This is wrong on so many levels I can't even begin to get my thoughts out and written about it!

http://www.foxnews.com/story/0,2933,241279,00.html

Goodness, I just don't know. I mean, this is one of those times when you almost have to be in her parents' shoes to make a wise decision. It seems to me they were very much trying to give her the best life possible.

Ahhhh it's really hard.

Words from a parent in the trenches.....I have to concur with the parents and the doctors. The parents' concerns are very legit. In times past, the child probably would have died by now, and it would be a moot point. As it is, her mind is already a child forever and when such a person grows into womanhood, the risk of sexual assault is very high. In groups, she will be exposed to men who have the raging hormones and the lack of maturity to control themselves. Unfortunately, far too many developmentally disabled girls and women lack sufficient protection from the society.
Because I am interested in the topic, over the years I have kept track of the exposed stories. There have been cases of the football team tricking the disabled girl to agree to be gang raped; the girl suffers emotional and physical trauma, including permanent damage, so even tho she says "yes", she was unable to comprehend the consequences.
When my daughter was in therapeutic riding, the staff was adding up the cases of girls who went to assisted living homes, and wound up pregnant, and their parents were raising grandchildren as a result. There were 3 in our very small county. UNACCEPTABLE!! :onfire: At least this child will be spared their fate..

What's not clear from the article is whether medical personnel initially recommended these procedures as a way of prolonging life or whether the parents decided to have them done off their own backs and then sought approval - ie whose idea was it. I'm not convinced that preventing a child from maturing is right, regardless of physical and/or mental disability. If they are trying to keep her child like to reduce health risks due to her medical condition that raises the question of quality of life and whether they are trying to keep her alive for the sake of it.

I understand the sterilization part, for the reasons expressed in the article and in the blog.

I guess the rest of it is just well, shocking to say the least.

I'm sure that in the future we will probably see more "Ashley Treatments" being done and in 15 years it will become a norm for children in the condition.

Words from a parent in the trenches.....I have to concur with the parents and the doctors. The parents' concerns are very legit. In times past, the child probably would have died by now, and it would be a moot point. As it is, her mind is already a child forever and when such a person grows into womanhood, the risk of sexual assault is very high. In groups, she will be exposed to men who have the raging hormones and the lack of maturity to control themselves. Unfortunately, far too many developmentally disabled girls and women lack sufficient protection from the society.
Because I am interested in the topic, over the years I have kept track of the exposed stories. There have been cases of the football team tricking the disabled girl to agree to be gang raped; the girl suffers emotional and physical trauma, including permanent damage, so even tho she says "yes", she was unable to comprehend the consequences.
When my daughter was in therapeutic riding, the staff was adding up the cases of girls who went to assisted living homes, and wound up pregnant,
and their parents were raising grandchildren as a result. There were 3 in our very small county. UNACCEPTABLE!! :onfire: At least this child will be spared their fate..

:yeah:

I don’t think this is shocking, I think these are caring parents doing their best to make sure that they can continue to care for their daughter.
The biggest fear of most parents of a disabled child is what will happen to the child if they can’t cope any more.
Most carers have severe back problems caused by the continual lifting involved in caring for someone disabled. This child weighs 65lbs this is dead weight because she has no ability to hold on, can you imagine the effect on your back of just lifting this child in and out of the bath every day, not to mention all the other lifting involved in her care.
I also think their care has been amazing; she has no pressure sores or chest infections, not an easy thing to manage with a child as disabled as this.

I also concur with the parents and doctors. Sounds like Ashley has loving parents who want to be able to care for her and do the best they can for her. When you read and hear of what some humans are capable of doing to other humans and animals, their precautions for their beloved daughter make a lot of sense to me. I've also heard many stories of these special young women being exploited and abused. I can only imagine how much safer and happier this young woman will be as a result of twenty-first century thinking.

I think they're just trying to make an absolutely horrible situation a little bit better for everyone. It is kind of unnatural, but they're not playing god any more than the parents of children who are naturally stunted and give them growth hormone.
I don't think that it will become any more common than her condition is, which is really not at all.

And, I absolutely cannot stand all the disabilities "activists" who are freaking out about it without ever having met her, her parents, or having any kind of actual medical knowledge. Every time someone wants to make someone else's quality of life better, someone goes screaming about how soon all the ADA act things will be revoked:onfire: Makes me batty.

I don’t think this is shocking, I think these are caring parents doing their best to make sure that they can continue to care for their daughter.
The biggest fear of most parents of a disabled child is what will happen to the child if they can’t cope any more.
Most carers have severe back problems caused by the continual lifting involved in caring for someone disabled. This child weighs 65lbs this is dead weight because she has no ability to hold on, can you imagine the effect on your back of just lifting this child in and out of the bath every day, not to mention all the other lifting involved in her care.
I also think their care has been amazing; she has no pressure sores or chest infections, not an easy thing to manage with a child as disabled as this.

I agree with Anne, I would say they did what they thought was best for her and themselves. Careing for a disabled child is very hard.

I'm really torn on this one. On one hand I can see why the parents thought that this would be the best option for their child, but on the other hand I am reminded of what occurred in the 1940's and 1950's for group homes for the mentally ill and disabled. Sterilization was the norm, and the patients weren't given a choice. This little girl brings up a whole host of medical ethics issues that haven't been discussed in a long time.


I'd really like to know more about this rather than one blog entry and a short news story. I want to see the medical ethics review of the situation. I want to hear the arguments made, and see the defense.

