Unreal article on something you probably won't believe parents would do [Archive]

Lara

11-08-2006, 03:41 PM

Oh my. This makes me want to cry. :(
This sort of thing is outrageous.
Here's the abstract below.

available Abstract (http://archpedi.ama-assn.org/cgi/content/abstract/160/10/1013)
Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Vol. 160 No. 10, October 2006
Attenuating Growth in Children With Profound Developmental Disability

A New Approach to an Old Dilemma

Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH

Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.

milivica

11-08-2006, 04:00 PM

Believe it or not, I don't disagree (or agree)...it would depend on the situation.

For a kid like Vince, I would say no way. For a kid like my sister, it might not have been a bad idea. I don't know where she is now, I assume in some asylum - at about 14 she started changing, by 19 I tried to let her live with me, but I was only 23 myself. You could just be sitting at dinner, and WHAM she'd come at you with a HUGE knife cause 'the green lady in the wall told me to'. She was often crying cause everywhere she looked she was stepping on dead bloody mutilated bodies, some of them would grab her...I found that out when I asked her why she was always so b!tchy. She's ask questions like "how come when I went to California last night Uncle Gunner flipped it (california) upside down". The bigger she got, the harder it got, the scarier it got. She'd have phases where she was dead set on getting pregnant...her mom (we have different mom's) tried to get her tubes tied, some nurse said something as she was on her way to surgery, she flipped out and her mom didn't make her. She was the only sibling I am close to (of the others they are dead and in jail). Nice family aye! You should have seen our get togethers. Yeesh.

I don't think altering people without their full understanding would ever be right, but I could understand why you'd want to make your daughter unable to get pregnant. Weather it's right or not, I don't know. I really don't. The hormones to keep her small, that's a new one, I really can't wrap my head around something like that. I would think first it would have to be considered weather the girl would have a realization that she is smaller than everyone else...I mean even toddlers look forward to getting 'bigger'. I can't say it sat well with me, I'd just have to know a lot more about this to have very strong feelings about it. The reasoning behind it was just not very explanatory, they kind of made it sound like a practical convenience which of course would be dispicable.

Pamster

11-08-2006, 04:06 PM

I understand the not wanting a female with a severe developmental disability to have a baby isn't offensive to me since I would be hard pressed to make such a decision. It does sound like its all about practical convenience doesn't it? That is what I found to be really obscene is that they would do such a thing for utterly selfish reasons. :(

Braindrain

11-08-2006, 04:45 PM

"not wanting a female with a severe developmental disability to have a baby"
is one thing. But, deliberately stunting her growth, just so she can "stay a
child" all her life?? What happens when the parents are dead? Who's going
to "take care of her" then? They're not thinking about what's best for her,
they're thinking about what's "easier" for themselves.:( :mad:

Pamster

11-08-2006, 04:52 PM

I didn't want to be the one to say that Gina, but it's exactly what I was thinking. It's just barbaric and inhuman to impose such a fundamental injusitice upon a innocent child who won't know any different but still should have rights that parents want to see respected, not taken advatage of. :mad:

Lara

11-08-2006, 05:47 PM

I guess it's not just me is outraged then. This is appalling. This happened in Wash. state??? Where else is this going on?

If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment.

Good grief. What other sort of damage are they doing by doing that???

It better not be going on here, or the Prime Minister is going to hear about it pretty darn fast.

silentmiaow

11-08-2006, 05:53 PM

Actually, attempts to keep developmentally disabled women from having babies (which this is more than just that) I do think are wrong, in part because, the rationale is usually that this somehow protects them from sexual abuse or its consequences. Actually, it protects them from the sexual abuser ever getting caught, which is dangerous.

Lara

11-08-2006, 05:54 PM

Speaking of the original article...
I'm so upset by reading this that I'm going to go for a quick walk outside for a while to settle myself down.

It makes me really sad and angry at the same time because I think about all the wonderful parents even just here on our forums but especially in Child Neurology who give so much love and devotion and their lives to care for their children. I think about Paul in Australia and The Champ. I think about many other people and their children.

I just find that all so barbaric and horrible they parents or doctors would treat a child that way, but I'm pretty upset so maybe I'm missing something that someone else might feel about the whole situation.

ugh Doing this to a child just doesn't seem as if it should be allowed under law. I wish I could read the whole article and not just the abstract.

peglem

11-08-2006, 06:12 PM

"They are making her not a person, but a pet." Quote from DOIHAVETO.

That's exactly what I was thinking. There is NO WAY to know at 6 years old what the prognosis is for her ultimate development and capabilities. I worry about the fact that Neuro-atypical seems to be thought of as less than a person. If you could do this, why not amputate the legs of a "Runner" so he won't end up getting hit by a car or disapearing and drowning in the park? This just makes me furious! Shoot- ALL kids are easier to handle when they are younger! I've joked about having mine cryogenically frozen until they get through puberty- BUT IT WAS A JOKE! And, where did these parents get the idea that they would not be able to take care of this child?

lisa6wks

11-08-2006, 06:39 PM

First of all, let me tell everyone here, that I think this sets a horrible precedence. What it says is that some people don't have the right to grow up, a fundamental right that everyone should have.

However, the child they are speaking of here is not a child with autism, but a child who has to be physically moved. I have watched many parents break their backs trying to lift and move their grown children. It is horribly difficult and their are parents who have to put their children in homes because they physically cannot take care of their child. That is also horrible. Instead of changing the child, the government should be giving parents the support they need to be able to care for their grown child in the home.

I, myself, had to stop teaching middle school aged children with multiple disabilities because all of the lifting and transferring was tearing my middle aged body apart. And that was with having a lift in the classroom. How about those parents who don't have, can't afford lifts? How about the single Mothers and parents with physcial disabilities themselves?

This solution is just indicative of a much larger problem. Most parents want to keep their severely disabled children at home. They just need help. They don't need doctors telling them instead that they should keep their children perpteually small and giving them hysterectomies, especially when they don't know what the long term side effects may be.

Lisa

Pamster

11-08-2006, 07:11 PM

I agree Lisa, they shouldn't be thinking this is their only option and they should be able to qualify for help at home like some of us have aides who come out and help us with our autistic kids, I know Med-Waiver pays for it here in Florida and every state should have something simliar to Med-Waiver to help developmentally challenged kids and adults.

So that isn't really an excuse you know? I definitely think this sets a bad precident. What does it say about our contry if we allow this stuff to happen unchallenged? I don't like what it says to me, but you're right about the concern that they would have trouble moving the grown child, yet I still think having aides coming out would be far better a fate for this kid then what their parents have chosen. I couldn't just ignore this and NOT post here about it to share with you and see how you all felt about this because I know how reading it made ME feel. *mad*

Lara

11-08-2006, 07:59 PM

I'm trying still to get my eyes on the full article.

In the meantime I just wanted to say that I guess if they're suggesting this type of treatment that they're expecting the child will live for a long time and fully grow. It's like stunting growth. Not a good way to phrase it but that's how it appears to me. What about the effects of the actual huge doses of oestrogen on the child as she grows? Surely there are other ways of helping people care for their disabled and bedridden children than doing something so horrible? I absolutely hear what you are saying Lisa, but I just think there must be some other way than doing something like this.

cckids

11-08-2006, 10:03 PM

I can understand where this family is coming from. I work in a mental health hospital and typically when a family with a severe dev. delay child is admitted, the question is asked "Why now..what is the straw that borke the camels back? Has the behavior changed, etc?" Most common answer is that the child is getting physically too large to handle. They need help trying to physically manage the child, the caregivers are refusing to come to the house because he or she hits so hard now, we went to the mall and she had a tantrum and it took six security personnel to get her off the counter and out of the store....it goes on and on. Puberty often creates a huge change in behavior, and why...what is the benefit of puberty for this child? A fifteen year old autistic girl gets admitted at work almost every 2 months and guess what...her period starts 1-2 days after admission. She constantly "checks" with her hand if she's still bleeding, pulls the pads off since her finger is clean, then has a huge mess and freaks out because she's bled all over her cloths.

I don't want to gross you out, but reality is boys are more frequently affected and it is difficult to imagine some of the complications that go along with a pubescent DD girl if you don't have one.

peglem

11-08-2006, 11:20 PM

Isabelle

11-09-2006, 12:56 AM

As I said everyone, included parents, can say or do anything of/to a developmental delayed child/person and get away with murder.
In Canada there is a ban against sterilizing a developmental delayed female.
It should exist one against forcibly altering the growth. That child talks and smiles to her family, there is potential there. Where were the child protection agency?
In Europe there is a law protecting the adult autistics from excessive use of psychiatric drugs and diagnoses.
But, still there is no guaranty that some misinformed parent/doctors cause damage one way or another to a DD child.
It happens in Germany and is still exists now in 2006, drugging, frying the brains of the DD children with the consent of misguided, desperate parents. Instead of providing the support, human support, that they need.

tgrimes

11-09-2006, 01:30 AM

I don't think this is a real case study. I think these Dr's are presenting a hypothetical case study to present as a viable option to caring for a bedbound person of 'manageable' size vs. caring for a bedridden adult. I think this is all in theory and intended for debate.

