Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

"Is the parent who allows their child's leg to be amputated 'mutilating' them? Suppose that leg was useless to them? Change your mind?"

Ashley's legs are useless (as are are arms and teeth) Shall we whip them off too?

And no mind not changed

Gannymede ignorant? Didn't he say he was a surgeon? One that had performed hysterectomys? I think he's viewpoint is very valid

I know profound and severe are very different but they are both disabling. What if someone discovers Ashley does have ability to communicate at some point? That she has some mental capacity? Does it make this ok still? Her sexuality is still important, whether she uses it in a sexual way or not.

Testicles may not cause the same inconvience as periods or breasts....but they can cause discomfort if laid on awkwardly or if pants are bit tight! Removing Ashleys breasts, in the main was to de sexualise her (in case a carer was to assault her) Saying the same about a young man was to say is that not the same thing?

It's like they want to take away everything adult away. I still think it's wrong.

JimJams, the one at St Audries near Minehead used to involve famillies because the staff really wanted what was best for their patients. It was an amazing, life affirming palce where everyone- frrom the chef to the managers- was directly involved in all the care, and really wanted to be there.

I see. Thanks, peachy and jj.

There are exciting things happening with person centred care ideas for adults with learning disabilities here I've heard. i just hope the theory will translate into good practice for any mumsnetters' children who may need it.

Hopefully ds1 will be picking out his own clothes with his own money anyway, jj, or being supported to do that. Does he notice what he wears at all yet or like particular colours, textures, etc?

I know if we find somewhere wonderful I'll still go to my grave worrying that 5 minutes after I've gone, the place changes hands and it all goes belly up.

I don't expect ds2 and ds3 to care for ds1, but I do hope - as Davros has said in the past- they''ll care about him. DS3 is shaping up to be stroppy enough to take on SS ;o

I think that if it comes to care homes, and it may not, then you will find the right one, just as you have found the right school.

Scummy he'll get a top of ds3's (2 this week) from the washing basket and try to put that onto himself as trousers, so I dread too think what would happen if he was given free choice

bigbird your opinion is valid, of course it is. I'm not trying to change your mind as such- just show different sides.

ganymede's posts were interesting too, but VERY heavily biased to the biological, and I wouldn't personally believe every claim to be a Surgeon I read on the net: he amy well be, but I ahve no way of knowing.

If there was such a clear answer that everyone could agree on this thread wouldn't exist, yet such respectable, intelligent posters as 2shoes, giddy and jimjams (all SN parents) differ on this. Because there is no one set of rules for right and wrong: there is only love and each of us doing our best, which I think Ashley's parents were.

LOL jimjams- Sam does that too, can't grasp size, especially if it was his once. He has a thing about trackies too (soft clothes) so a typical outfit for him would be aged 4 trackies so worn they're stained and ripped, with a top that is soft but MUSt be stripey or with a regular pattern.

Stylish!

But only worth amending if it really needs to be.

And yes, I think Davros is spot on, With some good services around, "caring about" really can make an immense difference. My friend's mum has supported her severely disabled brother for many years in this way. They are both in their late fifties and thriving in their own ways, she says.

I wouldn't like to say for sure whether I thought they were right or wrong without visiting them, and meeting Ashley anyway. It's too complex without knowing her.

Scummy- have emailed you something interesting

When he wears one of ds3's tops as trousers (legs through arm holes,) I do tend to change him- tiny tops worn as tops I sometimes leave

LOL! I bet he'll be able and willing to have quite a lot of input. He clearly has strong and interesting fashion views.

Fio, scroll down a bit. Think somewhere Bigbird mentioned having a disabled young adult.

I know I can rely on ds2 to care about / advocate for his brothers, I despair that he may have 2 Sn siblings and feel the need himself to provide some element of care if it is required (although Sam is unlikely to require a care home, I can't see him being 100% independent either). I'd love another child, as would Dh. But if thsi child were Sn the consequences for ds2 could be huge. We don't expect him to provide anything for his siblings, but he may want to personally.

Yes, I am a parent of a child with learning and physical disabilities. I also am involved on a day to day basis with children and adults with all degrees of learning and physical disabilities (profound included)
I am also close friends of parents, carers and carehome workers of all disablitities

I firmly believe a disabled person should not be molded to fit society (or her parents) Society needs to mold to fit the disabled person (including these parents)

I find the question highly offensive, as if I didn't have all of the above in my life, would that make my views less valid?

bigbird2003 I hope we see you on the S boards sometime- active debate aside, you will be most welsom in our ittle 'sub community' (its an idea perhaps to start a thread asking who is who....... all these names.... I've been here forever and I cannot follow everyone sometimes )

Society needs to mold to fit the disabled person
so agree with that big bird

Well, Ganymede is ignorant about the oestrogen treatment, surgeon or truck driver, just as ignorant and unwilling to inform himself/herself. A quick google search is all it takes ffs. He/she/it is also totally ignorant about what Ashley's parents have said about their own motives. Again, a quick websearch is all it takes. I am more worried about doctors spouting crap than I am about Ashley's loving parents taking decisions on her behalf.

She isn't going to 'get better'. That, at least her own doctors, who know her and treat her, agree on. She is nine and has not progressed one jot from three months (probably earlier as her parents aren't sure she recognises them).

Thanks jj! That's one of the best emails I've ever received.

That was rather a together moment! He can be like that a lot though.

Peachyclair, I wasn't for one moment suggesting parents of SN kids should fight for a revolution. The rest of us who have rather more spare time (like, more than none) should. The funding and provision of social care in the country is a disgrace. And it looks as if the US is much, much worse.

Ganymede, I suspect there's a cultural difference between US and UK medicine - can't imagine UK surgeons ever comtemplating this. US seems to be much more pro-intervention generally (a place where prestigious academic hospitals advertise stop snoring ops and Botox).