I've been reading some of the news articles from local resources, and what kind of ticks me off is the number of people angry with the parents for what they consider "convenience" alterations. That they've removed her uterus because it's more "convenient" that way -- never mind that she can never voluntarily choose to have children, or that now she'll never have to deal with menstrual cramps (that she would be incapable of articulating). That they've stunted her growth to make it more "convenient" for them to carry her. Both my parents worked with mentally disabled adults my entire life, and let me tell you, even at 65 lbs she will never be "convenient" to carry; a fully grown adult, incapable of aiding their caregiver, would be very, very difficult to lift and carry around, particularly as her parents age and (as has already been pointed out) as repeated lifting takes a toll on their backs. Realistically, there's nothing "convenient" about Ashley and her parents' situation, and it seems to me like her parents are trying to make the best of things. Given that the patients my parents cared for were more or less dumped on the system by families who could not or would not care for their disabled children, I think it's applaudable that Ashley's parents are doing all that they can to make her life more comfortable. Do these alterations harm her in any way? No, I don't think that they do. Do these alterations help her? According to these articles, I'd have to say, "yes."

I just saw a TV report about Ashley, with photos, on CNN International. She's supposedly at the same developmental level as an infant, so I do have a lot of understanding for her parents. They want to be able to care for her themselves, which is admirable.

I have read the article and the blog and found this story very interesting. I have absolutely no problem with what the parents choose to do

I can see where the OP is coming from because until I read the full article I thought it sounded inhumane and bizzare. Now I think the parents and the doctors must have put a lot of thought and prayers into their decision. As far as their motives, I believe it is for their daughter's benefit. Otherwise they could have put her in an institution.

I'd like to comment again on the remarks (not from people here) that these decisions were made for the `convenience' of the parents.

I agree with what others have said that this is in no way going to make caring for this child more convenient, but I have to say, if it makes it a little easier, a little less stressful, if it gives them a little more time from the back (and heart) breaking work they undertake every hour of every day to care for her, then that is not a bad thing.

These people have by necessity given up their lives to look after their daughter. I know that this is what you do for your child, every parent gives up life as they know it to some degree upon becoming a parent. But the degree of involvement these two have in their life is absolute. They probably have little to no time for themselves, to work on their relationship, to take time out and cherish their own lives, to nurture themselves, to read a book, to go to a movie - to do any of the things that contribute towards quality of life, not just moving through life one day at a time.

People scoff at the importance of quality `self' time. People point the finger if you say you need to have time for yourself, they say you are selfish and lazy. That is not true. Everybody requires alone time, time to enjoy themselves, time to relax and unwind, time to recharge, time to look after themselves. It's a NEED, not a luxury. I would say that these people devote just about their every waking minute to this child, and get little to no time just for themselves, individually or as a couple. So many people will dump on these parents and say that they are just trying to make their own lives easier - when those same people would not change positions with them for all the tea in China. It is hypocritical and ignorant to criticise those who live a life that nobody would choose to live in a thousand years. Ashley's devoted parents should be warmly congratulated for their efforts for their daughter, not coldly condemned.

They are to be applauded for doing everything in their power to make their daughter's life as comfortable, risk-free and happy as possible. They have devoted everything they have to her - a huge sacrifice and one that cannot be quantified by anyone who has not been in their position.

I am convinced that their actions were first and foremost to give their daughter her best chance at a comfortable, happy and healthy life, and if as a `side-effect' these changes happen to make their lives a little easier, too - well, as far as I'm concerned, they deserve it.

I don’t think this is shocking, I think these are caring parents doing their best to make sure that they can continue to care for their daughter.
The biggest fear of most parents of a disabled child is what will happen to the child if they can’t cope any more.
Most carers have severe back problems caused by the continual lifting involved in caring for someone disabled. This child weighs 65lbs this is dead weight because she has no ability to hold on, can you imagine the effect on your back of just lifting this child in and out of the bath every day, not to mention all the other lifting involved in her care.
I also think their care has been amazing; she has no pressure sores or chest infections, not an easy thing to manage with a child as disabled as this.
I fully agree with everything you've said Ann. I watched it on the news this evening and i really felt it for the parents.

I really dont know what to say.
Gods Will should decide when and how Ashley X goes.
The parents have taken drastic steps to keep their daughter living and for as long as possible. No one would call them bad parents for that, but IMO I look to a higher power and see his glory as a way to heal the hardship, not always medical science. Although she is at an infant stage, if she were my daughter she would continue to mature into a women. Like I say that is IMO and becuse I do not care for anyone who is diabled I do not fully know what all is involved.

The parents of Ashley are not bad people, they have done something that they truly feel is right for their daugter. The whole "convience" thing is really a terrible way to look at it. I am sure that the parents did not decided to do what they have done for purely "convience" but they are caring adults who researchd what they were putting Ashely through.

They aren't preventing her from dying. They're preventing her from growing. There is a huge difference.

I'm glad you said "if it were my daughter" though, because no matter which way people feel, that's the most important thing to remember. Their child, their lives, their decision. Some of the crazies (both sides) on TV seem to think they're everybody else, and can therefore make decisions for them, when they usually have no experiences of their own. Pllh.

This is a sad story all round:( .I think the parents having full parental right over what happens to their daughter is wrong....on principal.Nobody should have the right to decide somebodys whole life,especially when that person cannot speak for themselves.The decision should have been made by a court.
If the parents think that by effectively 'spaying' their daughter will stop anybody making sexual advances on her,they are sadly mistaken,Paedophiles make a point of working in environments with vulnerable people exactly like that.
I'm in no position to judge them in any way.....Thats just my view on a couple of the 'issues'.