Lara

11-09-2006, 01:38 AM

Just curious why you think it's hypothetical?
I've been trying not to comment to much until I read the full article, but I wondered what made you say that and what I might have missed?

:"The child is now a little more than a year into growth-attenuating therapy and approaching the end of her growth, Gunther and Diekema report. "As of yet, there have been no treatment complications."

That's from the original poster's news item.

tgrimes

11-09-2006, 01:45 AM

http://pubs.ama-assn.org/cgi/collection/child_development

Lara

11-09-2006, 02:58 AM

OK, I'm really confused. :)

That links back to the abstract that I posted earlier today.

The full text article isn't available to me... maybe it is to you?

milivica

11-09-2006, 05:32 AM

Don't eeeven ask why I'm still up, and of all things still thinking about this.

Please realize I'm a very black and white thinker when I say this, but I don't see the difference between stunting her growth for reasons of being able to manage her size/weight themselves....and say removing the legs of your wheelchair bound child so you can manage all the physical maneuvering yourself. To stunt growth at 6, is a mutilation of the body of sorts. And I'm not putting a judgement on it...again, I don't know the full story. I tend to hesitate to judge other parents when ever I can. Using the wildest example, say for instance this family lived on an island, with no possiblity to move elsewhere for help, so had to do this or be unable to physically manage their daughter it's still mutilation. There are so many fine lines to this situation...if you are a wierdo mom that gets your daughter fake DD boobs, it's mutilation (to me) but on a totally different plain than the article.

Also, I don't see the difference between doing this growth stunting procedure and giving drugs to manage people - to the extent that it changes who they are and how they think and feel to their very core, and may do so permenantly. Although not the exact same thing, I give Vince a drug that is an antipsychotic even though he is not psychotic, it 'could' have permanent side effects, but he had become a danger to primarily his sister (death threats to us all). I would have 'liked' to have someone come in and do night duty and guard us all night so I didn't have to drug him. But that was not the reality. He might suffer effects from this drug long after I am dead. I do see what I am doing to him as different than the growth supression in terms of the degree or intensity of the effect on the child, but to me, it is the same principal. But please know I do not think giving him risperdal is 'the same' as stunting his growth, I don't mean that, but in reality I suppose I could have created a minifortress around his room all night for the rest of my life with him locked in it (just at night) and never allowed any potential weapon in the house even butter knives.

Hope I'm not sputtering annoying stuff. I'm more just thinking this one out loud....and again again again, I'd need to read the whole story.

Mother's Heart

11-09-2006, 09:13 AM

you missed the point that this child will in ALL likelihood not be independent not due just to cognitive deficits (or behavioural, like our autistic children) but due to profound physical limitations. There is also a statement that the child smiles and vocalizes (makes sounds), not that she verbalizes (speaks).

and that she is a loved and integral part of the family.

don't jump on me...I don't agree with those parents, as attested to by the fact I am a smallish single mom of a 5'10" violently aggressive autistic boy and intend to help him reach his greatest potential, both physically and functionally. Yes, he may require the support of a group home when I'm no longer here or able to take care of him. Or I may have in place another system of support for him. Group homes are not necessarily an evil...in fact, I'm glad they exist so my child doesn't have to go live on the street for a week when I die, which might be the last week before he dies or is incarcerated. But then, I also fear my child being in a group home, and being misunderstood or mistreated, or unhappy because of the inherent loss of some liberties.

I understand the parent's pain, I think we all should, to some extent, in light of the uncertainty of our own situations. I used to work in a residential facility and remember the anguish of parents who HAD to bring their w/c bound or behaviourally disordered children in as residents because they were too big to manage at home by just the mom while dad worked or whatever the situation. They did this to PROTECT the child and provide for adequate care, not to abandon the responsibility or make it easier on themselves. This happened as early as nine years old. This didn't mean these parents didn't love or respect their children...they just couldnt' physically manage them any longer. Some people don't view a group home as the most desired alternative. I can't judge for anybody else, just because I don't really know what is right/wrong in this situation (though I know there IS a right/wrong), but for myself I think the hormonal arrest of growth is wrong. (does that make growth hormone treatment for small stature children wrong too?)

don't know if this makes sense but gotta run without proofreading it. sorry.

DoIhaveto?

11-09-2006, 01:20 PM

I just can't stop thinking about this.

I keep wondering about the physical effects the hormone surges will have on her body, other than stuntung growth. Will it cause obesity, will it do damage to internal organs, will it cause cancer? I have this feeling that by taking this path, the parents may have considerably shortened her lifespan. I know of people who had hormone therapy, either via birth control pills or post hysterectomy therapy, that some of these things have happened to them.
I'm wondering the effect of an aging body, weight increases, etc will have on how long and her quality of life.
Then there's the mental side effects. She may at some point be able to understand resentment and rage against her family for forcing this to not be her choice. They don't know how far she'd have been able to develop by age 6. There's absolutley no way you could predict that.

Usually when people try and play God to this extent, someone gets screwed.

tgrimes

11-09-2006, 03:11 PM

Lara,
Just a couple sentences... that they think this option should be available to parents, and they are looking for a healthy debate. This is worded strangely if in fact they already did so.
This page lists two different 'partners' posing the ethical ramifications of such a thing on the same month:
Growth Attenuation: A Diminutive Solution to a Daunting Problem
Jeffrey P. Brosco; Chris Feudtner
Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma
Daniel F. Gunther; Douglas S. Diekema

Maybe Guenther and Deikma want to be the first with a case study. I highly doubt this child exists except for ethical debate purposes.

tgrimes

11-09-2006, 03:35 PM

Well, maybe not, I just saw another article that says the paper by Brosco / Fuedtner is based on the original authors and intended to further the debate, so maybe this is what confused me.

peglem

11-09-2006, 04:08 PM

Sadly, the people who this technique will be used on will have no voice in the debate.

Lara

11-09-2006, 04:09 PM

It's OK. I was just curious.
I'm registered to get articles there, but because I have a free subscription it'll only allow me access to articles after they've been published for a number of months. It varies from 3 to 6 months. I should go re-check my subscription and make sure that's right, but as of yesterday I couldn't access that particular paper. If I find it I'll let you know.

AKF

11-09-2006, 10:53 PM

I agree with Mother's Heart that we need to be careful about judging people. There was nothing in the article that suggested that the parents were not loving parents to their child. My son is also much larger and stronger than I am, and I have many times worried about this. I really can understand how they might belive they are doing what's best. I have seen parents heartbroken because their child got too big for them to physically care for them.

I think the doctors that suggest things like this to vulnerable parents and then "market" it as a solution to their worries; those are the ones who need to be censured. They need to be finding more supports for parents like these, not given them "treatments" that will likely have consequences down the road.

cckids

11-09-2006, 11:13 PM

okay cckids, I do have a low functioning DD girl. She is 12- but not developing yet. So how do you handle it, beyond cleaning up the mess? Do you try to teach them how to deal with it and if so, how do you do that?

And really close supervision. She ends up with 1:1 female staffing and we've tried visual prompts (similar to the no picking nose one)... It seems like it ends up being clean up and prevention. The main problem in prevention is that like all our kids she gets constipated so we try to let her do her BMs with the door shut and just listen close by...etc. Then she'll flush the pad, etc. One of the doctors suggested to her mom using one of those cap or cup type devices (they sell them in by the sanitary pads, and tampons, etc. ). That has to be changed every 12 hours if I remember right. But then he quickly recanted himself going nope...no one is going to help her change that. That's just asking for trouble ...which is true.
They did put her on the pill to try to reduce the cramps and lighten her period.

I'm back on nights now so...I'm not really dealing with it much directly at all.

silentmiaow

11-10-2006, 12:42 AM

Sadly, the people who this technique will be used on will have no voice in the debate.

Hopefully, this is the last person it will have been used on. If not, then some people it will be used on undoubtedly eventually will eventually have a voice in this debate. After it's too late, probably. I've known a number of people who were diagnosed as severely or profoundly intellectually disabled, usually because of autism or cerebral palsy, and eventually acquired a communication system (or had their previous communication system recognized) that allowed them to use standard English to communicate. Undoubtedly someone this technique is used on, if it becomes widespread, will fall into that category. I'd just rather it not become widespread (or, in fact, used at all) in the first place. I have never met a person who was sterilized for having a developmental disability who appreciated that particular procedure having been done to them, except when it was done for legitimate medical reasons (as in, cancer or something, not as in, "we don't want to buy a Hoyer lift" or "how awful it would be if she menstruated or had babies").

