Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

Its not a separet issue in that they're protecting her from sexual abuse, and ime its mainly perpetrated (not really the right word) by fellow patients. Yes there is a whole debate about sexual expression- but (imo) people whose disabilities are so profound aren't part of that debate.

I am with expat, we are not in the parents shoes and cannot comprehend what they have to go through caring for this child, knowing she will never get better - just bigger and more difficult to manage.

Remember how maddeningly frustrating puberty was when you suddenly had sexual urges and no outlets? How much more frustrating could it be for someone who is incapable of comprehending these urges? I would expect that a womanly shape with large breasts would make her more prone to sexual abuse - paedophilia is rare, abusive behaviour is not.

It does raise questions about where the line should be drawn though and I think that is what upsets people.

'I have seen parents on an American site about DS's leg making decisions about amputation or other surgery based on what can be supported long-term on their health insurance. '

It is a significant concern in the US, unfortunately, especially as it is also now nigh on impossible to have medical debts discharged in bankrupcy.

omg thats awful, that poor girl

Edit - I meant an American site I visit in relation to my DS's leg.
My DS's leg does not have it's own U.S site!

And nobody's picked up on my 'children in the bodies of adults' point...

Also, relinquishing her to state custody means terminating their rights as to how her care is governed.

Again, there are a lot of pragmatic issues facing US parents of disabled children that are not an issue in the UK, but very important there.

That's exactly the bit I struggle with MI. It was my initial reaction on reading the story this morning. And then I thought of all the other factors, and now I don't know...

but peachy it is one thing to remove this girl's fertility as it were, to perhaps remove her uterus so she wouldn't have periods and wouldn't go through puberty, but it is quite another to give her drugs so that even her growth would be stopped and so that she will, in effect, remain a child.

where does one draw the line? could you stop the growth of any child with severe learning difficulties because some of these children may be agressive for instance and it will be easier for their parents to manage them into adulthood? it's not just children who can't walk or talk that might be hard to manage as they get older - what about a child who is perhaps non verbal but can walk, run, pick up an adult and do them physical damage when they get older - could we modify those as well?

Me too- I feel very, very uneasy about this. Much as I appreciate that there are economic factors to consider it is very distasteful to think that they have had to do something this radical just to be able to afford proper care. I really don't want to judge the parents but it's hard not to attribute other (maybe subliminal) motives to their decisions, even if that's very suspicious of me.

But surely they have prevented her growth so that they can continue to care for her.

Can you imagine not being able to physically care for your own child because they were too big/heavy for you to do so?

And is that a decision for the child's guardians or for us to make?

I think it is a question for us to debate, and a question that is not solely up the carers to decide, actually.

I am really uncomfortable with the notion that we can dictate how parents in a position like this should deal with their child. She is being cared for and looked after, she will certainly never be capable of an independent life - so is it really anyone else's business?

littlerach oh I can as that is my life.
But you have equipment(hoists/ ramps ect) that help.
I think it is an interesting debate.

I agree. We put limits on a parent's juristiction over their children. And for good reason.

Yes, of course it is. As I've said, this is a question of how we, as a society, consider and deal with people who are profoundly disabled.

I see what you mean Wannbe. Now aggressive children with SN- have one of those . My life would be exceptionally easier if he wasn't to grow much more, it may (at this rate she says after a few bad bweeks) mean he is able to live with me as an adult rather than in a unit, however its very definitely not something I'd want for him, I can't explain why. Sam's Sn aren't so severe of course, but he is exceptionallya ggressive and hospitalises his siblings sometimes.

Part of it is what's the alternative? Is the loss of physical adulthood worse than being put into a vcre setting? To me, no. Others may disagree.

Agree with MI that is...

Upwind we can't dictate but can debate.

And I know it's all very well for me to make righteous judgements and I'm sure if I were a parent in that position I would wish profoundly that my child would stay a child. But whether I would be right to feel that is a different matter. And whether I should go to quite extreme medical and surgical lengths to preserve a simulacrum of childhood is yet another.

Of course we have to 'dicate' certain baseline principles as to how anyone vulnerable in society is treated. No one is saying 'they shouldn't have done this', some people are saying 'it raises issues which are of concern and valid to debate'

many adults are cared for with aids like winches/wheelchairs etc..size isn't the only factor when deciding how someone with SN should be cared for

jUst thought I'd mention that the 'grotesque' quote was not made by the parents, but by the dr heading the ethics committee. It is misquoted by the Guardian. So it is wrong to use the quote to detect 'distaste' from the parents.

I can see the point that this treatment will improve her quality of life quite significantly. What a terrible situation.

"But you have equipment(hoists/ ramps etc) that help".

Coincidentally enough a solicitor on Jeremy Vine's radio 2 show was making this very point.

One person who phoned in was a man who cared for his severely disabled son. He commented that you can get this equipment but you have to fight like the dickens to get it from Social services. They more often than not plead a lack of resources and departments argue over who will fund the care.

I can well believe this. I have never had to deal with Social Services but I have had dealings with the LEA and they can be some of the most dogmatic and obstructive people one could ever meet.