Couple Sue Over DS Misdiagnosis

[PierreSentMe]

My best friend's big brother has Down's and I grew up with him, and my little cousin has autism, so I suppose I've never exactly seen it as a disaster, I just can't see what's so bad about it...

I can see how it can be viewed as not a problem when they child is small but my twenty two year old autistic cousin can become violent when he struggles to understand something or there's something he doesn't want to do. He's over six feet tall and has hit and thrown things at a number of the teachers at the special school he used to go to.

My sick aunt has to put up with his mood swings and be careful of how she phrases things so that he doesn't get angry. My uncle just shuts himself in his office and rarely comes out.

That is what's bad about illnesses/syndromes (whatever you want to call them) that affect mental development. For the care givers it's pretty much a life sentence : (

[katb12002]

I can see how it can be viewed as not a problem when they child is small but my twenty two year old autistic cousin can become violent when he struggles to understand something or there's something he doesn't want to do. He's over six feet tall and has hit and thrown things at a number of the teachers at the special school he used to go to.

My sick aunt has to put up with his mood swings and be careful of how she phrases things so that he doesn't get angry. My uncle just shuts himself in his office and rarely comes out.

That is what's bad about illnesses/syndromes (whatever you want to call them) that affect mental development. For the care givers it's pretty much a life sentence : (

I can understand that you see how difficult things are for your aunt, but I would never consider my beautiful son a life sentence - and I would hate for someone else to call him that. There are many many people out there who love special needs children, and I know many who have adopted special needs children, some of whom would never have considered adoption for a 'normal' child. If your aunt is finding things such a struggle, taking care of her son's needs and her own, has she considered maybe putting him into care - it may be the best thing for both of them especially if it is having a detrimental effect on her health.

[beautifulsouth]

I can see how it can be viewed as not a problem when they child is small but my twenty two year old autistic cousin can become violent when he struggles to understand something or there's something he doesn't want to do. He's over six feet tall and has hit and thrown things at a number of the teachers at the special school he used to go to.

My sick aunt has to put up with his mood swings and be careful of how she phrases things so that he doesn't get angry. My uncle just shuts himself in his office and rarely comes out.

That is what's bad about illnesses/syndromes (whatever you want to call them) that affect mental development. For the care givers it's pretty much a life sentence : (

'life sentence' is actually kind of offensive :/ Obviously we don't agree on thsi so I won't get into it, but I know of two people (a friend of my mum's and a friend of a friend) who've had their severely autistic children - well, adults - moved to group homes / specialist care for people with their needs. If your aunt is really finding things that much of a struggle, it might be a bit better for both of them if she looks into at least some kind of respite.

Everyone's different, I suppose that's my point. Maybe some people would have aborted if they thought their child would be disabled because they'd heard stories like your aunt's. When actually baby could have turned out like katb's son, or my beautiful little cousin... That's a sad thought for me.

[JJ]

I can see how the term 'life-sentence' could be seen as offensive personally but I also see it as being true in many situations :L Adults with severe learning/behavior problems are incredibly hard work. They have to be suppervised 24/7 for the rest of thier lives. If you have a disabled child in your 20/30's you will never have a day off for the rest of your life - that is a life-sentence imo.

[PierreSentMe]

My cousin went to respite care once for a weekend and he was supposed to go there regularly after that since he said he enjoyed it but he refused to go when the next weekend came up. I don't think my aunt and uncle have ever considered a care home for him though but to be honest they might have to start thinking about it. They're both nearly sixty and grandma and granddad (who live with them) are eighty six and ninety one. : /

I wasn't intending to offend anyone by the way, so I'm sorry if I did. : )

[jamaka]

autism isnt detected at birth as most are not diagnosed until pre/school age so not sure how the abortion argument would work on such matters?

[katb12002]

autism isnt detected at birth as most are not diagnosed until pre/school age so not sure how the abortion argument would work on such matters?

Exactly this! - my son's autism was not picked up on the scan, infact that wasn't diagnosed until he was 4. All they told me when they picked up his 1mm of extra fluid, was that it could be anything from downs syndrome to something like a limp or dyslexia or even nothing at all. - it actually had nothing to do with the medical condition he actually had. He had a brain scan when born which said he was absolutely fine on that score - his medical condition was not picked up till he was a year old. Despite the fact the head doctor said it could mean nothing, I was still able to have an abortion way past the 24 week cut off point just because there was a chance my child could have a disablity.

[jamaka]

thats why I hate debates on such matter's I cant agree with abortions for what ever the reason,

[PierreSentMe]

autism isnt detected at birth as most are not diagnosed until pre/school age so not sure how the abortion argument would work on such matters?

No I know that, I said so a few posts ago. I was merely talking about it in regards to how having a child with a illness/syndrome that affects mental development can impact a family. : )

[beautifulsouth]

Despite the fact the head doctor said it could mean nothing, I was still able to have an abortion way past the 24 week cut off point just because there was a chance my child could have a disablity.

I think this is my main problem with it really. My partner has a genetic disability. It's physical, affects his connective tissues and causes him a lot of pain, dislocations etc. It's autosomal dominant, so each of our kids will have a 50% chance of getting it in some form. But it's so variable... They could have nothing but a few extra stretch marks, through a limp now and again, all the way to wheelchair bound by age 20. I mean... Even if I could know worst case scenario for sure I wouldn't abort, but I can understand that some people would hear 'disability' and immediately abort, even though it could be such a tiny thing, and there's no way of knowing...

There isn't a genetic test for what he has yet, but we've talked about it and definitely wouldn't use selective IVF even if the test is available by the time we have children. I like the idea of fertilisation being random, taking what you get... Broody agaaaaiiiin.