Friday, January 05, 2007

Pillow Talk-The Debate Over the Ashley Treatment

“About an hour into the movie, I am holding his hand and realize that his shorts are wet and he needs to be changed. I suddenly realize that while I brought his diapers, I would be unable to change him. The restroom, while it does have a handicapped stall, does not have a bench or any place to change Dear Son. While I could lie pads down on the washroom floor and change him there, I have the problem of not being able to dead lift his 140 pound body off the floor and back into the wheelchair. Therefore, I can not change him here and we must now leave the movie and go home. There isn’t another alternative. He won’t sit still with a wet diaper and I can’t expect him to sit another thirty minutes without being changed. We leave the movie. I am frustrated. What was supposed to be a fun time out had to be cut short because there weren’t adequate facilities to change him.

Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.”

This was an excerpt from a post I wrote earlier this year titled, "The Ant Bully” where I detailed how difficult it was to go to the movies because there wasn’t an adequate restroom to change Dear Son, a 5’9” 140 pound severely disabled teenager. What I didn’t know at the time, was that in Seattle, Washington, there was a radical new treatment that parents of a severely disabled daughter used that would have solved this issue. Instead of creating facilities to change severely disabled children, we could, well, keep them small buy giving them excessive hormones to reduce their physical and sexual maturity along with other surgeries to prevent the above situation. If this were done, then I could take Dear Son on more outings, he would have more fun and I could take him to any washroom to change him. And, here’s the best part, I wouldn’t have to put him in an institution and I could keep him at home. And no, this would not be to make my life easier, it would be to improve Dear Son’s quality of life. Problem solved!

This is ludicrous of course but is designed to illustrate just how ridiculous the logic is in the “Ashley Treatment”. (This story has been covered in multiple media outlets and you can read about it here.) As you know by now, this is the case of a couple who decided that if they could keep their daughter Ashley “small” that they could continue to delight in holding her in their arms, take her on more trips and she’ll have more exposure to social gatherings “in the family room, backyard, swing, walks, bathtub, etc.” Ashley is a nine year old girl that has static encephalopathy, a severe brain impairment and she can not walk, talk, keep her head up, roll over or sit up by herself. She is fed through a tube and they refer to her as their, “Pillow Angel” because she stays right on her pillow where they put her. (Dear Son’s abilities are identical to Ashley’s although his were caused by the ARX gene mutation.)

So they chose to give her a “growth attentuation” treatement, a radical treatment to keep her height at 4 feet 5 inches and her weight at 75 pounds. The treatment also included a hysterectomy, surgery to remove her breast buds and subsequent high doses of estrogen. They dub this treatment, “The Ashley Treatment”. Her parents think it’s a humane move and her father added, “People think it must have been a horribly difficult decision to have the treatment performed. It really wasn’t.”

According to the Chicago Tribune, the separate ethical issue is whether or not a severely disabled person’s life might be improved by having his or her growth impaired. The treatment was also discussed by Dr. Jeffrey Brosco, a pediatrician at the University of Miami, who was co-author with Dr. Chris Fuedtner, in an editorial criticizing the treatment in the October issue of the Archives of Pediatrics and Adolosecent Medicine. According to the Chicago Tribune, “Brosco and Feudtner wrote parents of severely disabled children could feel pressured to have their children undergo it, to avoid the future choice of whether to send the fully grown child to an institution”.

The parents have refused all media requests for interviews and chose instead to explain his position in their blog.

As the mother of a severely disabled teenage boy, I think they are totally missing the point. The parents go to great lengths to defend their choice for treatment arguing that it’s not to make their lives or the caregivers lives easier but rather, to allow their daughter to participate in more activities with the family and in social situations.

I think keeping their daughter small is a poor way of treating a bigger issue. The issue is not that we need to stunt the growth of all severely disabled children. Are their lives not hard enough? Have they not been through enough that to have “additonal” surgeries to remove any signs of maturation? I mean, what’s next, cutting off their legs and arms so they can roll over easier? Would that make it easier for Dear Son to swing, or to go to the bathroom at the movies?

The real issue is not whether we should begin to these treatments. The "Ashley Treatment" should start and end with Ashley. No severely disabled child should be subjected to that abuse.