This is a world in which there is technology available to lift people who cannot be lifted by hand. This is a world in which there should be services available to parents in situations like this, and also to disabled people as adults. (These services do not need to take place in a group home, there is nothing special about group living environments that causes the services to become better inside them. People trained to do the exact same things can do them outside, if the funding is made to follow the person rather than channeled solely into certain kinds of living environments.) This should be a non-choice, given everything that is possible to provide someone.

Heather

11-10-2006, 10:54 AM

I'm here for another child and other reasons, but I was compelled to read this and have a different perspective. Ariana is as yet not specifically diagnosed and one wonderful thing about her is her robust health. I love to brag about her height and size actually, becuase I'm not her birth mother and I was a runt.
Aidan, on the other hand is SEVERELY disabled with quadraplegic cerebral palsy. He is 3 years old, only weighs almost 30 lbs, and wears size 2T. I struggle to help him gain every single ounce and he's been hovering at the same weight for months. There is ZERO fat on his body. I know that because a Ketogenic diet specialist did the fat pincher test on him yesterday. BTW, we are not going to do the diet now. His tiny feet are swimming in size 8 shoes, where his sister wore size 12 at his age. He has hydrcephalus, so his head looks relatively macrocephalic on his little body.
When Aidan was only 6 months old our pediatrician and caseworker ganged up on me to visit a specila nursing home for severely disabled kids. Because we're permanently fostering we must never appear to be "non-compliant". I took my sister, for moral support, both knowing there was no way in heck I would ever leave Aidan in any institution for respite.
The kids there were mostly non-ambulatory and some were vegatative. One little girl, about Ariana's was heartbreakingly mobile and social but on a ventilator. What left the biggest impression on me were how many teenaged boys were still the size of small children. It provoked a lot of thinking and discussion for my sister and I, naturally.
I'm 52 years old, 5'2", 120 lbs, post menopausal and starting to feel my age, with osteoarthritis. Aidan and I have practically got a symbiotic relationship. The only thing that will kill us both sooner than caring for, lifting and carrying him would be to separate us!
We have never qualified for one single hour of paid professional nursing respite in our home, becuaes he's not on a ventilator. The cut-off for a "medically fragile" status and personal help is ventilator dependance in WA and OR.
I recently found out that when a person is over 3 years old, weighs over 40 lbs and still can not sit (Aidan will probably never be able to) they qualify for a medical waiver and 20 hrs of monthly personal care, which equals a day off.
That's our race. Which will happen first? Will my back break before Aidan gains ten more pounds?
Aidan has a lot going for him. He is absolutely gorgeous and it's not just grandma Mom talking. Everyone gushes about his great hair and beautiful big blue eyes, with the best eyebrows and eyelashes. He is an adorable flirt, although he's non-verbal. He does say Hi sometimes. I hear many other words, but doctors dismiss it as my hopeful imaginings, based on his MRI. He is learning to use head switchs though and I'm not the only one who sees the sign of his receptive language, so who knows?
What do parents wish for severly disabled kids, when they're older? Do we want them to end up with big heavy bodies, when strangers may end up transferring them and cleaning their messy pubic hair? I want Aidan to have independance and experience the pride of maturity. I want him to experience as much dignity as possible, but also to always illicit affection in others. Does anyone here know what I mean?
I saw a documentary about a young Irish man with Butterfly syndrome, which is an extreme skin disorder. Because of the disease process he was left sterile, small and permanently prepubescent. It was eery to see him legally drinking and singing in a Pub with a little boys voice and body. He was an effective advocate for the disorder though, becoming a celebrity fiundraiser in Britain. He dies at the end of the documentary.
I recommend everyone try to see it and another documentary called "Little Man" by Nicole Conn.
I for one, do not judge that girls parents. I don't know how disabled she is. I would presume they love her enough to want what is best for her life and to be able to continue to give her the best loving care, FAMILY.

silentmiaow

11-10-2006, 02:09 PM

I know a lot of people who are severely disabled and need lifting. Some of them are not only normal size, but in fact quite large. There is equipment to do that. It's not undignified. It's not "more independent" to be smaller, nor is it "more dignified". A person does not need to be small to be likable, and deliberately infantilizing someone to make them more likable is misguided and cruel (even if not intentionally cruel, it is a cruel act). All of the people I know in such categories are totally indignant over this case, because many of them know it could have been them. I have never met a large, severely disabled person who wanted their growth stunted, only people who want people to understand how to use proper equipment.

By the way, having people touch your pubic hair is totally normal when you're disabled in a way that requires someone to do that. A woman just washed mine in the shower. I am not keeling over in undignified horror. Nor am I doing so when people lift me, with or without equipment. (I have a movement disorder that can at times result in total immobility.) These are just facts of life for us, the fears of these things are in the heads of non-disabled people who've never been us. Which, by the way, is behind almost all the barbaric policies towards disabled people: Non-disabled people's assumptions of what we'd want, without ever asking us. (Yeah, some people cannot be asked, but when most of those who are asked say one thing, it should give you some idea. These parents should have spoken with a wide range of adults with severe cerebral palsy who can communicate either through a communication device or orally, about whether they'd have wanted their growth stunted so people could lift them easier. They should have also spoken to developmentally disabled people who had been forcibly sterilized for "well-meaning" reasons of various sorts, some without even being told that's what the procedure was.)

Remember, the Kennedies lobomized their daughter, and lived to regret it. The most fashionable and cutting-edge "treatment" of a time may have devastating consequences.

Isabelle

11-10-2006, 02:23 PM

I feel for those parents and for all of you with young DD children. You wish you could see the future. I have the present of your future that might happen to your children. I see society is not becoming kinder and all inclusive to DD people. I see it is becoming more cruel.

Group homes is not the answer or the place where your children will be safe. More to the contrary.When you place the responsibility of caring for your children on the state, using taxpayers money, the state give the money and turns the head away, allowing all sort of abuse to happen.

Indidualized funding allows families to get together to create the right home and hire the right people to care for their children. The home with 3 or 4 disabled people is served by a manager/worker for the 3 shifts and depending on the severity of their disability, the home has 3 to 4 attendants at all shifts or just for the day time, reduced to 2 awake staff for night shift. So if your child/ person can't sleep,there is someone to give him company and support. There is video monitors everywhere and scheduled places to go, easy to track places where they go and activities for them to enjoy doing and to grow and learn and there is not drugs allow to be given.

The money goes directy to staff, housing and activities not to administration, where its members' salaries take money away for the care of the disabled. There is more savings when there no money to spend on psychiatric care: psychiatrists, psychologists, behaviour therapists or expensive psychiatric drugs.

Money should spend on expecting staff to learn how the individual DD comunicates. The dd person should be provided with any and every comunication tools available, but the most important is the human being providing the support. Either he/she is willing to connect with the dd person or goes.

The salary of those specialized staff should be enough to make a living and one condition for them will be to make a commitment to one of two dd people for as many years (5 ideal) as possible to provide the stability that the dd person require/craves.

The advantage there is that if a staff has a problem with a dd person, the staff is reeducated and the dd person is not sedated/punished for being disabled.

Parents while alive and in good health are on board and spent some hours with their children. Once dead, if the dd person has siblings or relatives they do check or visit, have meetings to see that their relative are enjoying the quality of life they deserved.

Utopic? It's not. It's the will of parents to prepare the right place for their dd children to enjoy a good future. I believe.

Heather

11-10-2006, 03:04 PM

I feel misunderstood. I was in no way sugesting that anyone with the capacity to understand be deliberately kept small, ever! Growth stunting often happens as a side effect of severe brain injury and sometimes precocious puberty too.
I'm talking about the possibility of a totally infantile person, who will never mature mentally enough for independance, becoming an impossible physical burden. I also know the caliber of many caregivers and what their callused attitudes can be. My step father is in the best nursing home now and yet my mother feels compelled to spend every day there taking up the slack, helping to keep him clean, etc.
I respect the perspective of physically challenged but mentally competant people. I also believe in presuming competance and doing everything humanly possible to provide independance and accessability, as well as the right for them to reach whatever growth potential they want. It's a different issue.

peglem

11-10-2006, 03:40 PM

Isabelle, are you talking about a parent Coop group home? I've never heard of that before, but it sounds wonderful! Is Danny in that situation? How is it working?