Why should a court do a better job of deciding what is best for her? They actually know her, and furthermore, the court does not have to deal with any of the consequences of the decision either way. When there are good people, with good intentions, and good advice, courts are entirely unnecessary. Nobody disagrees with what they are doing except random people who've never met them, and IMO the medical concerns of a private family are not public business. (I don't mean that now that they have made the choice to make it public that nobody should talk about it, I mean public in the sense that the court can tell them what to do, that the opinions of the community should override those of the people directly involved).

Personally, the avoiding sexual abuse thing sounds really absurd to me, as soon as I read that I wondered why anybody ever brought that up at all. You're right, furryferals, I'm not sure that it does anything to reduce her chances of that.

Wow! I am surprised no one has a problem with this. :confused:

I guess it's just me but to make a child go through all of those procedures on the chance it might improve her life.

I can understand about the sterilization but why at such a young age?

I'm not saying that the parents are bad people and I realize they are doing what they think is best for their daughter but the other procedures just seem like mutilation to me....

Why should a court do a better job of deciding what is best for her? They actually know her, and furthermore, the court does not have to deal with any of the consequences of the decision either way. When there are good people, with good intentions, and good advice, courts are entirely unnecessary.


I am not saying they made the wrong decision or a court would have made a better one.What I meant was, I disagree with people making decisions on peoples futures on principal..as a whole.Especially behind 'closed doors' This leads to abuses of peoples human rights.
Everybody should have the right to have all concerns put equally and fairly before a court,wether that be a private court or not.The girl should have had somebody representing her and just her best interests.Parents are not always the best people for that.
This case is just one.That the details would have been kept secret otherwise.

There are many people in institutions not able to speak for themselves but are aware of what is happening but can't communicate,and I wonder how many are having the same 'decisions' made for them.

http://ashleytreatment.spaces.live.com/
If you haven't read this site created by Ashley's parents yet, I highly recommend it! Before she received the "Ashley treatment", her case was reviewed by a 30 member ethics committee at the hospital; all the same learned experts who would be testifying in a court hearing, if one were held. If it were a legal issue, I'm sure that the ACLU would be all over this in a heartbeat- wouldn't be surprised if they do get involved.
As for the sexual abuse standpoint, yes, pedophiles and other sickos might be a threat, but if she did develop into a woman's body, esp. with large breasts, that would get her additional unwanted sexual attention from a much larger portion of the population. Many men and older boys wouldn't ever "stare & think" about a developmentally disabled child but when that child hits puberty, that can and does change.
I'm pleased to read the compassion in the posts here - it gives me hope that the world can indeed become a better place for those less able to care and defend themselves. :sun:

not everyone who sexually abuses a disable person or any female does it becuse they have breasts. Perversion works in ways you cannot predict nor always comprehend.

i dont know if i agree with this. I guess it was there choice. however....

but just stunting her like that will not stop perverts

I started puberty at around 8 years of age, with my period showing up when I was 9. Had I been mentally disabled, I doubt I could have dealt with that in anyway, whatsoever. I had a hard enough time as a highly intelligent 9 year old, who knew exactly what was happening and how to handle it (my mom was in the hospital, having a hysterectomy at the time). I think the parents were thinking about their daughter and the best way they could find to make life less complicated for HER.


I can understand about the sterilization but why at such a young age?

In the article, it mentions that she was showing early signs of puberty and that's when they decided to do it.

Three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of estrogen to stunt her growth. Fox News - http://www.foxnews.com/story/0,2933,241279,00.html

I am not saying they made the wrong decision or a court would have made a better one.What I meant was, I disagree with people making decisions on peoples futures on principal..as a whole.Especially behind 'closed doors' This leads to abuses of peoples human rights.
Everybody should have the right to have all concerns put equally and fairly before a court,wether that be a private court or not.The girl should have had somebody representing her and just her best interests.Parents are not always the best people for that.
This case is just one.That the details would have been kept secret otherwise.

There are many people in institutions not able to speak for themselves but are aware of what is happening but can't communicate,and I wonder how many are having the same 'decisions' made for them.

But courts are made of people... so all that would accomplish is taking the decision away from people who love her and know her (her parents) and giving it to different people who are strangers and sometimes are forced to do the wrong thing in one instance because they can't set the precedent for something that might be the right thing in another instance. Then, it does become not about Ashley but about everyone. Anyway, people make medical decisions for others every day in every hospital in the US. Husbands make them for wives who have been in car accidents, mothers make them for children who are brain dead from a fall, children decide that their fathers should not be operated on and should have pain control until they die naturally instead. The only time courts get involved is when there is no next of kin. I think that the panel of doctors making up the ethics committee were probably much more qualified than a single judge anyway. I also think they all did have Ashley's best interest in mind, else why do it?

Reading the article written by the parents stating their position provides a lot of insight into their reasons for making their decisions, and much greater insight into Ashley's condition than is provided in the brief, sensationalist articles I've been seeing online. Thank you for posting that link on p.2, catsknowme.

I strongly recommend reading the parents' article, as well as the comments posted at the bottom written by families who have children with similar extreme disabilities.

There are a couple of heartbreaking stories of parents who had to surrender their children into institutional care because they were no longer physically able to care for their child with the brain of a helpless, tiny infant, in the body of a 200-lb mature adult. Some of the parents endured serious physical injury simply from trying to hold their children and comfort them, as infant children need to be held and comforted.

Given the quality of treatment usually available in chronically understaffed and high-turnover institutional care, I agree that Ashley is much better off staying at home as long as possible.