I have trouble with the case for many reasons. As Dear Son’s mother, I consider myself his number one advocate. Because Dear Son can’t speak for himself or rather defend himself, I am very protective of him. Who is Ashely’s advocate? If it’s not her parents, who advocated for Ashley in this case?

I have great difficulty understanding how the medical profession could have argued either way that these treatment choices on the basis that her quality of life would be better if she were smaller. How did they go about discussing what items would in effect “quantify” a better life?

I can’t believe that stunting the physical and sexual maturation would be good for a person’s sense of self. Where was the child psychiatrist in this discussion?

What role did a school psychologist have in this discussion? Dear Son attends high school now and one of his favorite activities is when they take him in his wheelchair in the hallway and he gets to look at the high school girls. Dear Son is the same size as other high school boys and does the same things they do, look at pretty girls. But how would it be if he still looked like a little boy, sitting in the hallway? I can’t imagine how it will be for Ashley when she sits in junior high and high school and all of the other severely disabled kids in her classroom will be going through puberty and growing up. She will be the one that doesn’t grow and is small. How will she feel? One of the hallmarks of puberty is being like everyone else. Where will Ashley fit in when she’s an outcast with her peers? Is this really in Ashely’s best interest and Ashley’s best quality of life?

What happens at school? One of the goals of all special needs program is to help these children fit into society and to learn basic skills of daily living. Does keeping her small make her an outcast and assist people in treating her like a baby or a child? Is that in Ashley’s best interest?

And if the father was that interested in being able to lift his daughter, and giving her a better quality of life, why couldn’t he take up a weight lifting program? I am a single mother and I lift Dear Son who is 5’9” and weighs 150 pounds. If I recall, Ashley wasn’t expected to exceed 5’6” and 125 pounds. Wouldn’t that have been another alternative to the “Ashley Treatment”? I would think if he could lift her then she could go into the family room, on outings, get into the swing in the backyard, etc., all things that they felt would increase her quality of life providing they could lift her.

And finally, the real issues behind this case have nothing to do with Ashley herself. We do a lousy job as a society in taking care of these children and their parents/caregivers. The real issue is that it is a lot of work to care for children like her and children like Dear Son. We expect these families to care for these children twenty four hours a day without any help. We have inadequate Respite programs and a lack of qualified workers. We need to give parents a break. We have many health plans available and yet the trend is to eliminate private duty nursing.

We don’t have any daycare for disabled children; we have no after school programs for severely disabled children. We need to have daycare that is safe, reliable and good for our children; then as parents, we can work full time. We need to be able to save tax free for our own retirement and that of our severely disabled children. The rules can be simple. If you have a child that meets the requirements for SSI in terms of disabilities, you can save tax free in a 401(k) plan for your children. Hardship withdrawals would be allowed.

We don’t have public restrooms that allow you to change a teenage child or an adult who can not stand up. We don’t even have them at hospitals that treat these children and yet every facility has a care statement in the emergency room that says they treat their patients “with dignity”. We need to require that every medical facility and public place that gets federal funding have adequate rest rooms for every person, regardless of their physical ability so that they can be changed with dignity and they can have the quality of life that this surgery is designed to enhance.

We need to re-think our health plans. Many plans are limiting funds for durable medical equipment, limiting physical, occupational and speech therapy visits and eliminating private duty nursing. We need to expand our Home Based Services program along with our college savings plan and re-name them “continuing education plans”. This would allow us to save money for our special needs children to get additional physical, occupational and speech therapy they need to become semi-independent or independent adults, less reliant on government funding.

Finally, I understand more than anyone the challenges of caring for a severely disabled teenager but we need to meet our challenges head on, not stunt the growth of our children, to make them easier to care for under the guise it will give them a “higher” quality of life. That is just plain, barbaric. Until then, I’ll continue to buy my son his cargo pants, with the 34 inch inseam. I’ll continue to lift him into his wheelchair and bring him into the living room every day, so he can spend time with me and then lift him into his bed at night, gently placing his head on his pillow. And if Dear Son could talk, he’d tell you himself that the Ashley Treatment is just plain wrong. I’d call that, “pillow talk”.

