the "Peter Pan treatment"?

i think the discussion would have been very much the same as you see it here. and since she's in no position to make decisions for her body, her parents do it for her. there isn't a good side to any of it. only a lesser evil. when her parents pass, as well, she will be easier for someone else to care for. i think her quality of life will ultimately be better, even if the hows are repulsive.

 

That's really what I meant, she has no way of consenting or saying no to anything like that. Parents make choices for their infants when they're that young, and since she is still there mentally, they still have to make choices for her. And like KC said, this obviously is a very hard thing to do, and is kind of repulsive, but in the end her life will be better, and she will be with her family....

 

Yea, I'm sure it wasn't an easy decision for them to make. To be honest if she was that far off where she could never really think for herself then it was more then likely for her best interest. It's not like she was just a slow adult that could still function somewhat. If they really didn't care they could have just pawned her off on someone else instead of taking any kind of responsibility for her life what so ever. It really would be hard for her and her parents when she did get bigger, and as someone else said... there is that risk that if something did happen and she wasn't in the care of her parents she could be raped and inpregnanted... what then? Believe it or not there are assholes like that in the world that do that kinda thing to coma patients and people like that. It's fucking discusting to think there are actually people out in the world that are that sick and demented.

It is an awful sounding thing to do to a person, in this case it's not just any person. Honestly I think her life would be that much MORE awful if they didn't do the procedures.

 

this sounds terrible. but if the girl will later not reproach them what they did to her, maybe it's ok. rather than have her get very sick, it's better that way.

 

I can see why they did it, she can't hold up her head, walk, talk or hold a toy. I mean it may even be easier for her in the end. Do I think it's right that they did that to her? Yes and no. I truly believe they think they did what was right for her, and maybe being smaller will actually benefit her. But at the same time I dont think ethically or morally right. But then again i dont have children and I dont know what its like to have a child with that disease. And to make a choice of what would be best for her I bet wasn't easy.

 

I think the whole situation wouldve be muchly different if she was a he.

 

Well if she was a he then they wouldn't need to worry about the things that part of this operation was for... boys don't have periods and things like that. So it would make it a little different. They would probablly still want the child to be small though, nothing with that would change, I'm sure.

 

Im not that young!

 

I was just responding to the fact you said it would be different if she was a he...

 

^^ and I was gonna respond exactly the same to "it would be different if she was a he".

So u realize that the components of the operation that take care of the female parts are not applicable to a male. But do you agree that the parents would still wanna keep a severely disabled son small too, esp. too since men are heavier than women. If so than the "whole situation" would not be that different.

 

That just freaks me out, the thought of it, if its good for the child, i guess i can understand. but thats just really sad and a horrible thing.

 

As an advocate for the equal treatment for individuals with significant disabilities, I do not agree with the reasoning to this decision. In the field of Special Education and related fields, we promote SELF-DETERMINATION. There are sooo many alternative modes of communication. First they do a functional behavior assessment to determine what behaviors are used for communication. If they are appropriate (non-self-injury, etc.), then they would build communication around it. You can teach ANYONE life skills, regardless of how severe their disability is. If it was my child, I would have NOT done this. I would have taught her to pair her menstrual pain with a picture that symbolizes pain. I would keep this in her reach when she has her period. If she was unable to give the picture card, then she could press a button that would say, "I have cramps, I need medication." It's hard for me to not judge, but I think that the parents wanted the easy way out. There is adaptive equipment to move a person who can't move themselves. The fact of the matter is that we don't do these things to individuals without disabilities. She is a person and needs SELF-DETERMINATION just like everyone else.

 

What will happen when the parents get older and die?

 

I was an HTS (habilitation training specialist) for a 40 something woman with cerebral palsy. I, along with her late 60's mother, had to do everything for her, including help her through her menstrual periods. There are a lot of inconveniences, indignities, and unhealthy things that she has to deal with. This woman, though, was not so severely retarded that she couldn't speak for herself, and she often voiced her complaints about her period. It was just one extra totally unecessary pain in the ass for her and anyone that took care of her, she had enough problems to deal with and have to work through.

She was retarded, but not so much that she didn't feel guilty because she had to be taken care of. She knew enough to feel bad that her mother loved her so much enough to keep her out of an institution, at the cost of her OWN health (her mother had a plethora of her own problems from hauling her daughter's body around for 40 something years, because believe it or not, those lifts and adaptive devices do not work for everyone. They HAD them, but my client hated them.)

I would bet a large amount of money on the fact that had this woman been given a chance to go back in time and change the course her body would take in order to make dealing with her health issues later in life easier, she would do it in a heartbeat. It wasn't just about how hard it was on those who cared for her. It was about how SHE felt too.

 

The parents did what they thought was best for their daughter. Someone suggested flash cards or something to teach the child? She has the mental capacity of a 3 month old! She can't recognize her own name, let alone create mental concepts of cramps, fertility, etc. I don't think it is my place to judge anyone who is in that situation. And if the treatment keeps her with her family instead of in an institution? Then she is benefiting from it.

Peace and love

 

I strongly disagree with your statement that you can teach anybody life skills. I've seen first hand that you can't. I've worked with a young teenaged girl, whose only communication skill is through her *crying*. She can't hold anything, she can only slightly move her right hand, her only means of being fed are through a g-tube, etc. She could never connect a picture with pain or push a button. She is baby like, but less mobile even.

She is small for her age but she is DEAD weight. It's not easy to move her around, and she has to be handled carefully. I couldn't imagine caring for her myself if she was much bigger and she's still growing.

Now, this girl's life is torterous, in my opinion. She lives in pain, whether it's from a gtube infection, which she gets almost everytime her g-tube needs to be changed, sores from being not being mobile, constant fever, diaper rash, constant mouth problems, constant surgeries, etc. And now she's come to the age where she gets deal with menstrual pain. It's easy to say it's cruel coming from somebody who has never experienced constant pain or been around it, and this will never end for her! It's not fair!

It's not about self determination. They have, basically, no sense of self, because they can't do anything for themselves in any way shape or form. And they most certainly are not like "everybody else" not even close to the majority.

I can totally understand the parent's reasoning. I don't see it as selfish at all.

 

According to most infant development charts, infants develop sense of self when they are older than 6 months. So when development stops at 3 months? They never develop that sense of self.

Peace and love

 

Normally I would say this was really f*cked up. But removal of the breasts to prevent from breast cancer.. and her size would make it easier to take care of her like a child.. if she still has the mind of an infant. Sexually, this makes a lot of sense too. What if some asshole pervert found a beautiful, disabled girl? She wouldn't have anyway to explain it. Or if she was raped and got pregnant. That would be too much for her. I know these are shitty things to think about but they're still sick facts, and a lot worse than we intend to think of.