If medical intervention can make that possible, as well as preventing the problems associated with keeping her uterus and breasts intact, when those organs have proven problematic for other mature female family members, then I agree with the medical ethics panel that approved the treatment - I believe that the medical intervention is for the benefit of this child.

I don't feel that I have the right to judge her parents as I don't look after a child with her condition. Sometimes it is so easy to judge others when you have not experienced what they are going through. I may have been shocked by this but I cannot judge them, because caring for her is probably more difficult than anything I have ever done in my life.

My cousin has cerebral palsy, he is a very intelligent guy working on his masters degree, and just what my aunt went through looking after him with "just" physical disabilities was herculean. His case of CP is not as severe us some but he needs a wheelchair to get around and help getting in/out of the bath. My aunt had to withdraw his younger brother from school (the school did not take disabled kids:onfire: ) and send him to the same school as his brother to ensure nothing happened to him. I can't judge her for this because I was not her position. My cousin and Ashley are not even comparable in disabilities as she is not cognizant of what happened, but I really believe that in situations like this walk a mile in their shoes before you judge.

Sorry I went off topic subject is just close to home for me.:(

When I was molested as a child I didn't have developed breasts yet- breasts have nothing to do with sexual abuse. Abuse is about power- not sex appeal. She's at an increased risk of abuse because of her mental and physical disabilities- it would be harder for her to fight and tell- just like it is for a child. All women have a 1 in 4 chance of being sexually assaulted. I am not about to advocate for all of us ladies to have our breasts and uteruses removed when we are kids "just in case." I read the blog/letter and I still believe this is gravely immoral.

This is a sad story all round:( .I think the parents having full parental right over what happens to their daughter is wrong....on principal.Nobody should have the right to decide somebodys whole life,especially when that person cannot speak for themselves.The decision should have been made by a court.
If the parents think that by effectively 'spaying' their daughter will stop anybody making sexual advances on her,they are sadly mistaken,Paedophiles make a point of working in environments with vulnerable people exactly like that.
I'm in no position to judge them in any way.....Thats just my view on a couple of the 'issues'.

WOW, that is just so wrong (IMO). Let the courts decide? The courts could care less about that child.

And yes, someone, the PARENTS that love their daughter should have the right to decide their daughter's life.

I pray fervently, that if I were in that position that is would be my parents or someone who knew me and loved me making decisions for me. NOT the courts of all people.

We need LESS government control in this country not MORE.

You have the right to your opinion of course, but this post just left me speechless and that doesn't happen often.

When I was molested as a child I didn't have developed breasts yet- breasts have nothing to do with sexual abuse. Abuse is about power- not sex appeal. She's at an increased risk of abuse because of her mental and physical disabilities- it would be harder for her to fight and tell- just like it is for a child. All women have a 1 in 4 chance of being sexually assaulted. I am not about to advocate for all of us ladies to have our breasts and uteruses removed when we are kids "just in case." I read the blog/letter and I still believe this is gravely immoral.

I totally agree with where you are coming from and the sexual abuse is not a good enough reason. abuse on any level can happen, what if there child was a male? I wonder what their choices in care and medical care would they have chosen then?

I totally agree with where you are coming from and the sexual abuse is not a good enough reason. abuse on any level can happen, what if there child was a male? I wonder what their choices in care and medical care would they have chosen then? Did you read the parents' website? It also talks about male children. Removing the breast buds was not done primarily to prevent sexual abuse, though that was a factor, but to make the girl more comfortable, e.g., when sitting, as she has to be strapped in to a seat.

I think a lot of you are getting completely the wrong idea about why this treatment was carried out.
It was to make the child more comfortable and to enable her loving parents to continue their exemplary care of her.
In his entire 9000 word blog http://ashleytreatment.spaces.live.com/
These are only the comments concerning possible abuse

“Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused,”

“Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.”

What dignity is there in having menstruation, when nothing else in her body functions?

I don't know how I feel about this case. On one hand I disagree with it on a humane and personal level, but then I can understand where the parents are coming from. As I parent, I do understand the basic thought of trying to do what I believe is best for my child.

To the father and mother of this child: Bravo! and Brava! respectively.

For the life of me, I can't imagine why anyone would think this is a bad idea and/or immoral. This was done to improve the quality of life for this child and I applaud her parents' efforts.

As the sister of a mentally disabled child, I can understand, although not fully, what Ashley's parents are going through. My sister has a developmental level a bit higher than that of Ashley, and even with her higher developmental level I have still watched the toll this has taken on my mother. I also know the toll it will one day take on me as there is no one else to care for my sister when my mother goes.

It's easy for us to sit back and condemn these people for putting their daughter through surgeries and estrogen therapy because it is not the norm. True, but her situation is also not the norm. They are not turning a normal girl who can grow up to be the President into an eternal child. Instead, they are helping an eternal child stay a child.

Perhaps instead we should be outraged of the use of estrogen therapy in the 1950s and 1960s when it was used for cosmetic reasons to have tall women remain short: http://www.umich.edu/~urecord/0607/Oct30_06/23.shtml To me, that seems quite a bit more immoral.

The argument goes that these parents could hire help when Ashley becomes too large for the parents to care for by themselves. I find that argument laughable and must have been said by someone who has never been within 10 feet of a disabled person. I have watched my mother fight the government for help with my sister. I have sat in awe of the waiting lists decades long to try and get my sister into programs that will help her. I have seen with my own eyes the government approve my sister for disability funds only to reverse their decision years later when my grandmother died and my sister inherited less than $5K. Even without her having a job, she was now considered to be making "too much money". This reversal mailed to us along with a bill to pay the govenment back every penny amounting to tens of thousands of dollars, due back to the government within a week. I have watched my mother sit in tears because she was at her wits end and didn't know what to do anymore. Help is laughable, and for those not in the system, a quaint notion.