Heather

11-10-2006, 05:24 PM

Isabelle,
What you describe is the best solution I've ever heard described. I will print out your post, if you don't mind and keep it in our idea file. I have always loved coops and have belonged to several, over the years and even tried to start one once.
I believe in cutting out administration salaries and vendors commissions too. The entire insurance industry is corrupt and the way society is organized is brutally unfair and cruel in general.
Thats why I agree, there must NEVER be a "policy" of deliberately stunting the growth of any class of people. George Orwall anyone? I did not get the impression that the girls family intend to start any movement. Does she only have cerebral palsy? That is such a general non diagnosis.
I do appreciate the opinions of grown disabled people and seek out solutions from people who have been on both sides of the caregiving issue, thinking into the future.
Aidan has severe brain damage, not just CP.
One rude Pediatric Neurologist and we've known several, said that looking at his MRI, before she ever met him, she expected Aidan to be vegetative. We never went back to her. But I know it may already be miraculous that he has what awareness he does and can feel love and express affection, in his own lovely way.
My perspective, as a Mom, makes me count my blessings. I'm glad that Aidan is a small infantile person, although I do wish he was bigger and non-infantile. That's why I can understand that a family might decide to halt growth. Some 2 year olds start growing beards and I also understand why their families might suppress precocious puberty.
I don't think of Aidan as an adorable pet, or want him to be. I doubt if the parents of the severely disabled girl think of her as a pet either. Who knows?
Dignity is a somewhat of a 2 way street, IMO, even if it NEVER bothers Aidan having intimate, total care. I just think that a smaller smoother body, without huge erections, is probably going to illicit more kindness and less problems all around.
If a severely mentally and physically disabled girl will never want to bare children I can see why not having the hygiene issue of periods and the uterine cancer risk from hormones might be desireable. I would never DO the stunting. I'm just glad I don't think I'll have to and I can't judge that family's decision.
Anyway, I hope before I get too old, we can get Aidan into something like the co-op.

silentmiaow

11-10-2006, 07:45 PM

I don't believe that it's possible to say someone is "infantile" in adulthood. They may not think or move like most adults, but they are not thinking like an infant either, they are another sort of person -- another sort of adult person who has certain rights, including no body tampering.

What I'm saying is, also, even if you were right, you can't tell the difference by looking, I know too many exceptions. Even ten years ago I was not considered to have certain capacities that I very much had and have. People looking at me see me as not having much cognitive capacity at all.

But even during times when I have truly lacked certain capacities (and I mean down to the level of, cannot abstract enough for telling one color from another or even concept of "color"), it is not the same as being an infant, it is not the same as being a younger person, it is not fair to categorize someone that way. A person with that much trouble conceptualizing the world still doesn't need their body invaded, and I'm additionally not sure most people can tell who has what amount of trouble conceptualizing what, especially in the realm of people with severe communication impairments.

I don't think I've misunderstood you, I think we have radically different ideas about both what a profound cognitive impairment means about a person (and their right to not have their body screwed up) and whether such things can be measured accurately from the outside.

I mean, look at Sue Rubin (who believes herself not to have thought for the first twelve years of her life, because her way of perceiving the world was so totally different and because she did not really conceptualize things in any standard way), or me, or the women who wrote I Raise My Eyes to Say Yes and Annie's Coming Out, or the totally unresponsive people currently being found to be able to respond through brain activity (and possibly in the future acquiring communication systems hooked to brain-controlled switches), or the ton of people I met at the Autism National Committee conference this year.

But, even if all of us were what we had been said to be, I don't think that means we would be truly infants in adult bodies, nor would it mean we had no right to actually grow an adult body. As someone who's experienced roughly the same kind of cognitive impairment Rubin describes (although I view it differently than she does), I don't think when I thought like that it would've been okay to stunt my growth deliberately, just because I was not using information and understanding the way most people were.

I think people with more severe disabilities have to be protected more from human rights violations, not less, because they/we are less likely to be able to speak out against them when they are being applied to them/us, and other people are more likely to have damaging infantilizing stereotypes that promote these violations. So, I think that severe disability is more of a reason not to do it than to do it. Protections in that area need to be more stringent, not less, because of the vulnerability of those these things are going to be applied to. I find it kind of elitist to only provide protections to the physically disabled, but not cognitively.

lisa6wks

11-10-2006, 08:54 PM

I totally agree with you silent. We have more of an obligation to protect those of us who may not have the cognitive ability to take care of ourselves. None of us have the right to take away the rights of another, even in then name of "caring for them". They have the right to life, dignity and health. We don't have the right, even as their parents to stunt their growth, or mess with their hormones, in the name of making it easier to care for them. There are other ways of doing it, parents just need the right amount of support. No one should have to be in the position of doing this to their child just so they can care for their child.

If we can't preserve the rights of those who cannot care for themselves, what does that say about us as human beings?

Lisa

tgrimes

11-11-2006, 12:29 AM

I've had to think a while on this... as I really feel that parents should be allowed to do things outside the 'normal' course of action even though considered 'detrimental' to the child by some.
Let's say the following existed:
1. Parents have a disabled minor child.
2. Parents truly believe a child would benefit from a controversial treatment.
3. They were able to get (more than one) real medical doctor to agree.
4. The case was reviewed and approved by an ethics panel before commencement.

If the above exist, then there should be no question as to its legality, at least until the state pressed charges for something completely out of line.
The question is, where is the line?
That's what the authors are trying to define.
Think of the opposite of this discussion - where is 'the line' in what procedures parents can reject?

Isabelle

11-11-2006, 01:35 AM

Peglem and Heather:

Danny is in my care for the last 2 years and 5 months. And for the last 3 months 25 days he is off, finally, of all meds. He will not get any services from the government because I refuse any more psychiatric/psychologic/behaviour assessments and no more meds. I found them a waste of money. After 21 years of "psychiatric" treatment we would be dense if we do not question the use of drugs that have not helped him at all but have caused a lot of pain and suffering.

Only those parents with dd children with all sort of dxes and on drugs are receiving funds and services. Of course there are many in waiting lists. But even if I place him in a waiting list, no group home would take him because I am, in short, a "difficult parent", no group home, no staff wants to work with my son because of me (Something similar Mili is facing). I have been blacklisted. A risk I knew I was taking. My mental status and my capability to care for him questioned. Moreover I was investigated and threatened to take him away from me and the only place for him would be the psychiatric ward and to give him drugs.

As I am getting on with age questioning my capability and my mental status will become standard, lucky his siblings are standing by me supporting every decision. Still Danny's future is uncertain once I am sick or dead.

Parents with similar thinking (those who believe that their children are better off on drugs would be separated from those who don't agree, what is wrong with that?) and with compatible children should get together to get individualized funding preparing for a future in which you as parents have a say, a final say. We know our children and we love them. Staff, teachers, etc. working with our children connect with them or are out. There are plenty of good caregivers who are willing, I know that, willing to work under parents supervision and/or video cameras monitoring all their movements.

Besides, I know for a fact when an autistic receives good care, they really show it. I have seen them and I have seen them when they didn't.

Individualized funding to provide individualized support to the DD. That's what they need, these are people dependent disabled, they need someone to consistently decipher the world to them, without anger, without drugs, without physical intimidation and abuse. Some of you use a word to describe your deep connection with your child 'symbiotic'. That's what they need once they made a connection, they feel understood they are happy, a symbiosis with someone and not necessarily with a parent.

I could go on for ever but, hey! I don't want to dethrone Mili.

Co-ops sound good, but I don't think exists but just in my imagination.

lisa6wks

11-11-2006, 10:34 AM

tgrimes,
I think another criteria that would need to be met is whether this procedure would improve the quality of life of the child. And if the procedure was experimental and had the possibility of hurting the child, would there be another way to get the same results that would not be as dangerous.

In this case, if there was more support from the government for the parents, these procedures would not be necessary, so the the onus would be on the government.

Also there are many other ways of dealing with adolescence in severely impaired children then giving someone a hysterectomy at the age of 6. For many children it is not really a big deal to go through the whole process, others are put on some form of birth control (girls) that doesn't keep their bodies from going through the natural process of adolescence.
You might also be amazed at how many really have no problems with the whole thing anyway.

Lisa

lisa6wks

11-11-2006, 10:43 AM

Mother's Heart

11-11-2006, 11:21 AM

wow, very interesting link Lisa6. I never heard of a microboard...and actually wasn't aware of this IF concept. (sigh of relief from hope seeping in.)