P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.


Anonymous said...

Dream Mom your are so right on so many levels. I cringed when I read this story. I cannot lift my son who is now close to 6 feet and 180 lbs. but never would I take away his right to grow and develop into the person God intended him to be. Altering the physical being of your child to meet your needs as a parent cannot be the answer.

Anonymous said...

I think you need to run for office someday! You're definitely smarter and more compassionate than most legislators now in office.

Anonymous said...

You said it! My son is just a baby and I am already finding out just how limited funding and facilites are for children and adults with special needs. That's what the REAL problem is and that needs to change.

Anonymous said...

What a wonderful post. Thank you.
Have you read "Sigh." by Penny L. Richards? Your two great minds think alike. You can find her post by following the link below, then scroll UP to the next message.

I'd like to share with you an excerpt from "Say It Ain't So" on the Planet of the Blind written by Stephen Kuusisto.

When we imagine that by means of surgery and drugs that we're doing a good thing by making another person's body and life fit our own convenience we are essentially confusing utility with ethics. Ashley, who cannot speak for herself has been rendered an object in this process. Those in the medical ethics and disability communities who see a connection between this procedure and eugenics are in my view not wrong. I'm very troubled by this story and I sense that my gut reaction is truly the ethical position.

Anonymous said...

P.S. You've got my vote!

Dr. A said...

Thanks so much for your insight on this. It is impossible for me to sit in judgement, because I don't really know what you or they are going through. Great post!

Mete said...

I understand your feelings, and I completely agree that the support system for parents of special needs children is incredibly inadequate. I hope this story is creating enough buzz - positive and negative - that it will effect important changes. Then again, I'm not holding my breath. Within a few days, the next "big story" will hit the papers and Ashley will be long forgotten.

However - and clearly this will be unpopular to say here - I don't completely disagree with what these parents did. I wouldn't necessarily do it myself, but I also can't say it was definitely wrong. Having a son, I have different concerns about his development than I would if I had a daughter, but I can relate as a woman myself. Some of these treatments don't seem that extreme to me in an effort to reduce her future discomfort.

Also, I can see your strong devotion to Dear Son, and your concern about his sense of self, but I think every child is different. For example, my son has no awareness of the outside world. He doesn't even recognize my husband and I as his parents, even by our voices. He never has. I don't believe he has a "sense of self" as we think of children having. It is hard to accept, and harder to live with, but it's a fact. I know you said Dear Son is just like Ashley, but in many ways, she sounds like my own son as well. And I know - even if he never grew another inch - he would never know he was different from other children, because he doesn't even know they exist.

As far as advocating for my son, I make medical decisions every day that could be considered questionable by others. Should I try that new seizure med when it is known to have such terrible side effects? Should I put him through another hip surgery when it probably won't work anyway and will mean his bones will be that much weaker in the future? He cannot make these decisions for himself. It is up to me as a parent to decide. And if he were not as impaired as he is, he might very likely have made different decisions. The problem is, we'll never know.

I think this debate has a lot more gray than black or white. A lot of people are cheering it as a cure for all disabled children, and a lot more are screaming that it is abuse and even suggesting the parents should be arrested. However, none of us know the true situation in that home, or truly how severe Ashley's condition is. I do believe they love Ashley. I do believe she will have some benefits from these treatments (less bedsores, no pain of periods, no chance for breast cancer). And I also do believe they could have forgone these treatments and learned to cope with her at her full adult size.

The question is - would that have made her life easier? Or would it make us feel better because we weren't "tampering with God"? Because every medical intervention I do for my son is tampering with God, and I'll be damned if I'm going to stop trying to make his life better, however I feel is necessary.

Thirza Cuthand said...

I like your post, it's good to hear from someone else who has someone with these disabilities in their lives. I was getting discouraged by reading some messages at other blogs from parents or friends of parents who thought this was a good idea. I feel so bad for Ashley that her parents didn't take the time to consider who she is and how she will develop as an individual, irregardless of her disability or perceived mental age.

Anonymous said...

Eloquently said as always, Dream Mom.

Initially, I thought what Ashley's parents did was barbaric. But after reading more on the subject, I don't feel that way anymore.