At certain points, our only option available was to place my sister in a group home with others like her. I've visited these group homes and they are dire places. Girls do end up pregnant and unable to care for their children. They are understaffed, the assistance is usually minimal because of their budgetary problems, and the patients are crammed in like sardines. Would you put your child through that?

They also did not have her breasts removed to protect her from abuse. In her parents own words:

[Moderators: The following is quoted with permission. The parents' website says "We hereby grant you permission to use Ashley's photos and to quote from our article as long as you clearly give credit to and include a link to this web site: http://ashleytreatment.spaces.live.com/blog " ]

Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage; for example, an aunt had a breast reduction operation at age 19. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.

and

The breast bud removal has other benefits:

1- Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth.

2- Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

3- Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.


Abuse, to them, was a side note. The breast bud removal was done to prevent cancer, fibrocystic growth, and pain from having large breasts pushing down on her from constantly laying down. While they seem to be hoping it may help reduce the likelihood of abuse, this was not their original goal.

These parents took it upon themselves to not only improve the quality of their daughter's life, but also changed her future to one that has the possibility of being a good life considering her obvious challenges. She can be bathed, moved to the main part of the house to spend time with her family, her diapers changed easily. They took lemons and made the best darn lemonade they knew how... and how any of us can sit here in judgment of that is incredible.

I agree with everything you have said 100%. I respect you, your mother and your family so much for not putting your sister in the "home" you describe above. I admire you all to a degree that no words can describe.

Thank you for sharing your experience.

To the father and mother of this child: Bravo! and Brava! respectively.

For the life of me, I can't imagine why anyone would think this is a bad idea and/or immoral. This was done to improve the quality of life for this child and I applaud her parents' efforts.

As the sister of a mentally disabled child, I can understand, although not fully, what Ashley's parents are going through. My sister has a developmental level a bit higher than that of Ashley, and even with her developmental level I have still watched the toll this has taken on my mother. I also know the toll it will one day take on me as there is no one else to care for my sister when my mother goes.

It's easy for us to sit back and condemn these people for putting their daughter through surgeries and estrogen therapy because it is not the norm. True, but her situation is also not the norm. They are not turning a normal girl who can grow up to be the President into an eternal child. Instead, they are helping an eternal child stay a child.

Perhaps instead we should be outraged of the use of estrogen therapy in the 1950s and 1960s when it was used for cosmetic reasons to have tall women remain short: http://www.umich.edu/~urecord/0607/Oct30_06/23.shtml To me, that seems quite a bit more immoral.

The argument goes that these parents could hire help when Ashley becomes too large for the parents to care for by themselves. I find that argument laughable and must have been said by someone who has never been within 10 feet of a disabled person. I have watched my mother fight the government for help with my sister. I have sat in awe of the waiting lists decades long to try and get my sister into programs that will help her. I have seen with my own eyes the government approve my sister for disability funds only to reverse their decision years when my grandmother died and my sister inherited less than $5K. Even without her having a job, she was now considered to be making "too much money". This reversal mailed to us along with a bill to pay the govenment back every penny amounting to tens of thousands of dollars, due back to the government within a week. I have watched my mother sit in tears because she was at her wits end and didn't know what to do anymore. Help is laughable and for those not in the system, a quaint notion.

At certain points, our only option available was to place my sister in a group home with others like her. I've visited these group homes and they are dire places. Girls do end up pregnant and unable to care for their children. They are understaffed, the assistance is usually minimal because of their budgetary problems, and the patients are crammed in like sardines. Would you put your child through that?

They also did not have her breasts removed to protect her from abuse. In her parents own words:

[Moderators: The following is quoted with permission. The parents' website says "We hereby grant you permission to use Ashley's photos and to quote from our article as long as you clearly give credit to and include a link to this web site: http://ashleytreatment.spaces.live.com/blog " ]



and



Abuse, to them, was a side note. The brest bud removal was done to prevent cancer, fibrocystic growth, and pain from having large breasts pushing down on her from constantly laying down. While they seem to be hoping it may help reduce the likelihood of abuse, this was not their original goal.

These parents took it upon themselves to not only improve the quality of their daughter's life, but also changed her future to one that has the possibility of being a good life considering her obvious challenges. She can be bathed, moved to the main part of the house to spend time with her family, her diapers changed easily. They took lemons and made the best darn lemonade they knew how... and how any of us can sit here in judgment of that is incredible.
Thank you for sharing that with us. It's all too easy to condemn people's actions when you haven't been in their position. Reading about this case has reminded me of something that happened well over 25 years ago. My in-laws' tenants had a profoundly disabled adult son, and the father reached his breaking point, killed his son, and then committed suicide. It was incredibly tragic, but I don't think anyone asked "Why?". If that family had had better options, including making use of modern medical techniques to improve their son's quality of life, it might never have happened. :(

This is just another case of people who should have NEVER of become parents. I'm sorry that their daughterwas not born "normal", but this is just unethical. If this little girl was not "convenient" for them they should have given her up for adoption and given her a chance for a nornal life.

This is just another case of people who should have NEVER of become parents. I'm sorry that their daughterwas not born "normal", but this is just unethical. If this little girl was not "convenient" for them they should have given her up for adoption and given her a chance for a nornal life. What chance of a "normal life" does a person have who is at the developmental level of a three-month-old, and will remain that way for the rest of their life?