Mother's Heart

11-11-2006, 11:22 AM

tgrimes

11-11-2006, 02:07 PM

Heather

11-11-2006, 04:55 PM

I mean by infantile, referring to the human physical developmental stages, with no relevance to "human rights".
Infantile means unable to roll over, hold the head up, open the hands, etc. Aidan still has the moro reflex of a newborn. IN THAT WAY, he is infantile.
He also doesn't have a lot of brain tissue. Ventriculomegaly, following Hypoxic Ischemic Encephalopathy is like having a water balloon inside his skull, with a thin layer of damaged cerebral cortex left. His white matter is gone and there is almost no corpus callosum.
Even his therapists know that talking to Aidan in "Parentese", with the kind of high pitched, exaggerated expressions used on infants, is what captures his attention. We're not off base and ignorantly disrespectful. I took an excellent 6 week Hanen communication class called "It takes 2 to talk". The most effective way to get some non verbal child started communicating is to meet them where they're at, developmentally. If silly nursery games and songs are not PC for chronological age, because they would be seen as violating his rights, he won't even lift his head for "age appropriate" conversation.
What Aidan would be, if his hydrocephalus didn't expand his skull is microcephalic. I am curious if any offended adults with CP are microcephalic? I HOPE & PRAY Aidan can eventually interact and make his choices and opinions known. I'm doing everything I can to advocate for him.
It's difficult to tell what thoughts or intentions are going on, disconnected from his body, but it's pretty safe to assume that his consciousness is less mature than his chonological age. I know he is a person with more abilities than evident. I don't write him off.
I wish there was unlimited technology and therapy for every child who suffers such early brain trauma. They deserve whatever augmentive support it takes to use, as well as universal access to everything and anything all 3 yr yr olds get. I believe that is simply their right and wish it was actually happening!!!
I think maybe some adults are taking this very personally and projecting themselves into a unique family situation. From my perspective, I would trust the girl's family, if a court and doctors decided in her individual case.
I bet, if Aidan could speak, he would say he doesn't want to get so big that he can't stay with his family. NOT THAT I WOULD STUNT HIS GROWTH!

NaughtyMouse

11-12-2006, 12:40 AM

It seems to me that these parents are trying to give this child something that is very important to her - being able to have her parents personally care for her as long as possible. It is a very sad reality that many severely disabled children/adults have to leave their home because their parents cannot care for them any more simply because of their size and their parents' age.

I agree that in a perfect world parents would not have to make this decision because daily care would be facilitated in the home by able-bodied employees once the parents were too physically weak to completely fulfil this responsibility themselves. But to make decisions based on what one would do in a perfect world rather than in reality can lead to bad results for the individual child (for instance, when I took DD out of my local school system, I did that based on what was right for her given the actual options and realities available to us, not what theoretically should have been available - after having spent thousands of dollars unsuccessfully fighting for what 'should' have been).

I agree that this issue is problematic because one needs to consider the side effects (and I don't really know what they are), and there IS a 'slippery slope' of logic here that does lead in the direction of cutting off someone's legs (which they're not using anyway) to make them more manageable, and the idea of that would horrify me. But I think that in 'judging' these parents, one needs to consider that they are making a decision to put MORE of their own personal resources into caring for their daughter themselves, rather than putting her in a home, which would probably be easier for them. I'm not saying that I would make the same decision, but I do think it sounds like an unselfish one, and is likely to lead to more happiness on the part of their daughter than the alternative would.

x<BO~

Isabelle

11-12-2006, 01:07 AM

Isabelle,
Have you considered creating a Microboard for Danny? Check out this website http://www.communityworks.info/articles/sd_structures.htm

It is possible to create places for your child to live in which they determine who works with them and the money provided to the state for institutionalizing your child can go to their own home. I personally know of at least one severely disabled young man that this is working for.

Lisa

For years many organizations and parents groups have been lobbying the Government for IF SD and MB, but agencies caring for dd in residential settings, receiving not only taxpayers money but large private donations, are fearful of losing their position as 'middle men' and of course losing control, power, money and reason to exist.

Caring for DDs people is a very lucrative business, the non-verbal autistic has no voice, no legal status, it's so easy to make them dangerous to themselves and to others, mistreat them, give them drugs that make them violent. It's so easy. Parents are very easy to misled and concerned caregivers are easily intimidated into silence. The more "complex" the case, the more money they receive, it doesn't mean that the "complex" case will receive better care, far from it. The "case" will be put to sleep 18 to 20 hours a day and if the "case" on drugs become violent and self-injurious, it's kept confined. Many people have asked authorities how many autistics/aspergers are been forcibly confined and chemically restrained in group homes and psychiatric wards.

Once the autistic is 21 the government is inclined to be too busy to care unless 2 or 3 died and their deaths made public. It's a very serious problem, to me is a crime against the most vulnerable.

mysticwoman

11-12-2006, 01:15 AM

Utterly Spechless.

tgrimes

11-12-2006, 01:59 AM

... and there IS a 'slippery slope' of logic here that does lead in the direction of cutting off someone's legs (which they're not using anyway) to make them more manageable...
x<BO~

Yeah, good point. It does seem to lead there.
I think mili said something about that too and I would like to use it in a poll, hope that's ok.

NaughtyMouse

11-12-2006, 10:01 AM

Thats okay, of course.

Though I hope you don't think I was saying I am unable to see a difference between initiating a biological process that the body eventually performs naturally anyway vs. something that won't happen at all in the natural state and inflicts pain.

I was just saying that some of the logic that leads to the first can be used to justify the second, leading to a hazardous situation where one would have to count on decision makers to be mindful enough to be able to see the difference between the two.

I know I personally disagree with the hysterectomy, though. There are commonly used hormonal ways to ensure contraception while greatly decreasing the number of menses, which is a more biologically natural state for women than having menses every month for years, which is a state artificially brought about by contraception in women who would in a more 'natural' (though for many of us undesirable;)) state spend the majority of their lives not menstruating because of pregnancies and breastfeeding.

X<BO~

Heather

11-12-2006, 01:17 PM

In WA state and in Oregon too, the only way a family can get any in home personal care is if their child is permantly on a ventilator. In the 3 years we've had Aidan in our home, we have never had one single hour, of in home, professional nursing, paid by medicaid.
In OR, ALL the public special needs classes were closed last summer. There is no more special education. The "restricted" settings which were safe accessible and well equipped have been shut down. Several dumpsters outside the school that Ariana attended were repeatedly filled with tumble forms, standers and all kinds of used SN equipment, until the entire building was emptied and is now mothballed by the school district. We have Ariana in a private special needs school.
I went dumpster diving with my 24 yr old daughter and retrieved a specially adapted tricycle I couldn't stand to see get thrown out. It's old in an awsome "vintage" way. After we took the pedal plates off, she rode it our neighborhoods tricycle parade in August and got nothing but compliments!:cool: I digress
There is nowhere close to our neighborhood, for Aidan to attend an EI playgroup. He has already been turned away from the 4 closest for accessibility and liability issues. In the name of inclusion most severely disabled kids in our county are forced to stay home, because there are no community "natural enviroment" options that are safe and practical.

peglem

11-12-2006, 02:25 PM

Years ago, when the "inclusion" model of SPED began being pushed by the federal govt., I was suspicious that this is where it was headed- its cheaper to do inclusion than high maintenence self contained programs. This really scares me, as I see no way my child could ever be in a full inclusion situation. Most of the actual inclusion that I've seen (and I'm not saying good programs don't exist) were really just plunking the SPED kids into a regular classroom, where they sat and watched the rest of the class do their thing. In the best situations I saw, the regular ed teacher made attempts to include, but the result was not very effective. The behind the scenes, teacher attitudes were usually, "I've got enough to do with all these other kids and I shouldn't have to deal with this problem because my time would be better spent helping the 29 other students than just this one." I'm very blessed to be able to send my child to private SPED school at district expense. The school she is currently in is not really able to meet her needs anymore, so after Christmas break, she'll be changing to a school that has the resources to really meet her needs. This school is private, but has a giant list of corporate sponsors. I think the general public, who does not have personal, close connections to special needs kids, believes they will never be able to contribute to society in a meaningful way and so are a waste of money and effort. I fear that one day in the (hopefully) distant future, compulsive extermination will become the preferred treatment option.

Roman

11-12-2006, 11:52 PM

Another thing: WHY is it would be easier to "take care" of her if she is smaller? Are they just worrying about inconvenience of lifting her when needed? Probably not. The reason height is so important is STEREOTYPES. Taking care of someone tall would go against a stereotype, right? So, closer to the point, it doesn't seem to mesh if she is child in MOST of the things, so lets make her a child in EVERYTHING by also making her short. So how can they POSSIBLY have ANY kind of respect for a child if their whole POINT is to make a child "short" just to rub into everyone's head just how delayed she is.

And another thing is that there is always hope that may be SOMETHING will be discovered in few decades. After all right now we know so many things that we didn't even dream of few decades ago. But, by making a child permanently child-like they basically sign off their claim of any kind of hope for a treatment. Even when there will be magical cure for autism, the child would still be disabled since her brain is also permanently in 6 year old state.

