressure of the previous months.

I suppose that her experience is a message to us all that no one can guarantee us a child without any problems.

BTW, I do find it insensitive not to say insulting, when other people think we're bonkers to take such care of our SN kids. I've had the "get him in a home" talk before, "get on with your life". OR they think that we're so wonderful because we cope and always say "fine" when asked how things are. If they don't know what its like first hand, they don't really have a valid pov, no matter how well meaning and nice they might be. That's why we need spaces like this which is quite different to talking to other friends with similar problems although that is great. I think MN is somewhere that gives me (and hopefully others) the opportunity to really express what its like and to be honest. Sound a bit glum but don't mean to

Davros - don't know your background but just wanted to say that it was brave of you to be so honest about your feelings. I hope that doesn't sound patronising - I don't mean it to - I hope I have put this OK

The other day I was talking to a friend about my ds and she said "you sound so calm". I asked about her children and she said her ds had just had his 4 year assessment (there is just one day between our ds's) and that they had picked up a slight speech impediment. Then she went on out how worried she was and there was a few other things that had happened like her other ds had fallen down the stairs (he was fine). Anyway she was really stressed obout all these things and her BP is through the roof.... she often gets like this, just goes to show that no matter what your 'problems' are some people just magnifiy them totally out of proportion. I actually feel really sorry for her and feel that I am lucky that I can appreciate things and enjoy my life even though to some outsiders I should be 'suffering' more.

Eulalia I do feel that ds1's problems have given me balance. I would be happy to be unbalanced and not have him autistic but still

I've really noticed it recently. I'm beginning to think that ds2 may have ds1's speech problem whatever that is. He does lots of things very like ds1 (but not copying- he copies him as well but that's different)- what I mean is he does things with his speech that ds1 did at the same age as him. But somehow I just can't get myself to worry about it at all. I feel like I should be but I can't. I know he's not autistic (not remotely- boy doesa that one communicate) so what's a speech problem (and this would be a pretty major one if he is like ds1) but still it's fixable.

I have a funny feeling that if I hadn't had ds1 I would be finding nothing to worry about. I don't know school grades, which reading book he was on, etc- stuff that really doesn't matter. And if it does all come together as he grows up htme I know I won't be a clingly MIL because I'll be so overjoyed he's off able to live his own life. Fingers crossed (feeling a bit positive today don't know why).......

Jimjams, there's an article in Saturday's Telegraph magazine about Stephen Wiltshire, the young autistic man with artistic ability. He apparently now leads a pretty independent life. There's also a review of a new book, 'Wild Boy' by Jill Dawson, a fictionalised story of such a boy found in France 200 years ago. It seems that all the pointers lead to him having had autism. I can't get the DT website on screen to send you links but I can post you the RL articles, if you're interested.

Davros,
I know I've said it before on other threads, but having a (physical) disability myself I was very determined not to have a disabled child (my stepson has autism). We had lots of scans, and dh and I had already agreed to ask for termination if anything had looked wrong.

We knew of course we couldn't test for autism, but trusted the statistical improbability (which proved right in this case, thank God). Oh, and we've rejected MMR, and even single measles vaccine, just in case.

What I set out to say in this post is that I wouldn't put another child thru what I went thru (surgery, fight for a decent education, bullying at school, discrimination in employment etc etc) if I could help it.