This is just another case of people who should have NEVER of become parents. I'm sorry that their daughterwas not born "normal", but this is just unethical. If this little girl was not "convenient" for them they should have given her up for adoption and given her a chance for a nornal life.

Normal life?

Unethical, according to who?

The procedures performed on this child passed a panel of 30 Ethics people I thought.

Who do you think would have adopted this child?

This is just another case of people who should have NEVER of become parents. I'm sorry that their daughterwas not born "normal", but this is just unethical. If this little girl was not "convenient" for them they should have given her up for adoption and given her a chance for a nornal life.

:onfire: Speechless :onfire:

I think the parents are very brave, and have done the best they can for their child.

Cheers, from
SwampWitch

OK I am not directing this at any one person in particular, but are people reading the blog?

I agree with ckblv.
Really, who would adopt her? It just seems so easy to judge when you are not facing the situation yourself.

Can someone explain "normal" to me. What makes one normal and what makes one abnormal?

And as the mother of a disabled child I can say things are hard for us no matter what we decide to do. Having a child with any disability is like walk down a dark tunnel not knowing where you are going or what you are supposed to do. If we decide on a particular treatment we get reamed from one side for doing it. If we decide not to do a treatment we get reamed from the other side. Walk a mile in someone else's shoes before casting judgment on someone else for the medical decisions they may make, whether you agree with them or not.

Can someone explain "normal" to me. What makes one normal and what makes one abnormal?

And as the mother of a disabled child I can say things are hard for us no matter what we decide to do. Having a child with any disability is like walk down a dark tunnel not knowing where you are going or what you are supposed to do. If we decide on a particular treatment we get reamed from one side for doing it. If we decide not to do a treatment we get reamed from the other side. Walk a mile in someone else's shoes before casting judgment on someone else for the medical decisions they may make, whether you agree with them or not.


Ping, thanks the comment you made about what constitutes "normal" and "abnormal"...I find myself asking myself this same question every day of my life!

I'm a special education teacher, and I happen to teach in a special school for children with severe and profound disabilities. For our students at my school, they are truly attending school in the least restrictive environment possible...accommodations and program modifications are simply not possible within their regular neighborhood programs, even when self-contained special education classrooms are available. In other words, we have the type of curriculum available, methods, materials, equipment, and instructional support at this school that would be unavailable to the children if they were to attend special education in a regular school.

While I actually do support the family's decisions for Ashley, I do think there are a few things I'd like to throw in, seeing as these children (and I've had more than a few "pillow angels" in my day, and I view them as far more functional, capable individuals than this statement allots) are my love and life's work. I truly believe Ashley's family are working with her best interests at heart, and that they are doing everything in their power to improve the quality of her life...as parents of this child, it is their decision to make.

However, in my profession (which has it's fair share of ethical decisions as well), I choose to operate under something called the "Theory of Least Assumptions." What this is, is an attitude for professionals working with children like Ashley. We assume nothing about the child we can't prove to be 100% truth. And let me say that there is no full-proof way to determine what her mental age actually is, her cognitive ability, her level of reasoning skills, and how much she truly processes throughout her day...there are literally no reliable or valid assessments psychologically or educationally to determine these factors. For all anyone knows, Ashley could be a fully functioning 9-year-old living completely in her own head, with a body unable to follow through with normal 9-year-old activities. I have seen many instances where children with severe and multiple physical disabilities acquire "learned helplessness", and resort to infantile behavior, simply because their physical challenges make it easier to elicit sympathy from adults, and adults tend to make things easier on themselves by doing things for children that they could be doing for themselves...the parents (who do truly know Ashley the best), kept stating that she was functioning in the 3 month-old range of cognitive ability...but really, know one can assume this is a fact. It just may be that no one has been able to truly reach what is REALLY happening inside of Ashley's head at this point...a common situation with children who have disabilities.

Also, I'd like to mention that I believe it ethical and appropriate for children with or without disabilities to have a broad array of life experiences...including the opportunity to grow up and experience puberty, and to opportunity to grow as adults. This is closer to what I perceive as a "normal" life experience for most of us, especially those of us who are not living with disabilities. I guess my only problem with the Ashley treatment, is that it was driven the assumption that it wouldn't matter to Ashley if she entered into adulthood or not...that just isn't a safe assumption in my book. I always treat my kids like they can hear and comprehend everything I say...because it would NOT be fair to them if for some reason I were talking to them like an infant (or talking about them in front of them to another person), and in their mind, they're saying, "But, lady...I know what you're saying!!! You don't have to talk to me like that!!! I may not move my head by myself, or move my arms, legs, hands, or feet, but I've been here all along, and I'm a kid like every one else in your class!!!!" And I would hate for Ashley to be yelling at her parents in her head, saying..."Mom and Dad...I can hear and understand what you're doing, and I DO WANT TO BE A GROWN-UP!!! I want to go to my highschool football games, and go to prom with my friends!!!!"

Ugh. I guess that's my only problem with any of this. It's one thing to want to hang on to your children and provide care for them (particularly if they are profoundly disabled), but it's another thing to let them go and experience life as it comes like the rest of us...do I realize that Ashley's experience will be different from most of ours? Sure!!! She has more challenges in 10 minutes than I've had in 10 years! But when we're talking about quality of life, this IS Ashley's life we're talking about here!!!