By the way the whole thing reminds me of shock therapy (ECT). THe way shock therapy cures mental illness is that it damages brain so much that it simiply doesn't have enough energy to halucinate. In ohter words, memory loss or any other "side effects" of shock therapy are NOT side effect, they are its goal! Since the brain is no good anyway, nothing will be lost by damaging it. So lets damage it, that way it won't halucinate any more. Looks quite similar to growth arresting treatment.

Mcdom57

11-13-2006, 12:57 AM

Just happend upon this article and I am stunned.

This raises a lot of issues for kids in foster or substitute care. I am a social worker - I have one 7 year old with Leukodystrophy who has been in a nursing home since he was 4 - he has no cognitive functioning/no reflexes/no awareness.
I have another boy who is 18 and is becoming increasingly more difficult for the foster mother to handle - he has severe brain damage and physical/developmental disabilities subsequent to abuse sustained at age 2. He is now taller and stronger than her and there is the possibiltiy of harm if he has seizures or angry outbursts. He cannot function at all on his own - he never will. He will most likely transition soon into a group home if I can locate one who will take him.

So I do not see wanting to care for a smaller person as a stereotype - but a safety issue that might allow the child to remain in the home longer.

Not that I agree with this kind of medical stunting though.

I have others.....services to these kids are a joke. I have begged and pleaded for years with agencies for some of these kids. The results are/were minimal.

These kids don't have parents to advocate for them and they will transition from the foster care system to the adult group homes. I shudder to think how vulnerable they might be to any kinds of treatment proposals to stunt their growth as a care issue. Of course, any kind of medical treatment for them has to go thru the courts (not the best oversight, but at least something).

Roman

11-13-2006, 02:37 AM

Okay whether or not the government has staff needed to lift a child is something CHANGEABLE. YOu can't predict what government will do 50 years from now. On the other hand, making child permanently small is irreverseable. I simply don't agree with makng irreverseable life long decisions based on CURRENT state of things.

Also, why take care of a child anyway? For instance, why feed a child? The reason you need to feed her is that food is needed for growth. But here they are STOPPING growth. So this kind of kills off a purpose of feeding her. And this can be made more general. In fact, since it is no longer their goal to make their child develop into a healthy adult, I don't see why take care of her at all? THe most convenient option is simply lock her in a room and forget about her. And in this case she might as well be tall since you don't have to lift her eihter.

silentmiaow

11-13-2006, 03:43 PM

It is possible to create places for your child to live in which they determine who works with them and the money provided to the state for institutionalizing your child can go to their own home. I personally know of at least one severely disabled young man that this is working for.

In fact, in the state I live in, that's outright policy. I'm considered severely disabled (would be admitted to an institution easily in a place with stronger institutional bias for people with developmental disabilities) and I and nearly every other person I know receive Medicaid waiver funds for our services rather than putting us in group homes or larger institutions. I'm even part of a program that replaces roommates with electronic surveillance at night (someone can be here in 5 minutes if there's a problem).

In some other states, people just like me are living in state institutions and high-level group homes, and usually doing a lot worse in general. It's nothing to do with degree of disability, it's to do with where the money goes. I think it would be horrible for people like us (or unlike us, for that matter) to have our bodies radically modified because the state couldn't get its act together.

silentmiaow

11-13-2006, 03:56 PM

Actually, about the people who object to this, I know people with hydrocephalus who do, I would not be shocked if some people with microcephaly do. I personally have a condition that normally results in microcephaly but has some overlap with the normal range (which is where I fall, in that in-between zone), and have known a number of people with it, one of whom is the person with the severest form of the condition (which affects other body parts as well) known to have survived as long as he has, none of whom have been artificially kept small.

I would imagine anyone who lives in a good family would wish to stay with his family (at least a certain amount). I would also imagine that there is so much technology to allow people to lift heavy people, that it would be far better to fight for parents to all have access to that technology, rather than to unnecessarily mutilate human beings both hormonally and physically. It shouldn't be about modifying the body of a specific person, it should be about access to the necessary things to assist that person. No matter what their particular labels are. If two people are equally physically disabled, and thus need the same kind of physical care, why should the fact that one of them is more severely cognitively disabled mean that person be kept short while the person who is not as cognitively disabled be kept their normal size? If people are willing to go that extra mile for severely physically disabled people without cognitive impairments, why should people with cognitive impairments be subject to more invasiveness instead of less? Is it just because people CAN, or what? It seems to me to be open season on those who can't talk back.

Heather

11-14-2006, 12:38 PM

Roman

11-14-2006, 12:46 PM

In this same vein; there are parents who choose to give their disabled children, who would otherwise be dwarfed, growth hormones. The idea for them is that a more typical appearance and strength increases function, access and acceptance. How do people feel about artificial growth and puberty for SN kids, who would natutally remain small and prepubescent?
Also, Aidan and many other babies born at 26 weeks and younger, would never survive "naturally". Many thousands of Medicaid dollars were spent to SAVE his life and yet his birthmother was a meth addict who went AWOL, abandoning him in NICU, to go back to getting high and living on the street.
After 7 weeks on a ventilator and another month on oxygen, he became strong enough to breath room air on his own, but he is G-tube dependant and would "naturally" have died. How do people logically/philisophically justify parents having the rights and lifelong responsibility of making life or death decisions to intervene surgically to save their child's life and yet not alter it an any way, if it makes caregiving possible. The NICU sends them home and Medicaid tries to get off as cheaply as possible. The family is often left giving 24 hr total care, without the strength to change society too.:eek:

Okay, by the same logic, lets take a healthy child. If you don't feed him, he will die. So, every single child, healthy or not, is naturally programmed to die within first few weeks of their life. You are artificially keeping them alive by feeding them.

So here is a logic: your goal is to make a child as healthy as possible. Within this frame of logic both regular caregiving AND artificial life support makes perfect sense. What you have to focus on is NOT hte "artificial" part, but "help" part. THe goal of the parents is to help, so ANY kind of help makes perfect sense.

On the other hand, artificial dwarfing makes NO sense because this is OPPOSITE to help. So if parent's goal is NO LONGER helping a child, then why bother taking care of them on the first place? So here they are making child smaller so that they can lift her and that way htey can take care of her. But what do they mean taking care of her? I thought they don't care even if she is small for the rest of her life. So might as well starve her and be done with it.

silentmiaow

11-14-2006, 04:35 PM

Actually, I just remembered that one of the people I know who is the most adamantly outraged about this does have microcephaly, not that it should make any particular difference. (She has it as a consequence of Rett's syndrome.)

I don't have any problem with procedures that actually help a person survive, and I never have (that's why I made a distinction between unnecessary and necessary -- if she had certain kinds of cancer, a hysterectomy at that age could well be necessary, and obviously I wouldn't object, so there is no need to bring up genuinely life-saving medical procedures). But messing with someone's growth and bodily organs just because you want to be able to lift them without a mechanical lift, doesn't fall into that category, especially given that you would refuse to do so if the person was equally physically disabled but less cognitively disabled (what precisely is the rationale for that???), and especially given that such lifts and other mechanical aids do in fact exist (and are in fact probably far less expensive than this procedure will be). Being less invasive wherever possible is always good, especially when a person can't consent to a life-altering procedure that may have horrible consequences down the road (and lack of the procedure would not kill her).

Tell me, when I was younger, living in institutions, regarded as severely violent, regarded as incapable of comprehending much, and regarded as having no future, would it be better to (a) figure out how to get me a life outside of that situation, or (b) stunt my growth permanently so I'd be less of a problem to people? I'm kind of glad that some people bothered to pick (a), personally. I wasn't particularly enjoying things like forced hormones (which I did experience).

lisa6wks

11-14-2006, 08:49 PM

Silent,
You have totally said what I wish I could.

