Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

obviously you haven't got a disabled child otherwise you wouldn't need to ask.

just read the link again and not sure that they are right to keep her "small"

I don't have to be them all the time, fortunately, therefore it's really not right for me to judge the decisions they have made for their child and her long-term future.

It's obvious they want to be able to care for her as long as they can and that her condition will NEVER improve.

It's also obvious a team of physicians and ethicists considered their actions very carefully.

There but for the grace of God go I . . .

if it allows them to get through their very difficult life, and enables them to enjoy rather than endure some days. then so be it.

The arguments for it seem valid, though.

I dont know if I could do that, but, I dont have a child with a disability, and have never really pondered what happens to a girl with such a condition when she reaches puberty and the changes that occur.

Therefore, some of the points they make seem pretty valid to me.

And crikey - she doesnt need period pains to add to her list of discomforts.

Have to say when I read it this morning I thought it was fair enough, they seem to have given it a lot of thought and have very valid reasons, so hard for them though.

It's very sad that they had to consider the possibility of her being a future victim of sexual abuse, but a valid one, considering the fact that they may one day be too infirm to care for her, and she will still be an adult.

I don't want to make any judgements on the decision those particular parents made, as doubtless the facts given out will be patchy etc, and i have no idea about how they might be feeling about their and her present and future.

But there are ethical points to consider when tailoring' a body to suit circumstances, and I am really really sad that anyone needs to be so anxious about the potential of sexual abuse that they undertake such surgery. They must be unsure about the security of her care, and how upsetting must that feel?

I must admit, it makes me feel a bit odd - but it isn't as if they have done anything to damage the quality of their daughters life, and would seem to have made the decisions in order to enable them to care for her more easliy and therefore improve her comfort.

I think it is great that there are some doctors who will listen to the parents. It is not for me to judge but having read the link I think they have thought long and hard about this and it seems to be the best thing to do. They want to keep their child with them which is fantastic. I also find it amazing that there is surgery available and developed that can do this. Good luck to them.

I can't imagine how hard it must have been for this family to have had to come to these huge decisions, as to what is best for their child as she grows up. I imagine they have doen a lot of soul searching and research and not made the decisions lightly, and with the expert opinions and advice of the child's doctors. Who am I to judge?

I guess the sexual abuse worries is when they are no longer able to care for her themselves and she is in the hands of others

Sorry, the last bit fell off the end of my thread title. Should have read "...keep their disabled daughter a "child" forever".

Fair enough she won't know any different and they are the ones caring for her, but this quote from the parents makes me uneasy: "The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

I just detect their distaste is the underlying reason for their decision. Like why do they need to remove her breast buds?

Why not volunteer to offer respite care to persons w/her condition, DullWitch, in order to see for yourself how it is to care for a fully grown person w/such a disability, before making a judgement?

She lays on her back all the time.

She cannot sit or even hold her head up.

Her family wants to care for her for as long as they can but the fact is, they're going to get too old and infirm to do it one day and probably die before she does.

So they made some tough decisions about what to do.

I really feel for parents in this situation.

I'm not judging, Expat, I m merely questioning. Is that not allowed?

You detect their distate?

Are you for real?

You don't even KNOW them, much less able to tell how they live their lives from day to day and the heartbreak that goes with being a caregiver for their child who will forever have the mentality of a three-month-old baby!

Yes, you are judging.

After all, you can 'detect their distaste' even from thousands of miles away w/o even knowing them.

Absolutely. But that is a strange quote, is it not?

People print stories like this to sell you newspapers and make you click on their website. So of course they're going to edit articles and chose quotatations to suit that angle.

I'll bet these parents' lives are a nightmare a lot of the time, and obviously they love their child, as they are her carers and want to be as long as possible.

they removed her breast buds for her own comfort. for someone who cant support their own body weight and is laying down all the time, breasts can be uncomfortable. I suspect Ashley still has a lot of tummy time as part of her physio and with breast she will find some exercises uncomfortable.

Maybe they do have some distaste, maybe the idea that they have distatste would devastate them. Maybe they didn't actually mean the word 'grotesque' - which had been fed them in a question - to carry over into the idea of thier dd grown-up, but simply meant that as a person with a fertile adult body, she wouldn't have the mental caapacity to have control over that. I just don't feel able to make any judgements on this family at all...but am pleased that an ethical committee will have heard more and more detailed information than any of us - because it is a big decision to take.

I don't think that the values and ethics of the parents of disabled children are any less accountable than those of anyone else, though...it is fair to ask questions when extreme situations arise. But parents of severely disabled children are put in situatiuons of more extreme daily lives and decision making than most of the rest of us, so I think it is fair to remember that we haven't been in their shoes.

I have to say this story made me shudder. I don't think it is solely about sexual abuse -it is, as DW says, at least in part because they would prefer what they perceive as a more accurate 'fit' between their daughter's stage of development and her actual age.

Neither of my children have profound learning disabilities and I cannot say how I would feel about the prospect of my child getting older yet remaining profoundly disabled. It's significant, though, that disabled people have expressed their opposition to it.

God, there is no point in discussing an issue on here any more, when all possible debate is stomped on so hard. And anyone who questions the "correct" line must be evil and uncaring.

There is a link in the guardian coverage to the parents' own statement.

'ang on DullWitch...here comes the debate

That was directed at Expat not the measured views and thoughtful views of Blu and MOtherinferior.

What has have disabled people said MOtherInferior?