About group homes and people with disabilities. A lot of people have a lot of misconceptions about these facilities. Prior to teaching, I worked in several throughout my area. I've seen some that are dismal and poorly run, and there are others that truly provide individuals with the keys to independence, a social life, structure, safety, community integration, vocational opportunities, and lots of recreation and leisure activities! Now THAT is quality of life to many folks with disabilities...they're living on their own (or at least in a supervised place with roommates), they get to go out to eat, go to work (even if it is hand-over-hand assistance from a job coach), shop for their own clothes, help with making supper (and shopping for it!), interact with non-disabled peers, etc. And these opportunities certainly exist for individuals who function much like Ashley, and have severe physical disabilities, and profound cognitive challenges as well.

I don't know...now I'm rather torn. I still support Ashley's parents, and feel they are doing the best thing they can for their own situation. I have absolutely no business telling people what to do with their kids, unless it is clearly detrimental to the children. And they have nothing but Ashley's best interests at heart...and they obviously love her very much.

Just a few of my thoughts, I guess.

along, and I'm a kid like every one else in your class!!!!" And I would hate for Ashley to be yelling at her parents in her head, saying..."Mom and Dad...I can hear and understand what you're doing, and I DO WANT TO BE A GROWN-UP!!! I want to go to my highschool football games, and go to prom with my friends!!!!"

.

Well said ;).
About the quote I put up, on the other hand, she could be relieved that this will allow her to stay with her parents whom she knows and loves... It's all just so difficult...Part of me doesn't like it, part of me understands...In our state, there has been on going lawsuits about adult homes and services for the disabled, with waiting lists up to 7 years long. Faced with that, I could certainly understand why someone would consider this. I also wouldn't think that moving to a state with better services would be an option, if their job (and medical insurance), family and support system were where they live now. It's just so difficult...

Great post Ping.

after reading the story, reading the posts. And watching a interview with the family.
i can understand why they did it.

Itstill just leaves a very bad taste in my mouth.like sour milk, it still seems wrong.

I disagree with it. It seems to me that they are doing it primarily for themselves. I'm sure they can come up with some medical benefits to it, but I think the reality is that it's easier for them to walk into her room and see a "cute little girl", asexual, cuddly, sweet, innocent. I think the prospect of walking into her room and seeing a grown woman, an adult, prone on the bed, unable to move, frozen in place, is something that they can't handle, at all. I think they already know it would make them massively uncomfortable to see such a thing, and so they are keeping her small for their own selfish reasons. And I think it's wrong - to put her through a bunch of medical procedures like this just so they can be more comfortable with what she looks like. I realize some people disagree and that's fine, but I've thought a lot about this, there is a big thread about it on another board I go to, and my opinion isn't going to change.

This is a sad story all round:( .I think the parents having full parental right over what happens to their daughter is wrong....on principal.Nobody should have the right to decide somebodys whole life,especially when that person cannot speak for themselves.The decision should have been made by a court.
If the parents think that by effectively 'spaying' their daughter will stop anybody making sexual advances on her,they are sadly mistaken,Paedophiles make a point of working in environments with vulnerable people exactly like that.
I'm in no position to judge them in any way.....Thats just my view on a couple of the 'issues'.

I am not saying they made the wrong decision or a court would have made a better one.What I meant was, I disagree with people making decisions on peoples futures on principal..as a whole.Especially behind 'closed doors' This leads to abuses of peoples human rights.
Everybody should have the right to have all concerns put equally and fairly before a court,wether that be a private court or not.The girl should have had somebody representing her and just her best interests.Parents are not always the best people for that.
This case is just one.That the details would have been kept secret otherwise.

There are many people in institutions not able to speak for themselves but are aware of what is happening but can't communicate,and I wonder how many are having the same 'decisions' made for them.

WOW, that is just so wrong (IMO). Let the courts decide? The courts could care less about that child.

And yes, someone, the PARENTS that love their daughter should have the right to decide their daughter's life.

I pray fervently, that if I were in that position that is would be my parents or someone who knew me and loved me making decisions for me. NOT the courts of all people.

We need LESS government control in this country not MORE.

You have the right to your opinion of course, but this post just left me speechless and that doesn't happen often.


Yes,I have the right to my opinion,but it is NOT my opinion that decides my perspective on right and wrong.

Like I said in my previous post,Decisions like this(Decided behind Closed doors )only lead to abuses of peoples human rights.

I am in no way saying the parents of this child are wrong,What I am saying is NOT EVERY CHILD that is born into a situation like that has loving parents,and some Parents WOULD do something to the child that is not in the best interests of that child.

Not all children are fortunate enough to be born into a loving home like you ckblv.
Or like the child in the unfortunate position that she is.
Which is why I believe ALL people whatever their disposition should have their own
best interests represented in a court of law.
And yes some people may say courts don't give a stuff about the individual,but the
courts are NOT government bodies,Well,not in the UK or any democratic society that I know of.
The courts are made up of ordinary people,who have a great wealth of experience and are there to make an independent decision based on the facts and the best interests of the person involved.WITHOUT being emotionally involved.

I think it was the right decision for them. It was not any of our decisions to make so I don't think that it really anyones place to critize someone for making a decision like this. In no way is it playing God. I meen people get things like Cancer all the time. It doesnt meen we are playing God by being treated for cancer and living longer because of it. I dont know Im actually a little sickened by how nasty people are getting about this situation. Not necasarily on this site but people in general.

Furry, I disagree, I would WANT the people making decisions for me to be emotionally involved, for sure I would. I would want it to be my parents, or my brother. And I would assume they would be emotionally involved.
NO WAY would I want a stranger making ANY decisions about me.

