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    Hello,

    I very recently found this board, and this is my 1st post. I’m a Mother of a MR/DD child a lot like “Ashley”, she is now 26 yrs.

    When she was growing into puberty I was concerned of the very same things “Ashley’s” parents were. But then realized that this was a normal occurrence for all women to go through regardless of what mental state they would be. Many people who helped care for my daughter, reassured me that when, or if, her period started, that, in their experience, it would be very little bleeding and for a very short time. (These are people who actually work with MR/DD people daily and for many years). By the time she turned 19 she still hadn’t started so I took her to my GYN for a check up. My GYN told me her estrogen wasn’t high enough for her to start a period since she was small (under 90lbs). By the time she was 21 she was up to 100lbs and did start. It’s very little and very short duration. I give her Midol if she seems cranky and all’s well. She doesn’t understand what’s happening to her that I know of, but who knows maybe something internal “clicks” on, we don’t know. And yes, I’m worried about some sicko sexually abusing her, but I also trust a “higher power” to care for her when she’s away from me.

    I also understand the care giving issue. I want to keep my daughter in our home for as long as we/she can. We’ve been through many caregivers and after 4 years of revolving door caregivers, we’ve found someone so wonderful, she’s been with us for 4 years and we feel so blessed. And yes, I still lift, carry, etc. my 100 lb daughter whose 5 foot, but we also have a Hoyer lift, wheelchairs, bath chairs, etc.

    My husband was very upset when he heard about this. He couldn't believe a real doctor would do this. We should not be able to force our MR/DD children to stay the way we want them if they can’t conform to our needs.

    This family would have been able to care for their daughter as she grew to an adult, as lots of families do. I personally could re-butt every excuse they give for doing this! As I've been down this road already, and yes my family has a history of breast cancer too.

    The thing that frightens me the most is the slippery slop this will cause with more families “making” their MR/DD children fit their caregiving needs. Believe it or not there are many blessing is seeing your children grow up even with MR/DD. It's amazing how well children and families adapt to normal changes!

    Kim

    Comment


      Originally posted by OSU fan
      Hello,

      I very recently found this board, and this is my 1st post. I’m a Mother of a MR/DD child a lot like “Ashley”, she is now 26 yrs.

      When she was growing into puberty I was concerned of the very same things “Ashley’s” parents were. But then realized that this was a normal occurrence for all women to go through regardless of what mental state they would be. Many people who helped care for my daughter, reassured me that when, or if, her period started, that, in their experience, it would be very little bleeding and for a very short time. (These are people who actually work with MR/DD people daily and for many years). By the time she turned 19 she still hadn’t started so I took her to my GYN for a check up. My GYN told me her estrogen wasn’t high enough for her to start a period since she was small (under 90lbs). By the time she was 21 she was up to 100lbs and did start. It’s very little and very short duration. I give her Midol if she seems cranky and all’s well. She doesn’t understand what’s happening to her that I know of, but who knows maybe something internal “clicks” on, we don’t know. And yes, I’m worried about some sicko sexually abusing her, but I also trust a “higher power” to care for her when she’s away from me.

      I also understand the care giving issue. I want to keep my daughter in our home for as long as we/she can. We’ve been through many caregivers and after 4 years of revolving door caregivers, we’ve found someone so wonderful, she’s been with us for 4 years and we feel so blessed. And yes, I still lift, carry, etc. my 100 lb daughter whose 5 foot, but we also have a Hoyer lift, wheelchairs, bath chairs, etc.

      My husband was very upset when he heard about this. He couldn't believe a real doctor would do this. We should not be able to force our MR/DD children to stay the way we want them if they can’t conform to our needs.

      This family would have been able to care for their daughter as she grew to an adult, as lots of families do. I personally could re-butt every excuse they give for doing this! As I've been down this road already, and yes my family has a history of breast cancer too.

      The thing that frightens me the most is the slippery slop this will cause with more families “making” their MR/DD children fit their caregiving needs. Believe it or not there are many blessing is seeing your children grow up even with MR/DD. It's amazing how well children and families adapt to normal changes!

      Kim

      Hi Kim. Thank you for your insightful post. It's especially important to hear from a mother who actually has a disabled child with a similar condition and has successfully worked through the challenges. It would have been great if Ashley's parents had the opportunity to meet with other parents in similar situations (yes, I'm assuming they didn't) or for those responsible for this decision to have at least sought the input of a parent like yourself.

      Many of us in this thread became disabled as children so we know that it is 100% possible to be loved, cared for and *gasp* lifted without growth attenuation.

