Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

Im 6'1 am i unaturaly tall? its completley irrelevant to this discussion but if i was able to take a pill every day when i was a teen that would stop me growingi would have ripped your arm off to get to them.

Yea Mamazon I'd say you probably are unnaturally tall and as you say its a statement thats completely irrelevant, for reasons I've already explained.

sorry, i seem to have offended you.

I'm not offended Mamazon

I'm merely saying that the comparisons made between Ashley's case and those of consenting teen girls of the 60's arent the same.

I did try to explain that in the posting I made at 19.19 hrs.

Toastee - I have no intention of calling "the disabled rights commission". What would be the point of that?

I can ask my dsis, who has cerebral palsy, but I cannot think of any reason why what she has to say on the matter is more important than what my dh or anyone else has to say. She has a disability, it makes life difficult for her, but it is in no way comparable to having the mind of a three month old baby in a nine year old body.

Anybody who can express an opinion on this does not have relevant personal experience simply because of their disability.

Exactly upwind.

Message deleted

People w/Turner Syndrome are missing an X chromosome. It is chromosomal abnormality, not a hormonal imbalance.

'They think it is wrong because they think it is taking away a choice from him, they think I am trying to stop him being autistic.'

That makes no sense. I mean, how strange, seeing at that there is no way to get rid of someone's autism.

It comes from the idea of "recovery" expat. So a number of able autistic adults feel threatened by the idea of parents desperate for their child to "recover". Like autism is something distatesful. I can understand why they don't like the cure culture, BUT I object to being told that that's what I'm trying to achieve for my son. All I'd like is for him to be as able as them - in terms of being able to make his own decisions. They (imo) have very little understanding of what autism is like for him, and from corresponding with, reading and listening to people who have autism thatr manifests itself more in the way that his does it seems that people living with what he lives with would agree.

That's why as upwind says its no more relvant asking a disabled person their view as it is asking an able bodied. IN terms of what Ashley experiences or lives with, they have no more idea than someone who is able bodied. I suspect her parents have a better idea than a random person from the disability rights commision. Sure discuss how widespread this should be (it shouldn't be widespread at all imo) but any decision should be made purely in Ashley's interests, not in the wider political scheme of disabled rights. Ashely's rights should come first.

I see!

I've only ever had experience w/AS adults, and even that has been limited.

Although, you can still tell they are differently-abled.

There's quite a culture around high functioning autism now, which can only be a good thing. It includes obsessive interests, right to stim etc. All well and good and I'm in complete agreement. One of the autistic adults I talked to distinguished that culture though from biomedical conditions - so things like ds1's OCD, his poor executive funciton, his verbal dyspraxia, his poor body organisation that stops him talking. She was saying if I bought into the "I should just accept that about him and not try to do anything about it" line then I would be doing him a disservice. She basically said it would destroy his chance at life. Anyway I merrily carry on doing what we are doing knowing that the way we do it is "blessed" if you like by others like him, even if others who have the same dx, but who are not like him don't like it.

Oh should add before I offend someone that I'm not knocking the problems that high functioning people have, just they are different problems. Yes for them one of the biggest problems is acceptance, and is other people and opther people's attitudes and lack of understanding, and other peole's attempts to turn them into something they are not. That is a problem for my son as well (and I do respect his autism and him), but a bigger problem for him at the moment is biomedical, his learning difficulties, his OCD, his poor executiive function. That's what we work on, not his autism. But their experiences of that - for example of not being able to coordinate your body sufficiently well or quickly to respond verbally (even if your mind can) are no more relevant to him that yours or mine.

How on earth is Mamazon 'unnaturally' tall? She's completely naturally tall. She is, perhaps, unusually tall. But that's a totally different thing.

and the TREATMENT is the same. So the issue of side effects is the same.

I understand the attentiveness with which political disability rights groups follow events like this...but again, I think that their enormous value and impact comes in a wider, more strategic context than judging individual cases.
I can see that this case could, superficially, echo the attempts to force people like Alison Lapper to be more 'normal' by using clumsy agonising mechanical legs when she was a child, rather than persuading society to have a wider acceptance of extreme difference, and that it is the work of disability rights group to campaign ofr wider acceptance of the way people ARE.

But enabling individuals to have a more comfortable, loving family life, access more quality of life whatever that life may be, has to be of paramount importance to individuals.

Actually that's interesting Blu, in that the Lapper case involved forcing a fully mentally capable (more than mentally capable, actually) child to be more 'normal' and so causing her physical discomfort. You could say that the Ashley case (while complex) is trying to do the opposite, make her less 'normal' (if it is possible to do that to a person who is so profoundly disabled) to make her more physically comfortable.
As you so movingly said, often disability forces parents to make thoroughly miserable choices. I wouldn't allow a doctor to remove my child's limbs for example, because to my eternal gratitude, at the moment, he has perfectly good, functioning limbs that aren't, say, being eaten away by meningitis or crushed by an accident. If circumstances were different, I would do different things. I couldn't see myself doing the 'Ashley Treatment', no matter what my child's condition, but then I am overwhelmingly grateful that it is utterly irrelevant to me.

i have read the thread and the blog but Feel I am missing something.
Was there any mention of posture management?

I wonder if the family are being given police protection during all this debate ?

Mamazon, I am 6ft1 also. Completely naturally so. Unusual yes, unnatural no, definately not!!

Incidentally, my parents investigated oestrogen treatment to limit my height, I had bone scans done etc, but in the end they decided to let me be tall. I am 6ft1, my sister is 6ft2.

Sorry, completely off topic I know, but the fact that someone stated Mamazon was unnaturally tall got my back up!

Will go now

It did feel a little odd to see it tbh.

I think its a lot more common nowadays to be 6ft+ but you cannot imagine how pleased i am that DD is still only on the 75th centile for height.

I have always hated being as tall as i am and as i say, If i had been given the choice i would have taken any pill offered to stop my growing at a more "normal" size.

i have read the thread and the blog but Feel I am missing something.
Was there any mention of posture management?