Parents Under Fire for Keeping Daughter a Child

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!! 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.

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 Makes me batty.

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 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.

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.

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.

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

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

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 ) 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.