      This is nothing that a little determination, creativity and adaptive equipment couldn't handle. My mother lifted me, boobs, uterus and all, well into my teens at around 90lbs too. Rehab. specialists can teach caregivers how to lift with minimal strain to the back and knees.

      Surgical growth attenuation is cruel, excessive and completely unwarranted in these cases.
      Last edited by antiquity; 2 Feb 2007, 2:22 AM.

      Comment


        Thank you, OSU fan, for your very real and knowledgeable take on this situation.

        Seneca, I have read and followed this thread throughout and agree with you on every single point.

        My first response on the day this was posted was complete and utter outrage and shock. I held myself, and have held myself for many days hence because I am trying to train myself to stop and assess situations before I react.

        That said, I will say this:

        When I was 6 months pregnant with my daughter, who just turned 13 yesterday, I took a test which, at the time, was sanctioned and advised by the State of California to see if my child might have Down's Syndrome, or some other serious condition. Unknown to me at the time, my Doctor chose to do other tests which I did not give him permission, or authorization, to do. He came back a month later and said that there was a 'good chance' (60 percent based on his unauthorized tests), that my daughter would be born with Down's Syndrome. I immediately took offense and asked him what he expected/wanted me to do about this 'outcome' and he stated he wanted to know if I was willing to abort her based on these conclusions. I flipped out and said a definative "NO." I was very pissed that he did these tests without my knowledge and permission to begin with, to assert or encourage me to kill my child based on their outcome, to me, was out of the question.

        My daughter was born 13 years ago yesterday without complication and, not only does she NOT have Down's Syndrome, she has proven to be a very intelligent and gifted student. The thought that I, as her mother, could have chosen to abort, i.e. KILL her before her birth based on the Doctor's conclusions, had I been naive and culcable is so scary I shudder and think it's a great thing that my grandfather taught me, by example, to study and assess every decision for myself.

        Ashley did not have to undergo this horrendous surgery and intrustion into her body to facilitate the needs of the few. I am appallled, and disheartened, by this situation to say the very least. The fact that the conclusion of a 'body' of people may have long range implications into the life of my loved ones, and others, is catastrophic.
        Do not live your life in fear of your own government because the moment that you do, is the moment they rule you.

        Me

        Comment


          And sadly now, all pregnant women are going to be encouraged to routinely have a test for Down syndrome which is far from 100% accurate. How many babies without Down syndrome will be aborted? How many babies with Down syndrome will be aborted that if there was time to fall in love with them would have been welcome as part of the diversity of human experience?
          Ashley is a little girl worth knowing about:http://www.ashleyx.info

          Comment


            Originally posted by antiquity
            I agree Wise. This is such an awful and gruesome violation of her little body. I really, really don't think people would be so quick to approve this if she was not disabled. I've maintained that throughout. IMO, a lot of what is being expressed is the ableist pecking order that Cspan referred to. This is a very dangerous and slippery slope and why those 72 human and disability rights organizations are outraged.
            Antiquity,

            In my opinion, the doctors and parents are not just on "a very dangerous and slippery slope". They have skiied down the slope to the bottom of a deep chasm. An earlier post suggested that the parents used the term "pillow angel" to describe their child. I sincerely hope that they did not use this dehumanizing term. If I were a doctor involved in the case, I would feel deeply discomforted by the term.

            The procedure is much more than neutering. This is a massive manipulation of hormones of a retarded child that not only eliminated her sexuality but stunted her growth and probably had significant effects on other organ development, including the brain. As pointed out, the consequences of such hormonal manipulation are not known.

            I know some people have suggested here that IRB approval was not required for this procedure. I think that IRB approval should have been required for this procedure. It is unquestionably an experimental procedure. All experimental procedures should be reviewed by an IRB for medical risks and benefit, for the protection of the subject.

            It is ironic. If this same procedure had been proposed as a treatment for reversing mental retardation, it definitely would have required intensive review by the IRB and probably the FDA (because some drugs were used). Why should the intent of a procedure determine whether it should be reviewed by the IRB and FDA? If it had not been reviewed by the IRB, I think that it is wrong.

            Wise.
            Last edited by Wise Young; 1 Feb 2007, 11:22 PM.

            Comment


              Wise,

              The parents coined the term "pillow angel" and yes this is what they call her. Other parents are also referring to their children who are similar to Ashley as "pillow angels". From the parents' blog "We call her our 'Pillow Angel' since she is so sweet and stays right where we place her usually on a pillow."

