Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

I think it is crazy to tailor treatment to someone's biological age instead of their mental/emotional age.

that's the thing tho Edam, we can't and everyone esle has trheir own battles to fight. You wouldn't believe the fights I've had in the last year just to get the LEA toa gree to assess achild with a diagnosis. In the time since dx I have developed post traumatic stress disorder, agoraphobia..... and still the fighting ahs to continue. I'd give anything for asomebosy to take oer, won't happen though

Bigbird2003 when you mentioned the fact her parents call her 'pillow angel' etc, I too thought it ever so slightly disturbing. As the only male here and one who's view is in the minority I chose not to refer to it. But since I now realise I'm not alone in that notion I will support your idea, its patronising, somehow in my eyes this sends out the wrong signals.

Ashley, I'm sorry to say isnt a little 'bonsai baby' who through surgery can be given the elixir of youth, she's a child who naturally needs to develop into an adult. It's in the interest of her own wellbeing that her body develops naturally, It's her birthright. Despite what others say (and ironically it always seems to be overlooked in my posts) she will suffer in later life as a result of unecessary treatments perform on her body whilst it is (or should be) still growing.

If Ashley hadn't been 'tampered' with (it's not a phrase I like but it does seem to describe things appropriately) then she she would no doubt have turned into a beautiful adult, that may indeed have presented additional problems to her parents, but thats a sad fact of disabilty. The added burden of looking after an adult as opposed to a 9yr old 'pillow angel' isn't Ashleys concern, it's problem of mechanics that her parents need to address. It's often been said in this thread that care isn't easy to acheive in America, that may well be the case, again that isn't Ashley's problem. Why does the poor girl have to sacrifice her body to fit with society ? It's a brutal question but one thats better answered by the electorate than an unecessary hysterectomy.

Also a place where they do provide early intervention though edam.

I look on US websites and dream of accessing the stuff they have (all costs of course, but it's not even available here)- currently I am accessing the US for services- second time I've done it.

The UK has a real "there's no point doing anything" attitude. The US has a "let's give it a go". I've always found anyone I've approached in the US full of hope. Here I've been told ds1 is just hopless "there's no point giving him speech therapy because he doesn't understand anything anyway" quote. My US people at the moment have (yesterday) sent me a program to try work towards speech (not just speech - lots of other things as well, but they haven't written him off without trying).

A friend of mine with as ASD daughter (pervasive developmental) came back a year ago, for her in her situation with money the USA was fab. The problem is the huge numbers of people that fall down on the money part- she got her DX in five montsh, it took su 3 years.

Ganymede I can't argue that the electorate has to sort it, but Ashley's needs are now, not in X years time. Of course it needs wider addresseing, of course it shouldn't have to be that a person moulds to fot society, but what choice do they have? I REALLY hope this doesn't need to happen again and the fight is taken up for beytter provision. But 9and trust me on this) you really had better not plan a disabled child's future on what you HOPE is going to materialise, because ime 9 / 10 what amterialises is even less than you thought initially.

I see the society must fint in argument as being idealistic pie in the sky.

Agree completely about the money bit Peachy. But I think that's the same here really. Until ds1 went to special school we paid for every service he had. Hence our rather large mountain of debt.

I do agree that society SHOULD fit in, I just think it WON'T and that has to be considered as part of the "what will benefiut this child" question.

Ganymede, I see you don't address a single one of my points. So what about the dramatic risk in one of her MAIN day to day medical problems - that of bedsores? What about HER need to be carried and hugged and transported? She does NOT have ongoing treatment. She had one operation (over and done with) and a short period of oestrogen treatment.
She 'should be' growing. There are people out there who should 'naturally' be 7'6", but have medical treatment to keep them shorter. Is this evil and wrong?
About the leg question I posed earlier, I note you didn't answer it.

We've been lucky to get sponsorship so far for Sam, won't last much longer however which is why the LEa are being attacked with gusto. Have enough student debt around my neck as it is .

We were going to get a cosultant specialist to do sam's assessmenst for the LEA (lea suggested it) but the price tag was too high for us.

Many thanks to those who've taken the time to reply to one or two issues I've tried to highlight within this debate.

I've made the point I intended and see no point in discussing the matter further, wether you agree with my view or not is entirely your own descision, it's a view you are entitled to in the same way as I am entitled to mine.

The debate was both enjoyable and educational, I have learnt a lot.