Thank you,
Lisa

Heather

11-16-2006, 12:02 PM

I know some people would draw the line at ability to swallow.
I CERTAINLY DON"T!
BTW, here's the reason I'm so very interested in this topic right now.
Besides wanting Aidan to gain 10 pounds ASAP, to qualify for help, we're facing the question of more elective surgery, FUNDOPLICATION.
I can either go on struggling to put weight on Aidan and keep his food down, through drip rate, round the clock feeding and careful positioning, or I can follow the advice of some of the doctors who think a fundo is the solution.
I've been against more surgery until he earns it with insurmountable problems, like aspiration pneumonia, as long as we're "managing"; even though it takes incredible effort and vigilance. However, 24 hr drip feeding is creating problems with mobility, naturally, even though we have an infinity enteral pump, which is the greatest little thing available.
DH says I'm going to trip over the tubing and kill us both some day. Therapists have a hard time coping and all school district teachers and aids have to be instructed in strict protocols before they can take responsibility, just like for his Diastat in case of seizures They make it even more difficult than it needs to be actually, but I remember well, how overwhelming it was for me at first. The first time we changed the MicKey ourselves, DH and I felt like Woody Allen and Diane Keaton in "Sleeper", cloning the nose, absolutely, ridiculously, in over our heads.
Aidan's trunk and neck tone is as floppy as a newborn. His esophogus is like a wet noodle too. He prefers being held to being left alone, no matter how comfortablly positioned in supported seating, unless he's on the move, or being face to face entertained.
I'm 5.2", yet his birth mother was 5'10" and his grandfathers were 6'2" and 6'4". Who knows how long his trunk will become and how he can be supported, transterred and safely transported, if Aidan reaches his growth potential, NOT THAT I WOULD STOP IT.
A man with the size of a linebacker and the strength of a 3 month old could indeed take a Village.
I can understand fighting policy and know that OBVIOUSLY, we all need to advocate for natural disability rights. I just can't get with condemning the girl's family for their unique medical solutions. I haven't walked a mile in their shoes, but I'm carrying a huge weight of resposibility myself.
What do people think about Fundoplication? I'm so afraid! They're talking about some time in early December too! I'm torn.

lisa6wks

11-16-2006, 06:04 PM

Heather,
My understanding is that the fundoplication is counterindicated when the child has delayed gastric emptying, but I know a lot of people have found it to be a huge help for their child.

Lisa

tgrimes

11-17-2006, 12:09 AM

Heather,
You bring up some good points, but I think we have to draw the line at doing an irreversible medical procedure that is borne out of convenience to the caregiver. The idea that it would be beneficial for the patient is just an idea, and can't be proved.... there is no guarantee that the caregivers will not die in a car accident, decide against homecare in a year, etc.
I'm finding that the most controversial thing here - any irreversible medical procedure needs to be for the patient, not the caregiver, unless informed consent is possible. That's what crosses the line.

Heather

11-17-2006, 10:33 AM

Yeah, maybe you're right. Surgery is too brutal anyway. I personally don't object to hormonal treatments, in some cases. I think limiting growth is done all the time, without surgery though.
When Aidan turned 1, I had finally managed to get him a bit plump. I didn't want to change a thing and would have been happier if he became fatter. It was summer and I felt he needed spare weight for the cold and flu season ahead. His nutritionist and Dev Ped, on the other hand, insisted I reduce his calorie intake, saying his potential mobility would suffer. So, against my own intuition, I changed his caloric intake. BTW, I risk being "non-compliant" if I don't follow doctor's instructions and the insurance coverage of the special formula, etc. It's worse for me than a birth mother, because I always have caseworkers breathing down my neck.
Well, he got sick that fall, with one upper respiratory infection after another and ended up lossing weight and then pretty much staying the same weight for another year. Now, I just keep up the flow. I've heard other parents with the same complaint. I know it's the trend to keep kids like Aidan lean, after some attention to the growing obesity problem of some disabled kids.
I'm so conflicted about fundoplication surgery. Last night, he had terrible reflux, didn't sleep well and had to be repositioned and have his feeding repeatedly paused. My back is killing me.
Anyway, this growth dilemna is an interesting topic.

peglem

01-05-2007, 12:12 AM

Just thought it would be good to add the parents' perspective to this:

http://ashleytreatment.spaces.live.com/

milivica

01-05-2007, 02:05 AM

While reading the parents article, and looking at the girl's pictures, my first thought was "they really didn't have to explain themselves" so I appreciated that they did.

I do believe they did this first for the sake of their daughter. How right or wrong it is morally or ethically...I can think of arguments for both sides in this case. I still do not feel, as I didn't when I first heard the story, that I can support or condemn what the parents did. I think I'd have to experience living their life to do that. I don't think what they did was all wrong. I think after what I read what they did was mostly right given the options. Which, in a perfect world, loving paid for caregivers would be an option, and they are not.

I have to get to bed...I'd like to read a lot more of the responses on this thread, especially some I skimmed from (formerly) Alflamb. I didn't realize there was anyone else here that got stuck in an asylum as a kid.

Isabelle

01-05-2007, 11:12 PM

Mili, (((((Editing to add, reading that you just learned that someone spent their childhood in an institution and now group homes are considered mini-institutions I brought up my son's "treatment" in a group home))))) just remember that Danny was abused at the group home. He was chemically restrained, physically restrained, physically abused, emotionally, verbally abused, neglected, etc. The more we objected the more we, his parents, were mistreated and threatened. Anybody who tried to help were threatened and I can go on forever.

((((These are general comments))) If there were more honest caring support for disabled children, these parents wouldn't need to stunt her growth (((or killed their children))) and if the government were better informed, wouldn't let agencies and psychiatrists to sedated or stimulate children out of their minds. Yes, parents can decide to drug their children but they have to be full informed of the adverse effects, something we were not and we were lied to (((That is reference to our experience)))

Adding: I haven't heard among the autistics I have know of any female being sexually abused but I read in the papers of cases of young female disabled being sexually abused and impregnated, so the danger is there. Danny was not sexually abused but was taken to a strip club and before HE was accused twice of sexual misconduct which is another danger that any male with a disability could face.

Braindrain

01-05-2007, 11:57 PM

Here's the latest news about this story:

http://www.msnbc.msn.com/id/16473471/

Of course, out of all the people interviewed (parents, doctors, other family
members), not one of them has even bothered to answer the single most
important question:

What happens to this girl when her parents are dead? Who's going to
take care of her then? Does she end up in a group home at the mercy
of the staff who just see her as another resident and not a human being?

Then again, her own parents didn't see her as a human being, why should
anyone else?

AKF

01-06-2007, 12:03 AM

I agree with Mili that I can see both sides of the issue. I think that if the parents went to this extreme now, they would surely make arrangements for after they are gone. Of course, as we all know, we can make arrangements, but there is no absolute guarentee that they will be carried out. I guess the best we can do is to do our best, prepare as best we can, and then pray that it turns out all right.

I really have to believe that these parents did what they thought was best for their child. We all have to make decisions about treatment for our kids, and how can you ever know that you're doing the right thing?? Not 100% sure, anyway. We just do what our heart tells us is the right thing.

milivica

01-06-2007, 12:04 AM

Isabelle, I know the plight you've had, trying to get Danny to be treated properly, and not abused :( ...and I know that's an understatement too.

Overall, especially knowing stories like Danny's, and given the total lack of good alternatives, I can't say that I wouldn't do the same thing in their shoes. It's so hard to say. I don't condemn them, that's for sure.

I have enough decisions to make for my kids, have made enough mistakes along the way. I'm fortunate I don't have to make a decision about 'altering' my kids, even if it would be for their good, I can't imagine it is an easy decision. It's been bad enough just making the decision to 'alter' Vince with meds, and I'm still very guilty about it, and not always confident I did the right thing for him.

Mili

LIZARD

01-06-2007, 12:07 AM

What happens to this girl when her parents are dead?

I'm thinking that she's not expected to live more than a few more years, so that's not really a concern, but how about other things like throwing her body into meno at such a young age? Her bone age is 15 yo, according to what I read. Imagine what it'll be in another 5-10 years. :( The rate could seriously accelerate when meno is induced in one so young, and I'll bet it never occurred to anyone to consider that. :rolleyes:

LIZARD, sad about the whole thing :(

Isabelle

01-06-2007, 01:37 AM

Braindrain, caring for the nonverbal autistic is excellent bussiness, everybody can say of them or do to them anything and get away with murder, literally. The poor non-verbal have only their "behaviours" which can be "interpreted" as benign by kind staff or mental illness, or declared a danger to themselves or to others by some staff in order to sedated and get more money. The more "complex" the case the more money the government releases and it goes to administration or the state-paid psychiatrist. The non-verbal autistic are commodities, a mean to get money from the state. They are non-humans for some staff I heard them describing the autistic as "animals", so I know.

Sorry, Mili, the next paragraph were comments in general.((((I edited the former post to clarify))))) Again, Sorry!

tgrimes

01-07-2007, 02:15 AM

I still believe this to be the hokiest story ever, it's like the biggest urban legend of the medical ethics community.

Supposing I bought into this, though, and on the assumption that you can do a new, radical, unproven and unprecented procedure based on the premise
that the goal is to help the child whose biggest challenge is "discomfort and boredom"; here are some procedures that could likewise become available to the parents of disabled children:

1. permanent irreversible 'auditory dampening' because the child is adversely affected by sudden or specific noises

2. permanent irreversible 'nasal cavity curretage' for a child with frequent smell overload.

3. laser hair removal for thos kiddos who hate the haircut thing.