              A 44 person ethics board was consulted, but no IRB. There are many (including me) who have asked for further clarification why an IRB was not involved. To date this has been the response

              "According to Kristina Borror, a director for the federal Office for Human Research Protections -- where many complaints about Ashley's treatment have been registered -- the office does not consider the 2004 procedure to be a research case, and the situation is therefore outside of its power. Dr. Richard Molteni, medical director of the Children's Hospital and Regional Medical Center in Seattle where the procedure was performed, said that Ashley's case was not experimental and therefore did not require consultation with an institutional review board."

              How this little grl and this hospital stayed under the radar has to be addressed so this never happens again.

              Susan
              Ashley is a little girl worth knowing about:http://www.ashleyx.info

              Comment


                Originally posted by antiquity, in another thread
                Anyway Lynnifer, just hope and pray that your niece never has children.
                Devil's Advocate here...

                I am wondering with the level of outrage in this thread where the line should be drawn as far as rights of the disabled goes. Should the profoundly mentally disabled be given the same rights as normally-abled people without regard to their ablity to comprehend their rights? Should the mentally ill be segregated to a level of wishing that they do not reproduce, but it would be ok for those that have non-functional minds to have the ability to reproduce? I am confused where the line should be drawn, is it all or nothing, or is it dependant on the situation?

                Comment


                  Everyone has an inherent right to human dignity and worth no matter what their disability. You do not have to understand your rights to be afforded them. With rights come responsibilities. Some people need guardians to protect their rights.

                  In the case of Ashley, I think her rights and the rights of her parents were in conflict and she should have been provided a guardian ad litem (one who would represent her interests and her interests alone.)

                  If you demonstrate an inability to be responsible- such as in the case of caring for a child - you can be deprived of the opportunity to raise that child. We do not remove people's rights in anticipation of them being irresponsible.
                  Ashley is a little girl worth knowing about:http://www.ashleyx.info

                  Comment


                    Originally posted by Andy
                    Devil's Advocate here...

                    I am wondering with the level of outrage in this thread where the line should be drawn as far as rights of the disabled goes. Should the profoundly mentally disabled be given the same rights as normally-abled people without regard to their ablity to comprehend their rights? Should the mentally ill be segregated to a level of wishing that they do not reproduce, but it would be ok for those that have non-functional minds to have the ability to reproduce? I am confused where the line should be drawn, is it all or nothing, or is it dependant on the situation?
                    Well, if I had known that my statement would be taken out of context I would have elaborated. In that case, it was stated because there's the potential for child abuse especially with her not taking her meds. My concern was for the welfare of the children she might have, it was not a statement against her right to have children.

                    As PD said below:

                    If you demonstrate an inability to be responsible- such as in the case of caring for a child - you can be deprived of the opportunity to raise that child. We do not remove people's rights in anticipation of them being irresponsible.
                    Last edited by antiquity; 2 Feb 2007, 6:39 PM.

                    Comment


                      Originally posted by Andy
                      Devil's Advocate here...

                      I am wondering with the level of outrage in this thread where the line should be drawn as far as rights of the disabled goes. Should the profoundly mentally disabled be given the same rights as normally-abled people without regard to their ablity to comprehend their rights? Should the mentally ill be segregated to a level of wishing that they do not reproduce, but it would be ok for those that have non-functional minds to have the ability to reproduce? I am confused where the line should be drawn, is it all or nothing, or is it dependant on the situation?
                      Andy,

                      Why do you feel the need for a "line to be drawn"? The mentally retarded and mentally ill have fundamental rights as humans. The right to be sexual, to reproduce, and to grow and develop are fundamental human rights. Neither parents nor society should take these rights away arbitrarily.

                      By the way, ability to comprehend rights is not required for having rights. For example, a person may not be able to read but this doesn't mean that the person does not have rights. A child, an ununconscious person, a person who is asleep, a person who cannot comprehend English, and a mentally retarded person all have rights. Their mental condition and inability to understand their rights does not deprive them of their human rights.

                      Why shouldn't the decision to sterilize somebody with mental retardation or mental illness be made with the same safeguards and protections as a decision to sterilize somebody who is able-minded and bodied. The wishes of the person should be part of the decision, if possible. When it is a child, discretion should be practiced and the minimum necessary procedures should be done. By the way, it is illegal to forcibly sterilize anybody, including criminals.

                      You ask "Should the mentally ill be segregated to a level of wishing that they do not reproduce, but it would be ok for those that have non-functional minds to have the ability to reproduce?" Your question implies that you believe that many or some of the people with mental illness and retardation don't have functioning minds. This is simply not true.