:yeah:

The people who love you can often be clouded by emotional judgement, but still, it's emotion born from love and concern. I think in situations like custody settlements and so forth, where parents can reach the point where they just can't think straight anymore, then a court is probably the best place to rationally decide the issue.

But in a situation like this, nobody can ever be understanding enough, purely because to understand this situation they would have to LIVE it, to make the right decision. This little girl cannot speak for herself, the parents' record does speak for itself, and they were the right people to make the decision. Plus, it wasn't a snap decision made over the course of an afternoon's consideration - everyone involved spent a very great deal of time consulting, talking, thinking through the ethical issues - this was a long, hard decision to reach and ultimately, I think, the right one.

We spay and neuter our animals for their own benefit (and for the benefit of the ones who will never be born), 'imprison' them in artificial surroundings against their nature to keep them safe, and make the decision to put them to sleep to prevent them suffering. We keep them dependent on us for food, shelter and love and some animal psychologists say that this means they are perpetually in a state of infancy or at least adolescence. All this is considered ethical and right by the vast majority of people. And yet when it comes to doing the same thing for humans most people would cry out in horror and disgust, even when the human concerned cannot make any decision for themselves and the people who are responsible are doing it out of love and care. Yes, there must be safeguards, and that is what the professionals and the courts are for, but there have been too many cases of mentally incapacitated people being taken advantage of and living terrible lives for anyone to say that these parents are wrong in wanting to protect their daughter. I am not sure about the hormonal treatments to keep her small, but I can see why they consider that she would not be able to cope with a woman's body. Just my thought.

We spay and neuter our animals for their own benefit (and for the benefit of the ones who will never be born), 'imprison' them in artificial surroundings against their nature to keep them safe, and make the decision to put them to sleep to prevent them suffering. We keep them dependent on us for food, shelter and love and some animal psychologists say that this means they are perpetually in a state of infancy or at least adolescence. All this is considered ethical and right by the vast majority of people. And yet when it comes to doing the same thing for humans most people would cry out in horror and disgust, even when the human concerned cannot make any decision for themselves and the people who are responsible are doing it out of love and care. Yes, there must be safeguards, and that is what the professionals and the courts are for, but there have been too many cases of mentally incapacitated people being taken advantage of and living terrible lives for anyone to say that these parents are wrong in wanting to protect their daughter. I am not sure about the hormonal treatments to keep her small, but I can see why they consider that she would not be able to cope with a woman's body. Just my thought.
:worship:

I've often thought the one and only right that animals are granted that humans don't have is the right to be euthanased. Sure, they don't make the decision themselves, but ending unnecessary suffering is a right that all living creatures should have.

I think it's wrong - to put her through a bunch of medical procedures like this just so they can be more comfortable with what she looks like.
Despite your long consideration and discussion on your other board, you mustn't have paid much attention to this case if you think that her looks were the reasons behind this.

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

Update on this case... Though the "ruling" has no legal weight and they don't want to pursue any, the investigation has concluded it was a violation of state law to perform Ashley's surgery.

I don't find anything wrong with it. The child is better off and it will be a lot easier for the parents to care for her. I dont know if I could go through what those parents have. It would be tuff.

This is a hard thing or people to understand if they have never been in the parents shoes. I had 2 brother with Werdnig-Hoffman's disease or aslo called spinal Muscular Atrophy a form of muscular dystrophy.

Even though they never weighed more then 40 pounds I watched as my parents carried them around and saw how it got harder as the years went on.

They had braces they had to wear in order to sit up that were uncomfortable enough let alone if they had breasts. They had normal mental abilities in fact were very smart.

And also as a parent of a child with a disability I would do all I can to allow him to live at home. Nor would I want anyone to tell me How to take care of him.

There are many cases of people that do end up pregnant in these situations.

And as far as people thinking that its just prolonging life. Well of course a parent doesnt want to lose thier children and would do anything to help quality of the childs life. Is there anything wrong with it? That is a whole different debate.

These parents are only trying to do the best they can. And whats best for them not for everyone else who think it might be wrong.

I don't know if its been posted but there is an update in this case.

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

Apparently they broke the law in WAshington by sterilizing a minor without court consent.

We spay and neuter our animals for their own benefit (and for the benefit of the ones who will never be born), 'imprison' them in artificial surroundings against their nature to keep them safe, and make the decision to put them to sleep to prevent them suffering. We keep them dependent on us for food, shelter and love and some animal psychologists say that this means they are perpetually in a state of infancy or at least adolescence. All this is considered ethical and right by the vast majority of people. And yet when it comes to doing the same thing for humans most people would cry out in horror and disgust, even when the human concerned cannot make any decision for themselves and the people who are responsible are doing it out of love and care. Yes, there must be safeguards, and that is what the professionals and the courts are for, but there have been too many cases of mentally incapacitated people being taken advantage of and living terrible lives for anyone to say that these parents are wrong in wanting to protect their daughter. I am not sure about the hormonal treatments to keep her small, but I can see why they consider that she would not be able to cope with a woman's body. Just my thought.

Good point. Their daughter is like a baby. What would be the point of her having an adult body but baby's mind? And we spay and neuter pets who are normal, and nobody sees any problem wiht that.

Im not a parent so i cant say what it feel likes to have a disabled child. I saw this story on tv a few months ago and visited their website. On the one hand it shocked me that they decided she should have a mastectomy and hysterectomy at such a young age, and it was like taking half of what makes her 'her' away. It still creeps me out a little. But they obviousely want to spend their lives making sure she is looked after and that she lives for a long time, and they needed to make it as easy as possible. I really don't know what to think, im on the fence.