Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

but on the other hand, a father of a 15 yr old disabled boy with the mental age of a baby (who was interviewed on the radio) said he would never have opted for something that would have stunted the growth of his child.

I don't think there'll ever be consensus on the decision. I can completely understand Ganymede's argument (and I agree with him on most points) but on the other hand, I can feel the need of the parents to want and be able to tend to their own child's needs as best they can. As much as I don't necessarily agree with the decision, I can see why the ethics committee gave the go-ahead - they didn't want to deny those parents the opportunity to love and care for their child as best they could.

bigbird2003- its not a case of what we see and don't, we all just have differing perspectives and experiences that give a different asnwer. If it were that black and white- but it isn't, and God save me from a world where there are no differing opinions (or from people who think their opinion is the only right one)

two quotes from The Times yesterday (they did an extended article in T2)

The ifrsta nswers ganymedes assurance that the aprents admit they did it for convenience:

'A universal misconception about the treatment is that it is intended to convenience the caregiver: rather, the central purpose is to improve Ashely's life'

Now, whether you think this has beena chieved is one thing, but then to go and say they did it ourely for convenience and admit it is another.

also:

'i ahve a seven year old daugyter with Davetts syndrome. She is huge already and approaching precocious puberty. I totally understand why youa llowed the treatment to go ahead. My little girl ahs a mental age of 12 - 18 months, with little prospect of improvement, and if I had the option I'd do exactly the saem thing. To have a woman's body with the ability to conceive a child but the mind of an infant is a very frightening thought.'

there's another....

'I ahve a severely retarded [sic] first cousin, now 65, who thankfully has remained physically small: he's about 4 ft 6inches tall. This fact ahs amde all the difference in the world. He has always been cared for at home. his mother, now 86 years old, is still his primary caregiver. Had he grown into a full sized man my petite aunt could never have managed him physically. Our family loves my cousin dearly. he lights up our lives. But caring for him is physicallya nd emotionally demanding. had he grown up there would have been no option than to place him in institutional care, in which case he would probably not be with us today'

Imagine placing your disabled child into care. Your love for your disabled child is no different to all your other children, more than that you have structured the last X years around them, their neeeds. You have probably lost any social life you have, there's a big chance you haev no partner as so amny partnerships break down under the stress of a disabled child. Its not an option akin to 'convenience', its a heartbreaking decision some people are forced into. At lessewr levels of disability itisn't quite the same in that it can be possible to access very satisfactory sahred / supported accomodation, but thats not an option for Ashley.

BigBird I have a severely learning disabled child (who will require 24 hours care for life) and I can see that it could potentially be a good thing for Ashley (although like everyone here I don't have her medical history so can't say a definite yes or no), whlst it being something I would never contemplate for my son.

Those views are again from parents! Not from disabled children or adults. Yes it will be heartbreaking to send a child/young adult into care but at some point it will happen if that child/young adult lives to a ripe old age. At some stage, these parents will no longer cope due to their own ageing, regardless how big or how small this child stays. Maybe siblings will take over the care but one day the parents will have no choice.

I have read all there is to read on this case. Doesn't anyone else feel uneasy by these parents attitudes? They seem to be very misguided. The 'pillow angel' is downright patronising. And the part "We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We?re often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit." is just weird!

Does this child get to interact in a family or just spend time in her room 'with her pretty lights'?

How does removing her uterus and breasts desexualise her? If she has some hand movement, will this surgery take away any sexual feelings that we all are entitled to and stop her exploring these feelings? (regardless of how our body works) How will this stop a pervert from assualting her? She will still vunerable. These are questions that I'd like to see answered.

I'd also like to know where the line is drawn. A young man with a severe learning difficulty having his testicles removed(after all he'll never experience a loving sexual relationship) ??

Yes there are differing opinions on this highly emotive case, but I think surgeons, doctors and other disabled people are the ones we should be listening to

I really hope that is not true about people being unable to imagine love for a disabled child, aloha. I absolutely do not doubt Ashley's loveableness or her parents' deep love for her for a moment. That is not in question, imo. However, I don't think it necessarily follows that because Ashley's parents love her and want the best for her this surgery is in her best interests, tbh, though I don't know all the details. I think gannymede has made some good points. I do think I can imagine why Ashley's parents might want her to stay small and easy to hold when touch is her main mode of communication and comfort. But bigger bodies can still be cuddled and cradled and touched. I have also seen well trained, dedicated care workers, teachers, OTs, music therapists etc in action with profoundly disabled teenagers and adults and good, caring, valuable work can and does happen, though I accept that services are unacceptably patchy in the UK and it sounds like they are even worse in the US. Periods and breasts may or may not not have bothered Ashley too much- it's difficult to know as we are all so different. There are wedges and supports that can make people comfortable on their fronts even when they have large breasts. Good care homes and equipment may well be disgracefully thin on the ground in her area but it is possible that Ashley may anyway have to utilise these at some point if she outlives her parents or they become unable to care for her through old age or illness. From what I know so far about Ashley and her family- and i totally accept that is 1.not much, 2.based on hearsay 3.that i don't have to live their lives and 4.that they love and want the best for their little girl both now and in the future- I'm still not sure that the benefits will be likely to outweigh the risk of this surgery and ongoing treatment. I think it is very hard to predict accurately how Ashley will be affected in the future either physically or mentally or socially and therefore to know whether her quality of life will be better or worse. Does anyone know how lack of female hormones is likely to affect Ashley's moods, for example? I don't know enough about the relationship between female hormones and mental health but clearly they do play a big role in mood and wellbeing as well as sex and reproduction- look at how many women feel when oestrogen diminishes hugely at menopause. I really hope that suppressing the production of oestrogen will not have a negative impact on the way Ashley feels as she gets older. But my main niggle is that I really don't agree that vulnerable people should be forced to undergo radical and painful change because society is not set up for them. I really do wonder whether Ashley's parents would have made a different decision if they had always been able to access decent support and had an expectation that very high quality care would be available to their daughter in the future? If they felt that Ashley was a person valued in her community? If there was a fantastic care home in their hometown staffed by people who loved their jobs and would be likely to appreciate Ashley for the woman she will grow into?

