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Old 01-06-2007, 09:01 AM   #16
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Originally posted by verte76
I approve of what these parents are doing. They are trying to give their child some normalcy in her life, something that can make her part of the family. I'm handicapped myself and the whole thing is hard. If you can make it any easier, do it.
I totally disagree!...........They made these changes to put some normalcy in their own lives, NOT the childs!
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Old 01-06-2007, 09:10 AM   #17
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How is removing her sexual organs, breasts, or ability to age physically even remotely close to some normalcy?

I can't imagine the effort needed to take care of a handicapped child but after thinking about this story for more than five minutes, I'm genuinely, absolutely disgusted at her parents.

What kind of fucking precedent does this set? My god, that's the truly disturbing part. What kind of precedent does this set for future cases involving a child similarly handicapped, or even less handicapped?
Totally,totally agree with you,what more can i say......... except that more help is needed for people in their situation ,they should not have to feel they need to take these sort of measures in the first place, governments and society should not sweep the diabled and impaired under the carpet !!!!
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Old 01-06-2007, 10:59 AM   #18
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Obviously not the same situations, and I don't want this to turn into another thread about her-but how come nobody seemed to say that Terri Schiavo was nobody's business, on both sides of the issue?

Aren't they both situations revolving around questions about ethics and quality of life and caregiving ? Again, I'm not saying they are comparable in other aspects.
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Old 01-06-2007, 11:35 AM   #19
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Originally posted by MrsSpringsteen
Obviously not the same situations, and I don't want this to turn into another thread about her-but how come nobody seemed to say that Terri Schiavo was nobody's business, on both sides of the issue?

Aren't they both situations revolving around questions about ethics and quality of life and caregiving ? Again, I'm not saying they are comparable in other aspects.
No, the Terri Shiavo case was never like that, at least not in the legal sense. For the media, yes, but her case was who had the right to make that decision, the husband or the parents. That's really the only thing the courts should have been concerned with. In that sense, I always felt it WAS nobody's business but her husband's, her parent's, the court, and their lawyers. The media was where it got twisted into this whole life/death debate and whatnot. I bet there's a dozen Terri Shiavo's every day. I mean, we had to make the same call with my grandpa and he was never in the news. What originally made her case special was that her parents were contesting the husband's right to make decisions as her next of kin.

I don't really know how to feel in the case of this child. I don't know enough about medicine or caring for the disabled to make any sort of informed opinion. To me, the surgeries seem really drastic, painful, and invasive, but I don't understand enough about her condition or her family's health history to start saying her parents are evil. This child can't even sit and has the brain of a baby. I can't imagine what it's like caring for someone like that, so I think it's quite rude to be passing judgment.
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Old 01-06-2007, 12:06 PM   #20
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OK, they did it to put some normalcy in their lives--as parents. But this child is never going to have an adult life, and taking out her uterus and breasts is going to make it easier for them to manage her. As a handicapped person myself, I understand that this stuff is not an individual case, it is a family case. You have to make things manageable for the parents. That's an issue that must be addressed. I'm sorry, I have to disagree with you about the rightness of this surgery. I think it's completely justifiable.
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Old 01-06-2007, 12:15 PM   #21
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Originally posted by MrsSpringsteen


Aren't they both situations revolving around questions about ethics and quality of life and caregiving ? Again, I'm not saying they are comparable in other aspects.
No, in my view what we are dealing here is an issue of consent and how far that can be extended.

I guess I'm just not convinced that in this instance the parents are acting in the best interest of the child. It is certainly an arguable point.
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Old 01-06-2007, 12:18 PM   #22
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Well of course it makes it easier for them to keep her like that, but isn't that in the interest of helping her- to such an extent that it's not selfish? The alternative is the care that others could give her, and who is to say what that is and if that is best for her?