Sadly another poster who disagrees with my stance has chosen to resort to abuse rather than constructive comment, the debate could go further and I'm sure both paties could learn a lot, however I'm not here to be referred as 'ignorant' on the basis my view differs from theirs.

Incidently to the chatter who accuses me of not replying points raised, I'm sure if she were to read my comments in depth I have indeed answered every single one.

Many thanks.

am I a lone voice objecting to the word
chatter?

My 9 year old ds is like Ashley
I can totally understand why the parents have made this decision.

i hope this case brings out the real issues of disability eg

whole families in isolation
loneliness
lack of proper or no equipment
no respite care

for some of us, the above are a daily reality
we are treated like shit and our needs are ignored all because we have a disabled child
we are supposed to cope
and we bloody do a good job of it with what little offerings, if any offerings of a social service table

all i can say is when you live in the reality
you can be more understanding

Glad to hear the US stuff is helpful JJ and very sad about 'hopeless' attitudes. Grrrr (only angrier).

Peachyclair, that's unbelievable (the wait for assessment). It's rationing, really, isn't it? They'll only provide what people actually need if their parents kick up enough of a stink. Shameful.

Aloha, there are beds which are designed to lessen the risk of bedsores. Unfortunately in this country you either have to stump up the cash yourself or go through endless assessments to get one. Operating on someone to reduce the risk of bedsores is ludicrous (although clearly that isn't the only or main reason for Ashley's parents taking the decision that they did). If you can afford surgery in the US, you can afford to employ help to turn the person regularly.

Seems to me it's the parents who are ill and not the daughter, why the hell are they hell bent on removing any traces of adulthood from her ? They are treating the poor girl as a family pet, calling her 'pillow angel' in itself smacks of stripping her of human identity.

The girl isnt an object as her parents would like to think, to qoute from their own website they 'visit her on her pillow in her room' what other parents 'visit' their child in their own home ? To me it's a case of they cant face the idea of their little 'pillow angel' growing up, it all strikes me as very disturbing.

They removed parts of her body that she doesnt use, why not remove the parents brains ? they dont seem to be using them.

More to this than meets the eye I bet.

toastee you have very strong views on this what makes you thing this.?

It also seems very disturbing 2shoes, the parents website is full of contradictions and double standards. One minute the girl can't communicate and has no idea of dignity but in the next breath they refer to her as liking a certain kind of music and responding to whats on the TV.

Why on the photo's are the parents and healthy siblings faces blacked out but not Ashley's, have they something to hide, isnt she allowed the same dignity ?

What's this nonsense about breast removal protecting her from sexual abuse when the parents have said only they or the grandparents will care for her ?

Funny how they waited till their work had been done before telling the world their story.

The idea she's a 'pillow angel' is dehumanising, they even say their website is to help the parents of other 'pillow angels' I bet the website is more to do with getting publicy so they can sell the story and make a few quid later.

Very disturbing.

The abuse thing is a canard, I agree, sadly the sort of low-lives who would abuse vulnerable people don't usually care how attractive their victims are.

I bet its got far more to do with an insecurity that they can't bare the thought of Ashley growing into an adult.

The girl has not only been physical mutilated for some persverse reasons she's now been degraded to some kind of family pet who sleeps on her pillow like a cat in a basket.

Child abuse is what I'd call it.

toastee you make some good points

toastee, they're using 'visit' in the American sense, meaning 'spend time with' or 'chat to'. Someone from Boston recently said to me at a party 'I'm sorry I haven't had time to visit with you' when we'd spent a whole evening in the same room.

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Doormat thank you for your contribution, its sad you seem to have the same problems accesseing support as us, I hoped our lack of input was because Sam is less severe- sadly it seems not

Toastee I am glad that you are the only person intelligent here enough to not only be able to read the whole story but to tell us how it really is and indeed recognise thast we're all wrong with our different viewpoint. )Yes that was clearly meant in a very sarcastic tone). I am happy to deabte with those who wish to discuss, I will not enjoy being preached at or having my input belittled.

Hi Peachy,

If you read what I said it was thats how it 'seems' to me. No-one is preaching to you, you have the right to believe what you wish.

All i'm a saying is it 'SEEMS' to me the parents motive may be a bit different to how they want the world to view it.

An earlier poster used the word 'canard' a great way of describing the story I think, theres a lot of smoke and mirrors here in MY opinion, not your opinion MINE.