Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

Jimjams2 I get that it's about ticking boxes.

I still wonder though about the lifting issue. even though she will weigh less because of the "treatment" at some stage her parents will NOT be able to lift her. also these days you can get all kids of wheelchairs with different adaptions so surely one could have been found with out a strap across the bust.

Aloha- i think the "where will they be then" comments are implying that it's possible that Ashley could outlive her parents, not that her parents are likely to abandon her. The reality is that it is very possible that at some point Ashley will need to be cared for outside her family.

The very definitions of 'indignity' being used her are based on how you or I would feel. They are completely irrelevant here. You might as well say, 'how could you put your newborn in nappies and breastfeed them. I would feel mortified if someone did that to me'.

She IS a freak of nature (to use your phrase. She had not been made into one. Of course she will get grey hair and wrinkles. Her parents don't care about that. But even then, if they are still alive, they will be able to care for her in a way that is appropriate for her needs. With hugs and cuddles.
How has she suffered? She had one operation. I have had several operations. The 'suffering' was mild and transient. I have had a lot more pain from my periods over the years than the effect of one caesarean.
You have not addressed my points about the oestrogen treatment. You assert she will have suffered from it and have long-term effects. That is not backed up in any of the medical literature.
The side effects of being so disabled that she can never, ever move position voluntarily are likely to be pretty huge, and utterly dwarf any other considerations. The fact that she will be smaller will make her more mobile will almost undoubtedly have massive positive implications for her physical health and her happiness.

And nobody thought the world was flat either. That's another misconception!

Edam, I'm also glad you posted !

As the only male here and outnumbered in both gender and in my stance on the 'Ashley' issue I was feeling rather lonely.

Many thanks for supporting the view I'm making.

Exactly Aloha "where will they be then" Grrr. I always think those comments suggest that such profoundly disabled children are easy to throwaway- less loveable, don't quite matter so much- keep them until they become too much hassle then pass them on (who to, who to, who to????)

I still have no idea whether the decision was the right one or not- I don't think there is a right decision necessarily because no-one knows in advance what the outcome will be. Whether she'll have complications or not from the treatment. My objection on this thread is to the suggestion that the parents are doing it out of selfishness, and for only after considering how Ashley affects them (if they did that they would have been long gone- doubt they would have brought her back from hospital).

Edma, and a few others- there should be a revolution in support- yes pleease, i could do with someone creatig one, it would help me out massively atm. I've posted this on Sn before, but I will post here as I think its relevant to that post
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.
They are administering edications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?
They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.
They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.
They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.
They are struggling to keep a marriage together, because adversity does not always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive."
By Sue Stuyves

Btw, I strongly suspect that your boy will have lots of charms as well as oddities as an adult, jimjams. There are lots of lovely adults with autism out there and your boy has always sounded like a fabster who is getting the best of starts from you. Yes, it's hard to predict how he will develop and yes he may well need some support but I'm certain he will retain his fabness.

Sorry, missed the intitial bit from it- it was written in response to a claim that Sn kids didnt get enough help becasue their aprents didnt help enough at school. Which is like asking us to undertake a revolution iin services

Jimjams2 I can not believe for one minuite that anyone would ever think the parents are selfish. as you say if that was the case they would have given her away.
They sound like a loving family who have taken a very extreme course of action as it is the only one open to them.

2shoes - perhaps they hope she'll outlive them iyswim. It reallly depends on her life expectancy I guess. I do know of 60+ year olds caring for a 35 year old (although she can sit). They had to wait over 2 years for a special bed for her (I think to help with pressure sores and to make it easier for them to lift her).

I thought the breast thing was because she lies on her front a lot of time (really I do think we would need to know all the particulars of the case before being able to make an indvidual decision on whether it was thought to be right or not).

this has made me realise how lucky I am. as we have had no problems with equipment(just don't mention powered chairs) so I am a bit thick when it comes to the struggles of others.

iirc (and iirc from the articles I've read as opposed to the blurb) the breast thing was because huge breasts are the norm in their family, she ahs a lot of tummy time and the straps on her equipment are fixed over her breast area.

I think equipment is widely available here to a basic level in most cases (though there are bound to be failings), but in the US who is going to fund it?

Ah, such a progressive model of a company

country

I mean country

Great post Peachyclair. Very moving.

You know, Jimjams, I think many people assume the parents are doing this for themselves because they simply cannot imagine actually - you know - loving - a freak like this. So if it's not motivated by love (because freaky disabled kids aren't loveable) then it must be their own selfishness, eh?