I'm just personally uncomfortable judging them, but the whole situation still raises larger questions.
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Old 01-06-2007, 01:01 PM   #23
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As a mother who actually went through this with her child, I can say with all certainty I would do whatever it would take to make this child and the parents life more manageable.
My youngest son was diagnosed microcephalic very early on in infancy. He was an infant all his life (12 years) My husband and I went through every conceivable test trying to find out what or how this happened. I have 3 younger sisters and we had to find out if this was a genetic factor. We never found out, it just happened. In the 80s there was even less help for disabled citizens than there is now.
My day began at any hour of a 24 hour period. He began having seizures at about 17 months and that meant even more doses of medications and late night monitoring. He ultimately had to be tube fed which I learned to do myself because he wasn't gaining weight
Bathing 1 to 2 times every day was an ordeal in itself since every fold, nook and cranny had to be clean to avoid any further complications. There is a whole host of care one has to give a child or adult in a mental/physical state such as this, and it has to be done once or twice daily. I assure you it is a very difficult life. We also had a very active 3 year old son at the same time who needed our attention just because he was 3.
I didn't/couldn't work outside the home because there were no facilities that helped with children with the severity of his condition. I wouldn't have had the energy anyway. Even nursing homes, if we could have afforded one and come to terms with putting him in one, didn't accept children like Paul.
This type of condition affects the temp control area of the brain, every illness even a slight cold could spike a 106 degree fever that would send us rushing to the hospital at any given time.
He was the epotime of 24/7 care, but he was the most beautiful blond hair blue eyed boy and he and his brother are still the loves of my life. Everyone that was part of his life felt blessed to have known him. He died in 1993 in the hospital from complications of the flu.
With this said, if he had been a girl and I had the options of doing what these parents have done, I would. It horrifies me to think of what a maturing girl, and even the parents, would have to endure. and everyone is right, you had to have been there to know why someone would make this type of decision.
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Old 01-06-2007, 01:34 PM   #24
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Thanks for the info and insight Sue.
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Old 01-06-2007, 01:48 PM   #25
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Sue thank you for sharing. It sure adds a much needed perspective to this discussion.

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Old 01-06-2007, 03:24 PM   #26
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Thanks for your post Sue. My first reaction was that it was wrong for the parents to have taken this course but on reflection I don't think you can really comment on their decision unless you've been in a similar situation yourself. I've got one child with minor physical and mental disabilities which take some time to manage but I can't imagine what it must be like to cope with a severely disabled child. The last thing those parents are is selfish.
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Old 01-06-2007, 04:14 PM   #27
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Thank you Sue, I'm so sorry about the loss of your son. I admire you so much for the incredible care you gave to him.

It is so easy for everyone to make comments about this girl's (and any similar) situation when they have never been in the parents' position. Just a general comment, not directed at anyone here.
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Old 01-06-2007, 11:07 PM   #28
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Thank you so much for sharing Sue You say he was a blessing in your life, but don't forget that you were a blessing in his. You are a wonderful loving and nurturing mother.
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Old 01-07-2007, 01:51 PM   #29
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Quote:
Originally posted by Liesje


It really depends on the person, but I can't imagine how it would be more normal for someone with the mental capacity of a toddler to have to experience "grown up" things like yeast infections, gyn exams, having periods every month (most likely involving very painful cramping, migraines, mood swings/depression, bleeding that she would never understand or be able to take care of on her own), and the additional threat of health problems like breast cancer, any type of reproductive cancer or cysts, etc.
Uhmm...I don't know about that...I work for an agency that provides support and services for developmentally disabled adults so they can live in their own homes in our community, and one of our clients is a female in her 30's w/ the mental capacity of 1 1/2 to 2 years. She seems to handle the female stuff ok.

Of course, staff have to make sure to get her in for regular checkups and so on, as her communication skills for indicating pain or discomfort are limited to pointing and saying "ouch".

I must admit that what the parents had done to/for their child
makes me uncomfortable. The historical treatment (early 20th century esp.) of the mentally (and physically) disabled is full of similar actions, "done for their own good" or to keep them from reproducing, etc. There were abuses...now there are laws against these abuses, and laws to protect their rights. Sometimes these laws are ignored...
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Old 01-07-2007, 02:28 PM   #30
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Uhmm...I don't know about that...I work for an agency that provides support and services for developmentally disabled adults so they can live in their own homes in our community, and one of our clients is a female in her 30's w/ the mental capacity of 1 1/2 to 2 years. She seems to handle the female stuff ok.
Yes, but I'm assuming this person can actually sit up, hold her head up, maybe talk a little bit or at least communicate with facial expressions? That's not the case for the person in this article. She is menatally and physically an infant and always will be. She can't even sit or hold herself up. There's no chance she can take care of personal hygiene, let alone live in her own home with assistance. We're talking about a baby the size of an adult.
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