... and the list goes on.

AKF

01-07-2007, 05:53 PM

CNN is supposed to have a special report on it Monday at 8 Eastern Time. I plan to record it so I can watch it after I pick Alicia up from dance.

Isabelle

01-08-2007, 02:39 AM

tgrimes, please, that new word i am reading "hokiest" is use to mean false information?

milivica

01-08-2007, 02:52 AM

Hokiest, like a big hoax.

Laura P

01-08-2007, 12:17 PM

FWIW, I should have an opinion about this, but I'm getting more protective about my emotional state. This story is sad, the parents have made a no-going-back decision, and some doctors somehow agreed to it. But, it doesn't affect me personally--I don't know these people, would never make their choice, and life it too short to get outraged over something miles away that doesn't hurt any of us or our kids.

On to happier things. Like "Grease: You're the One that I Want" :rolleyes:

Isabelle

01-13-2007, 09:10 PM

the easiness in which was done endanger the lives of all disabled. from the extreme of killing disabled children, to middle prescribing drugs that only sedated and/or stimulated them out of their minds (or bloated them into diabetes), to severe, to operate to prevent growth, the end is just to make them easier to care for, dead is even easier. as we dehumanized the disabled, we also lose our humanity.

as i said caring for the adult non-verbal autistic is such easy business, they can't object, the agencies can say whatever they want of them and/or do whatever they want and get away with it. the idea is to present them as complex as possible so they received more money, deceiving taxpayers/ donors and keep the autistic asleep.

from helen anderson the star.com column:

"but the theory that people who are already at disadvantaged have less to lose doesn't hold. if you rob a small amount from a poor person, you could be taking all they have."

she continues: "in an editorial on "the ashley treatment" in the archives of pediatrics and adolescent medicine,jeffrey brosco of the university of miami argued: "if we as a society want to revise the nature of the harrowing predicament that (the parents of children with disabilities) face, then more funds for home-based services, not more medication, is what is called for." she ends with "well said" and i agree completely.

tgrimes

01-13-2007, 10:57 PM

This story is so crazy, it took a long time for me to believe it was true. I couldn't accept that an ethics committe reviewed this, and then the procedure still took place.
I saw a show on cnn's Nancy grace tonight about it, it was pretty good.
I think if this was the parents idea, it was just an idea, and should have ended with Dr Gunther. Why it got past him, and then an ethics committee is really the mystery.
The Treuman Katz Center for Pediatric Bioethics in Seattle, where the ethicist Dr Doug Diekema is clinical director, is the first in the nation to study pediatric bioethics. One of its three main purposes is to:
"To train the next generation of clinicians and bioethicists about pediatric bioethics"
:eek: :eek::confused: :eek: :eek:

Seattle Children's hospital is one and the same that last year had the state take custody of an infant so they could force a procedure not wanted by parents... remember the 'gunpoint medicine' stories about the mom who kidnapped her kid out of the hospital?
All this is funded in large part by the generous donations and fund-raising activities of Melinda and Bill Gates.
If no one else does anything about it, I wonder if they could send some kind of message... and would they even want to.

V'rie

01-14-2007, 04:52 PM

I know this had to be an awful decision for the parents to make. I have been reading about this for a bit, and have some issues regarding how I would think of it. I'm going to be long-winded, almost thinking aloud, so skip this if I ramble!

First off, I am pretty certain that this child's disabilities are WAY beyond the autism spectrum. I work in a self contained high school special education classroom. One of our students is a 20yo who probably is pretty similar to this girl. She rarely moves except to startle in response to loud noises or light changes. She sits and stands only with supportive equipment. We use a hoyer lift to move her. She is fed via feeding tube. She is legally blind and completely nonverbal, and has never been capable of any independent movement or verbalization. She is also epileptic, has scoliosis, and has multiple allergies. We believe she responds to soothing touch and voices, although doctors disagree. I am unsure of her complete diagnosis, as that is not really necessary to care for her. In reality, this girl was not expected to survive her first few years, even with assistive care. Her parents and siblings cared for her at home for over 5 years. Eventually, she was placed in a nursing home, but her family is still highly involved in her care. This is what I think of when I read the article.

The girl I mention became too hard to care for at about age 5. Today she weighs about 140 pounds at just under 5 ft tall. She is very difficult to move and position, even with lifts. We regularly have to move and reposition her manually, which takes two people. I do not know how her parents could have feasibly cared for her at home.

When I first read the article, I was amazed that medical "experts" would allow or perform this kind of procedure. As I considered, I wonder if our girl's parents would have considered this for her. Even after 15 years in a nursing home, I believe they would bring her home if they could.

I guess what I am saying is that I cannot imagine trying to care for a child like these girls myself. I know so many different children with so many different parents. I myself have children with physical and behavioral issues, and am thankful every day that I do not have to make some of the decisions others face. I am trying to say that I wish the parents and their child the best and hope and pray that this decision works for them, even if I do not think I would make the same decision.

In addition, with all of the decisions we make for our own children that others think is wrong:

My daughter is medicated for ADHD, but not for OCD or tics.
My son is not medicated for Tourette's but wears binaural hearing aids.
Despite the fact that my son's binaural hearing aids work well for him, I am considering voluntary surgeries for him to receive an implant hearing aid, in order to reduce some of his hearing difficulties.
Rather than accept home health care assistance for one to two weeks, I am changing the dressings on my son's appendectomy myself, having demonstrated to doctors and nurses that I was capable of doing so.

Having spent the last week in the pediatrics unit at our hospital, I have seen some drastic situations. A parent woke up one morning to find that her daughter had reacted to chemo for leukemia with total paralysis. Now they are second guessing THAT decision. A young man came in with a broken neck, acquired during wrestling practice as a freshman in high school. My son wants to wrestle in a few years, and I consider it good for his other issues, but now I have to wonder.

Realistically, I do not believe there is a decision any of us have ever, or will ever, make that will not be second guessed or criticized by someone else. Therefore, I respectfully have to withhold any judgement of the parents of this child and wish them only the best. And to always be thankful that my situation and circumstances do not require anything on this scale.

Lara

01-14-2007, 05:25 PM

Among many other concerns I have, I worry about what type of precedent this will set. I just noticed when reading another site for an article that Isabelle listed that someone has registered a domain called "pillowangels" so obviously this is going to be a very long discussion for years and years to come. We realize this isn't about autism, but I think people have the right to voice their feelings. When I was reading that other stuff, I was reminded of certain cases where people with autism were treated so horrifically. None of this is news to us, but there have also been cases of castration e.g.

Castration lawsuit
http://www.cbc.ca/news/story/2000/06/08/bc_castration000608.html
Last Updated: Thursday, June 8, 2000 | 12:22 PM ET
CBC News
B.C.'s public guardian and trustee is suing a mother for having her son surgically castrated. Two doctors and the Nanaimo hospital are also named in the suit.

The man has been disabled since childhood, as a result of severe brain damage. His mother agreed to the castration three years ago because of his aggressive behaviour, and her assessment that he would never be able to care for a child.

B.C.'s public guardian and trustee Jay Chalke says the action was simply illegal. "The law in Canada in this regard is quite clear," he says. "Fourteen years ago, the Supreme Court of Canada held that neither a substitute decision-maker nor the court could authorize a non-therapeutic sterilization for an individual who is not able to give their own consent."

I can think of numerous other scenerios where something like this might be used in the future and that concerns me greatly. I have seen some remarks suggesting that people who aren't in the parent's situation should basically be quiet and mind their own business, but I don't believe that's the right way to look at the whole situation. When this discussion first began on autism forum, all we knew was one newspaper article and one pubmed article which was only about 10 lines long. Since then the parents have publicised their daughter's situation and it's been in the news everywhere. BTW, There are parents on the Child Neurology forum who are in similar situations (or have been) and there is also a discussion there, Vrie.

I wasn't going to comment further on this forum about this situation but I guess I just did again. I think everyone should be able to have an opinion about the "Ashley Treatment".

Lara

01-14-2007, 06:25 PM

I just thought I'd post this. I found the article well written and it addressed many of my own concerns.

Vol. 160 No. 10, October 2006
Archives of Pediatrics and Adolescent Medicine

Growth Attenuation
A Diminutive Solution to a Daunting Problem

Arch Pediatr Adolesc Med. 2006;160:1077-1078.

http://archpedi.ama-assn.org/cgi/content/full/160/10/1077

"Although we believe that attempts to attenuate growth are ill advised, we applaud Gunther and Diekema for publishing this case report. By focusing on a critical issue and beginning the debate, they help to advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. If high-dose estrogen treatment is on the right track, the collective community response will bestow general approval on growth attenuation; if not, the criticism may suffice to proscribe this mode of treatment. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."