                      I ask you to please consider what you are saying carefully. I urge you to reconsider your question. How do you know that people with mental illnesses and retardation don't have any minds? How much mind does one have to have in order to have children, to have sex, or the freedom to grow? Does a mother have to be physically or mentally able to care for a baby in order to have one?

                      I am also surprised that you bring in the question of mental illness. In the 1950's, one study suggested that 81.5% of the population of Manhattan have signs of mental distress. More recent studies suggest that 22-23% of the U.S. population have diagnosable "mental illness" (Source). About 3% have addictive disorders and 28-30% have either a mental or addictive disorder. 5.4% of adults are considered to have a "serious" mental illness (SMI) that interfere with social functioning, including schizophrenia, bipolar disorder, obsessive-compulsive disorders.

                      Between the 1920's and 1970's, there were several large-scale attempts to sterilize people with mental illnesses in the United States, leading to one of the most shameful periods of U.S. history. Due to the ignorance of people concerning the nature of mental illness, thousands of people were forcibly sterilized, often based on little or no data. The sterilizations were often done in secret, without the knowledge of the person or parents.

                      Wise.
                      Last edited by Wise Young; 5 Feb 2007, 9:58 PM.

                      Comment


                        Originally posted by Wise Young
                        Does a mother have to be physically or mentally able to care for a baby in order to have one?
                        Is this a rhetorical question?

                        C.

                        Comment


                          Originally posted by Tiger Racing
                          Is this a rhetorical question?

                          C.
                          It is both a rhetorical and a serious question that was asked with the intent of soliciting an answer. It is rhetorical in the sense that I hope that it would stimulate reflection. However, it is a serious question that I hope people would try to answer.

                          The answer to the question is no. A little reflection should convince most people that our society does not require a parent to be mentally, physically, or socially fit in order to have children.

                          One example is the huge number of drug addicts who have children. The "crack baby" is a very common phenomenon. Do we forcibly sterilize these women and surgically remove their sexuality? Why not? Why is it okay to do so to Ashley?

                          Another example is a person with spinal cord injury having a child. While a person may not be able to take care of a child physically, it does not mean that the person should be deprived of the opportunity and right to have a child.

                          Wise.
                          Last edited by Wise Young; 5 Feb 2007, 9:54 PM.

                          Comment


                            Originally posted by Wise Young
                            Andy,

                            Why do you feel the need for a "line to be drawn"? .
                            Wise, I'm not looking for a line to be drawn, I was just pointing out in a questioning format how someone in one thread seems to be expressing such outrage almost to the point of obsession about the reproductive health of a severely mentally challenged individual but then in an other I saw that person wishing someone suffering from an apparent case of bipolar would not reproduce. Nothing more, nothing less.

                            Comment


                              There is a difference between wishing and negating the possibility of reproduction. I dearly hope my son never chooses with another person to become a parent, but it is HIS choice. I do not believe I have the right to take away his choice.
                              Ashley is a little girl worth knowing about:http://www.ashleyx.info

                              Comment


                                Originally posted by PDnemesis
                                There is a difference between wishing and negating the possibility of reproduction. I dearly hope my son never chooses with another person to become a parent, but it is HIS choice. I do not believe I have the right to take away his choice.
                                Originally posted by ANDY
                                Wise, I'm not looking for a line to be drawn, I was just pointing out in a questioning format how someone in one thread seems to be expressing such outrage almost to the point of obsession about the reproductive health of a severely mentally challenged individual but then in an other I saw that person wishing someone suffering from an apparent case of bipolar would not reproduce. Nothing more, nothing less.
                                Nemesis and Andy,

                                I understand.

                                Nemesis, I have fortunately been blessed with intellectually gifted children who have not had to fight the cruel biases of people or society. I have also been lucky to have taught remarkable students who understand that they have to work hard to contribute to the world and that the world does not owe them anything.

                                I have known many people with cerebral palsy, severe brain damage, neurodegenerative diseases, mental diseases, and mental retardation. In all cases, they not only have minds, desires, and feelings but are much more cognizant of their situation than people give them credit for. In my opinion, those who say that people like Ashley don't have minds should not be in the positions of making ethical decisions concerning their futures.

                                Andy, the ignorance and bias of Americans amazes me. I have now been in the United States for close to 40 years and am an American. The last decade has made me less confident of the American public and the political leadership of this country. It is sad because the rest of the world is looking to the United States as an example of a rational policy that is good for people.

                                Wise.

                                PS... I removed some political commentary from my post. Sorry. Wise.
                                Last edited by Wise Young; 6 Feb 2007, 2:45 AM.

                                Comment

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