Talk about setting the disabled community back to the times when forced sterilization existed. I learned of "The Ashley Treatment" by watching Nancy Grace on Headline News (CNN) this evening. Nancy was just about in tears doing this show on the girl whose parents decided to stunt her growth and prevent her from growing into a mature female adult.
The blog her parents have set up mentions that Ashley started showing signs of early puberty at 6.5 years of age. Seems large breasts run in the family. Ashley cannot walk, talk, sit or stand - her diagnosis is "static encephalopathy of unknown etiology". She is tube fed and basically stays in the same position that they place her in, which is on a pillow so they dubbed her the "pillow angel".
 The blog states she can move her arms and legs and reacts to music, makes no eye contact and is in a special classroom that provides her with daily bus trips. Her parents note that she has the "same level of cognitive and mental developmental ability since about three months of age".
In 2004 they started a series of medical treatments at the Seattle Children's Hospital that the family called "The Ashley Treatment" as she is the only one that has been through this. "The combined hysterectomy, breast bud removal, and appendectomy surgery was performed without complications in July 2004."
The parents explain in the blog that it is easier to carry Ashley at 65 pounds, fit in a bathtub, plus the grandparents find it difficult to manage her at 65 pounds.
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)
I am not about to explot this child further by posting her photos online and am completely shocked and appalled by this treatment of a disabled child. Nancy Grace also mentioned that she has a family member who is disabled.Â
I can just imagine how the adult disabled community is feeling after reading and hearing about "The Ashley Treatment". It is like this family is ashamed that their daughter is physically and mentalled handicapped and wants to keep her childlike to make it easier on the family.
They claim they are loving parents, but to consider such procedures at such a young age and not give her the chance to grow physically as any other disabled person is just inhumane. How are people ever going to be accepting of the disabled community if families are acting like this and Doctors and Hospitals are willing to go to this length to satisfy a parent's need for keeping a child in the same physical state for the rest of their life.Â
I have not read the entire blog yet to see if Insurance picked up any of the tab of these procedures, but I sincerely hope not as so many people are in need of operations to stay alive and they have to endure red tape and approvals through insurance companies that this would be a travesty to have these treatments covered.
I am still in a state of shock over reading of this family. I have a sister who was born with a brain tumor and after several operations became blind as the result of removing the tumor. She was not developing and had to be given hormones. Last time I saw her was 12 years ago and she did not look like a grown woman, but that of a teenager or even younger. I believe she is about forty now.
I am also the parent to two children with autism. My ten year old is nonverbal and low functioning on the spectrum. He seems like a toddler with his behaviors and mental capacity. Last time he was tested they said he was below that stage, so I am just speculating where he is now, but that is not really important to me. I would never consider any type of procedure to prevent him from growing - all the men on my side of the family are very tall so I imagine he will have a growth spurt in a few more years.
An antipsychotic he used to take (Risperdal) causes weight gain, but he changed that medication due to other side effects and now takes Geodon. I have read on many of my autism yahoo groups of kids my son's age and younger who weigh over 200 pounds and the older kids are already at 6 feet tall. I doubt any of these parents ever thought about stopping their child's growth.
What about the adults with disabilities that are of the same condition as Ashley? Why can't society accept those who are different either in mental capacity or physical deformities? Why is it that communities do not want group homes in their neighborhoods? What do people fear from the disabled adults in this world?
Share your thoughts about this blog after reading these excerpts:
"Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices.  Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."
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The family goes on to condone this treatment by writing:
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 "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."
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 " 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."
"To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemo or radiation therapy) or more involved surgery (limb amputations or face reconstruction), than what the “Ashley Treatment†entails. We strongly believe that the benefits that we’re seeking for Ashley are not any less worthy than these other unfortunate situations entail."
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http://ashleytreatment.spaces.live.com/blog/
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Comments: 27
She is unable to use her power chair in the house because the doorways are not wide enough and this is true of every other house in our community. None of the bathrooms in our house have doorways wide enough, or sufficient floor space to allow either of her wheelchairs to enter.
My daughter will age out of the public school system next year. This will present us with our next crisis. There are no adult day programs in our area that provide transportation. My daughter cannot be left alone so we will be forced to hire a caregiver to stay with her. (As a side note, at this point we will no longer be able to take her as a tax deduction even though the expense of caring for her will likely increase.)
My daughter is on every waiting list for services available to the disabled. The waiting list for a community based living arrangement is 10 years long as are most of the others.
We have received no financial assistance of any kind from the government for most of her life. She now receives $400 per month from SSI. Medicaid does pay for her diapers which her previous insurer would not. This saves us about $60 per month or about $700 per year.
A recent newspaper article detailed the travails of a family with a disabled child with severe medical problems such as Ashley's. He is being forced from his home because the in home care he had been receiving is being withdrawn due to his age not his medical condition. The laws/rules that govern this sort of funding were written in the seventies. At that time far more children with severe disabilities simply did not survive into adulthood. Advances in medical care and treatment have allowed these children to live more comfortable and longer lives but social services have not kept up.
IDEA, the Individuals with Disabilities Education Act, was passed nearly thirty years ago. This is the law that governs most aspects of special education. It called for the Federal Government to pay 40% of the costs. Federal funding for IDEA is at its highest level ever at 18%. It has never been fully funded and the balance is coming out of your school property taxes.
