this has thrown me. what do you think

[2shoescreepingthroughblood]

didn't want to put this in the news

I thought about starting a thread on this.

I find this so very difficult and complex, but I do have a lot of sympathy for the parents. that does not mean though that I think they are doing the right thing. I just don't know.

this is my problem. as we are having the beginning problems. BUT as I said it threw me.

I honestly don't know. I suppose I do wonder if there is absolutely nothing less drastic and more reversible that could be done. I suppose historically as well, disabled people have been sterilised without consent for eugenic reasons, so I can see why disability right bodies would be uncomfortale with this. But then her parents are thinking through what would be best for her.

it does seem a bit drastic to me, a mate was told her DD could be given medication to stop her having periods if needed

OJ - it seems that it's felt there would be too much a thrombosis risk with medication as this young woman spends so much time in a wheelchair

It's a really difficult one isn't it? When The Ashley Treatment was in the news earlier this year I very much empathised with the parents. Whilst that doesn't mean that I would choose the same for my dd, I certainly wouldn't be rushing to judge the parents.

It must be so hard for the parents. I actually worked with a girl with CP at ICI. She held down a fulltime job, drove, eventually got married and had a baby. No one ever thought she would manage but she did. Each person is different and i think somehow I trust the parents to know their own child the best above all others.

OJ can you give me info on that please(although I am sure it will be covered by nurses at some stage)

oh right i must have missed that
it's a difficult one and the parents will have their DDs best interests at heart

dunno what the med was just that the pead had said it was an option for her DD

are there not risks with a hysterectomy though.
i am not judging by the way. the parents situation is one i might someday be in(although dd is very bright and no the same as their dd)

I read this in the Times, and it said that Katie "understood very little of what was said to her".

I don't know much about CP. I have taught some children with CP, and they didn't have a problem with understanding (apart from hearing difficulties).

What might be the issues here?

www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/10/08/nwomb108.xml

sorry there is a brief mention of medication in this article on the same case from the Daily Telegraph, but not in the Times article.

Ooh - that read badly. Sorry. Obviously hearing problems didn't cause understanding problems per se...

dh & I were discussing this & neither could decide. I would hope above all else that the DR's & parents are able to make the best decision for the daughter without a media frenzy influencing it.
It can't be a decision they would take lightly given the risk associated with major surgery.

TellusMater dd goes to an sn school which mainly haS dc's with cp and I have to say most of them have some understanding of what is being said. even the most severe.
(dd understands EVERYTHING)

times article here

The understanding thing is very important in this surely? When you are making a decision for someone else?

I wonder if ti is just the reporting ?

talk about contradicting. if she has little or no understanding, why would she embarrassed?

Perhaps it's just ignorant reporting 2shoes. The BBC story doesn't say anything like that.

But, as I said, a teenager who does understnad what is going on...

Hard.

I also think this is a difficult one!
I have known mums of severely disabled girls who say that their daughters will pull off and throw around sanitary towells because they are not used to having them on on a daily basis.
This is obviously embarrasing to the parents/carers who are out with them at the time and anyone in the firing line .
My daughter is 18 and has c.p. but is purely physically disabled she gets awful cramps and heaviness as did I.
Each case has its own merits but i wonder where it will end? circumsicion for randy teen boys with learning difficulties/disabilities?
When my daughter went for her college assesment they told me that they expected ALL the girls to go on the pill/injection .
As for Scope getting involved isn't that the organisation who got rid of all their disabled workers then gave their top bosses a pay rise a year or two ago????? .

With reference to this one comment made in the original article posted:-

"There's lots of non-disabled women who also experience discomfort in their periods".

Hmmm. Well I am one such woman who experiences discomfort, however, my "discomfort" (hah) is caused by endometriosis. If Katie did have excrutiating periods and heaviness as a result of endometriosis (and or fibroids) she could not express her pain to the doctors. I would argue that many women have problems trying to get doctors to take such issues seriously let alone a woman with more complex needs.

Her parents have my every sympathy; they deal with Katie every single day along with many other parents of disabled children. These people have likely not had a great deal of outside support over the years; well not without much discussion in order to receive it.

I think in this one i am on the mothers side. My ds has severe diahoreah and when you are changing nappies etc six times a day, this would only add to the pressure for the carer. The operation may mean 4-6wks of some discomfort for the child, but compared with possibly 30 years of monthly period pains, five days of bleeding, mood swings and hormonal changes etc is it not the best option. She doesnt need the periods. Shes never going to have children so i think the mother is being very pro active in her role as a carer.

Presumably this girl has severe learning disability which would explain her not understanding, not CP only.

Its a tricky one but then her parents must have been making medical decisions for her for years. I've done the same with dd who doesn't understand cos she's only 3.
I expect their fear is also what will happen to her once they are gone. She will be a vunerable young woman in a possibly indifferent care home. If she can't speak and her learning disabilites are severe she's never going to be able to report sexual abuse and pregnancy could kill her (thrombosis, c-section etc)plus what happens to the baby?
I think this sort of thing should be a case by case judgment and Scope (aren't all their directors ablies?) should butt out. Toomany disability groups are run by either able bodiedpeople or those whose impairment is physical. The learning disabled rarely have a voice and when they do its from their parents. Those parents will be experts on their daughter and will know what she can and can't cope with and understand.
And I didn't hear the media standing up for parents with learning disabilites who havetheir kids taken away anyhow.