I don't know. It's a massively difficult issue and I am only glad i do not have to battle with these issues for my own children. I hope everything turns out for the best for Ashley and her family.

But severely disabled young people are a world away from profoundly disabled young people. They're experiences aren't remotely the same. Decisions made for a profoundly disabled individual should never be broadly applied to the severely disabled population obviously.

I didn't want to comment until I read fully the parents' pov on this issue

and I have made up my mind

YES .. a resounding YES

good for them ..

I wouldn't think she has the coordination to explore her sexuality bigbird, neither do I think any of the people posting their opinions ahs the same level of disabiity as Ashley, if they did they couldn't post.

Why isn pillow angel patronising? I call my little ASD son my Temporary Angel- because his personality swings

The CARERS have to belistened to here, they are the closest thing she has to a voice, the only ones who really know Ashley.

Since when did testicles cause discomfort when lying on the tummy, or a monthly bleed (which is something i certainly find painful) or inhibit chest straps? I shall ask DH, possesor of fine testicles. hang on:

nope, testicles dont do that.

oh sorry that last post was in reply to bigbirds. Scummy I do agree with all the if's and buts and wouldn't it be better if society adjusted. I just don't think that will ever happen, and given that there isn't going to be a huge shift in the provision of services for Ashley then I don't know that I can categorically say its not in her interests to have the surgery. Realism vs idealism??? Perhaps I'm just cynical these days.

scummy, if Ashley had access to all that support etc then great, but apaprently in the USa acccessing a care home means signing Ashley over 100% to the state- there is no middle road of cuddling her whilst some helper moves her, or daily visits to a care home clsoe by- its either or which is really the saddest part imo. . If they cant care for her they lose their child- thats awful, but to me shines a light on why they did it.

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

There is so much ignorance. The treatment to restrict her growth is NOT depriving her of oestrogen. It is a treatment of oestrogen. She will NOT be 'pumped full of hormones long term', it is a very short treatment with no remotely serious side-effects. It can only make her life better.
Do you think your small baby would have had a better life with lifts and hoists and specialist beds than with your loving arms around her? No? Then why be so prejudiced as to deny that to someone else's baby, even if that baby is older than yours?

I think Ganymede has been very ignorant and/or lazy in not researching the treatment he is so quick to describe as damaging (it isn't). And has not in any way tried to weigh up the benefits (more physical contact, hugs, outings, far less risk of bedsores) with the negatives - some of which he has, frankly, just made up.

but ashley is not a small baby.

Ashley has no views on her treatment! She is, mentally, the equivalant of a small baby. By definition she cannot have views. Would you think it was in your three-month-old baby's best interests to have periods and be so big you could no longer carry her?

Her needs, interests and abilities are the same as a small baby.

What does "signing her over to the state" actually mean, though, peachy? I'm afraid I'm embarrassingly ignorant about how the US works. Does it vary from state to state? I can't believe that the families of profoundly disabled people in care homes across the US are routinely expressly forbidden from visiting? Are you sure?

they might be the same but that does not make he a baby. she is 9years old.

I would imagine the aprents would at least not get a say in where she lives, which would limit visiting possibilities wouldn't it? Especiallya s they ahev other children. I don't know if they'd be able to visit, I assume that yes but they'd lsoe legal say over her

Scummy I think she means that you can't have the equivalent of people coming into your home to help out.offer respite. Or they don't have respite services, or day centres (they won't have many here either if they carry on shutting them all).

I was shocked to discover that if/when ds1 goes into care we will no longer be allowed any say in any decisions about him. So presumably he'll be vaccinted immediately even though it may still be against our wishes, and we will still view it as potentially very harmful for him. And they'll buy his clothes.

They do here as well Peachy.

they do, but at least you get (theoretically) a chance to try with home help etc

Yes that's true Peachy. I was horrified to dicover that though. I actually thought that ds1 would grow up- off we'd trot choose a loving care home foor him, visit him and still be involved in all decisions about him. I realise now I was hopelessy stupid. And tbh I dread the day I have to hand him over. I do not trust the state to make the correct decisions for him. Apart from his special school staff (who have been wonderful), everyone else who has been involved in his care hasn't understood the remotest thing about autism, or his abilities. I'd say the vast majority haven't even seen him as a worthwhile human being. I wish he could stay at his school forever.

oh fio that makes me shiver. Why do you lose all rights over your child if you can no longer physically cope with them? It's really wrong.

Its sad when that happens, we would see patients come into the home from famillies who just couldn't cope, and i was few of the relationships that managed to really survive intact. A lot of it (ther relationships that manage to survive) is based on distance- American states can be so huge, it could be ohysically impossible for her to manage! We ahd clients from countries where there was no adequate care at all, where the aprents ahd cared for 30 years and in order to safeguard tjheir child ahd made heartrending decisions to never see their child again . They were the well off famillies who could pay the bills, goodness knows what happened to the poorer ones.

The units I've worked in- I can think of 2 I would recommend like a shot, one for severe SN young adults and adults where the care was amazing, and one for older people. I can times by ten the homes I wouldn't allow anyone I love to access though .