If you truly believe that Ashley's treatment was wrong I challenge you to put your money where your mouth is. Call your congressman and insist that IDEA be fully funded as the law requires. Call your state legislator and insist that all programs serving the disabled community be fully funded as well.
Walk a mile in my shoes before you condemn me and those like Ashley's parents that deal with these issues on a daily basis.
What worries me is that now the genie is out of the bottle, and that there will possibly be parents LATER doing this for convenience's sake.
I will admit that after reading some of the blog comments and WM H comment here, I am more sympathetic than I was upon learning of this story. And like Melanie, I too am concerned with what lines/restrictions will exist for those seeking this type of treatment in the future.
Ashley, as with an infant's mentality, has received thoughtful care. Care that may VERY WELL prevent her from suffering the horror of sexual abuse at some future time by one of our society's sicker members.
I fail to see this as inhumane, or as a set back to other persons with disabilities.
Honestly, I'm torn so I'm erring on the side of the parents. They evidently love Ashley and are willing to care for her indefinately. They seem to be just assuring that they will be able to care for her in the long term.
And yes, the blog page says that the hysterectomy is to make sure she doesn't have periods, so that she does not have the discomfort involved with that. I know as a full grown woman that I have had months were I literally lay on the floor and wept with pain that wouldn't go away - can you imagine that happening to someone with a 3 month old brain?
"it is a pleasure to visit with her and sweet talk her and observe her innocent and genuine smile".
What exactly does that mean "visit with her" - does she not live there?
Also she does attend school, so why even bother with schooling if they are keeping her in an infant state? There is a photo of her smiling in a wheelchair looks like maybe she is going to school? How is it that she is always on a pillow at home but sitting up with support while at school and what does the aide and teacher have to say about all this? What type of class is she in and what are the supports included in the IEP?
Why is Ashley the only visible person in the photos posted? What type of sensitivity did she experience before this in her breasts and how did they know this if she is like a three month old?
"Additionally, since Ashley is fed by a tube, lets pull out those pesky teeth so there is no need to brush or see a dentist. Since her brain will never work any better, get rid of that too...she'll be less mobile because of the ventilator, but will be easier to move around on her pillow. "
"having arms and legs that will never walk or grasp a toy makes them unncesessary. Think how that will increase her ability to go places with the family: they can just pop her into a back pack and tote her around. Not only that, but the parents won't have to do nail care nor will therapists have to come and work with those arms and legs as they continue to contract and put Ashley at increased risk for skin breakdown. "
"Other things to remove and when:
Joint tissue if she suffers arthritis
stomach staples if she starts to gain too much weight
lower portions of legs (she can't walk)
lower arms ( she can't lift or hold anything)
You could always donate some of her organs for people who need it like lobes of her liver, a kidney, a lung, etc. There are people who are complete in their right minds and dying while your daughter is, as you say, only mentally well as a three month old. She won't know that she is missing them but the mother of four dying from renal failure sure knows that's what's wrong with her."
"Thank you! Thank you for setting the disability movement back by decades! Thank you for giving the medical community and "experts" permission to tell other parents they should manipulate their child's bodies if they have a disability. Thank you for advocating that parents keep their children in their own homes, not in institutions, as long as we manipulate our child's body so we can continue to care for them. Thank you for exposing how difficult it is to care for a child who has a severe disability without any mention of the reason why you made your decision to "treat" your child…"
"Should I remove my son's male organs so that he can't experience an erection or an orgasm as an adult? Maybe I should limit his hormones so he doesn't develop facial hair and therefore we prevent having to go through the male shaving ritual? God forbid one of my son's peers suggest we wire my son's mouth shut so he doesn't drool. When does it end? Where do you stop?"
I just wrote this on Mike's article: "It opens up a whole can of worms beyond this one case into eugenics and other Nazi-like treatment of children."
I find the decisions made by her parents, after the suggestions from specialists, to be humane and loving. So what if some of this makes it easier to care for her? What is the shame in that? It just ensures the care she gets can more easily be handled by those who would normally be unable to do so.
I admire these parents. They show love, care and understanding in an almost unbearable situation. Look at the pictures of Ashley. A beautiful child who is happy, much like a 3-month old baby can be happy. She can kick and move her arms and hands, feel excitement and boredom. Her life may be limited, however it is not limited to her, it is the only life she knows. She cannot know or understand the sacrifice her parents are making to ensure her comfort. All she knows is the happiness of loving parents and siblings. Is that not enough for one in such a position?
If the parents want to share about this why did they only show Ashley on their sie and not their faces, why if they are so adamant about what they did is the best treatment have they denied all requests for interviews - I know that Stephanie's article or a comment made reference to the Florida woman whose family and ex husband went through that ordeal where her feeding tube was removed and I did not get the correlation, but someone on the blog comments stated that at least that ex husband was on the news discussing why he did what he did and still advocating that it was right, etc. where this family is hiding behind their blog and blackening their faces but leaving hers there for all to see.
I cannot understand why they did it. It is like they would be too embarassed to lift a grown woman around. What about all the family members that have been doing this for generations for the disabled and those that got better after the therapies, etc. They just plop her on the pillow and leave her there to visit.
This did not help the disabled community one bit and now others will be following suit removing unneeded body parts. Why not ask those who are adults and disabled what they think of this treatment?
http://www.msnbc.msn.com/id/21225569/