This is from Harvard Medical Schools's website:
"Bedsores can lead to severe medical complications, include bone and blood infections, infectious arthritis, holes below the wound that burrow into bone or deeper tissues, and scar carcinoma, a form of cancer that develops in scar tissue."

it goes on to say that bedsores are far more common in those who are immobile (of course) and even more common in those who are incontinent.
The recommended preventative treatment? Moving a person at risk every TWO hours (night and day).
Such lazy, selfish parents.

Oh, yes, body weight is very important when considering bedsores. Children are far, far less at risk than adults, because they weigh less.

That is a common misconception I think Aloha- I wish I could find ghosty's story- will look for it- I've made her post it on here twice already!

Found it- from Ghosty - on another thread- being profoundly disabled doesn't make someone less lovable.

"Somebody recently told me a sad story about a funeral they went to. It was the funeral of a 3 year old boy who had been born with a chromosomal disorder that meant he never sat up, could never eat, never learnt to talk or walk etc. He had no quality of life at all. He lived longer than expected (they told his mother he would die before his first birthday). At the funeral the mother stood up and said to everyone that she knew what everyone was thinking. That they were thinking what a relief it must be. That the last 3 years have been terrible for her and that this is the best thing to have happened. She told them all that no one could possibly know how much she loved her son and how he had been the centre of her world. She said she would trade everything she owned in the world just to have one more day with him. Very sad She sounded like an amazing woman."

To be honest it was a misconception I suffered from - I thought her parents were saintly to sacrifice so much to get nothing back. Reading their blog, she brings them great joy and is very much loved. They want what is best for her, how can we second guess?

I dont think anyone has denied bedsores do pose problems, I certainly havent.

The answer to bedsores and other similar complaints regarding her ease of mobility is then in realm of what assistance her carers need, essentially its a political issue.

The points made that assistance can be hard (and costly) in America is a valid one, the answer however isn't to mutilate an otherwise healthy body to metaphorically 'fit in'. It's more to do with addressing the problem at source.

That of course isnt easy to acheive but tailoring humans to 'fit in' will allow the present inadequacies to continue.

Its the duty of society to provide a wheelchair to fit the patient, it isnt the duty of the parent to fit the patient to wheelchair.

Everyone up in arms with what the doctor said earlier.....why can you not see what he is saying? This surgery was not necessary. It wasn't to enhance Ashleys life. Adults with profound disabilties and learning difficulties do not end up lying in bed all day once they reach 5'2 or whatever. With hoists and decent seating, areas to lay, they can continue a decent existence. Nor is going into a carehome the end of the world, people are talking about them like they are dumping grounds. They are places that can give care and love (and yes I have first hand knowledge of this too) Someone earlier mention respite as a bad thing....an awful child respite comes in the form of hospices and foster famillies and they both give high standards of care and love

Why not give Ashley the hormones to stop her menstruating (implant or injections) She is pumped full of hormones now anyway

People against this aren't saying the parents don't love her. We are saying they are misguided and shouldn't have had this option. Ashley deserves to grow into a young woman regardless of her disabilities, She hasn't had one operation, she has had at least 3 (breasts, uretus and appendix) Maybe done at the same time, but she has had to endure recovery from each site.

Has anyone been on the forums of disabled adults (ouch for example) There are no 'fors' over there. Might make some people feel very differently. No one I know (that has a disabled or learning disabled child/adult) can see any positives for Ashley, it's for the parents.

Just as a matter of interest, I have read an article today by the mother of a 14 year old girl who has global brain damage. She understands very little 'apart from her own name', is fed through stomach tubes, wears nappies but is able to smile and pull faces when she is unhappy. Her mother wishes the treatment had been available to her when she was young enough. In her words "she is now 5'1" and weighs five-and-a-half stones. Every year, more doors close for her and no new ones open. As she grows, her life is being eroded."

Says it all for me really. Up until now her parents have succeeded against all odds in giving her some kind of life (for example she loved being taken on childrens' rides at theme parks but is too big for them now), and soon they won't be able to. "Trying to keep her active and stimulated gets harder every month". No wonder her mother wishes she could have been kept 'small'.

Thank you Bigbird2003 I'm glad someone can realise what I'm trying to say.

I wont tell people here what a work colleague said about the whole issue' it will offend and get misconstrued. But lets just say as a male in my 40's I did shed a tear and I'm not ashamed to admit it.