They are doing what they feel best for Ashley. You do what you feel is best for Dear Son.

Each child presents their own unique challenges that parents deal with to the best of their abilities. It really comes down to perception.

Ex Utero said...

Eloquent as always. I have a post up that is in response.

Ben and Bennie said...

Count me in with Mete and Kath.

I have several posts already on the topic particularly with the way the media is handling the story. It has been sensationalized to make Ashley's parents look like monsters. I ask each of you to read the entire blog and then read some of the comments.

Dream Mom, although I disagree with your opinion about the treatment we both understand that this is an opportunity to draw attention to our plight as parents of severely disabled children. Reading the begining of your post had me shaking my head in agreement. Why are there not facilities for changing your son in this day and age? Why are all us going broke and have no way to save for retirement?

We ARE the silent majority and there is a good reason we are silent. We are too busy trying to live our lives as "normal" as possible while changing the diapers, tube feeding, giving treatments, calming the seizures, loading and unloading the wheelchairs or our sons and daughters. That is if we're not traveling back and forth to the hospital or the countless trips to some specialist.

If you don't mind I will be linking to your site as one of our "blog buddies." I will be returning often.

R said...

Well said, Dream Mom.

I'm horrified by what has been done by Ashley X.

As a disabled person, it horrifies me.

As someone who counts someone with profound physical and intellectual impairments amongst her closest and most dear friends, it horrifies me.

As a woman, it horrifies me.

I've blogged about it too, just a little: here. It might interest you to click through to the Ouch! site and read what many other young disabled people and adults have written, too.

R said...

Oh, thought I'd add a PS:

I haven't voted for you as 'best patient blog' because as I see him, Dear Son is many things - a handsome young man, a high school student, a disabled person, your much beloved son - but the one thing he spends relatively little time being, as far as I can tell, is a patient.

Dream Mom said...

Thanks, all.

Becca-Dear Son is indeed a patient-our medical bills exceeded over $300k in 2006. His MRSA pneumonia hospitalizations are on the front page of the blog. I don't always write about all of his medical experiences though. Peace.

R said...

Thanks for replying so quickly, D.M. I know he's been very poorly but I guess I'd consider a patient to be, say, someone having ongoing treatment for an illness whereas as far as I understand Dear Son has been ill - several times recently and indeed severely - but it's not really (thankfully!) a part of his identity the way it is for, say, Trick Cyclist or Cancergiggles.

Anonymous said...

a chemical and surgical solution to society's fauilure is not an answer...
great blog, and i did vote for you!

Redneck Mommy said...

Pleased to meet you Dream Mom. I'm a Canadian mother who was blessed with the birth of a beautiful, wonderful severely disabled little boy.

He was the light of our lives until the minute he passed away last year. When I read your opening paragraphs about the lack of toileting facilities for special needs folks I cheered!

Unfortunately, I never had the chance to experience the hardships or the wonderment of watching my boy live and grow. But my thinking is forever altered, as yours must be too. My husband and I are currently waiting approval to adopt a special needs child, so that we may be blessed with the beautiful love of a special kid once more.

But as for now, I'm in a weird position, no longer the active parent to a handicapped child, and a mother in waiting for a severely handicapped child she has yet to meet or may not have been born yet. I'm not sure I even have the right to weigh in this debate.

But I'm mouthy, and my son couldn't talk, had bone deformities, facial and chest paraylsis, tube fed, suctioned, diapered (he was shy of his 5th bday when he passed), wheelchair bound, splints, etc....
So I have been down and around the block. And I have the unfortunate knowledge of knowing first hand what that scary drive to the ER feels like when you walk out with nothing but a plastic bag and a kleenex clutched in your hand.

That said, I'm weighing in. The debate hasn't reached my neck of the woods just yet. And I'm a newshound, so this surprised me.

The mere thought of a parent altering their child's body and future in the name of convenience repulses me. Had my son lived he was gonna be a big man. He was a big boy! And not once did I think or wish that he would stop growing to make mine and his life easier.

But I also understand the Ashley's parent's decision to try and help their daughter fit better with their family and make a hard choice. How many times did I make a medical decision that somebody disagreed with? More times than not, and some very serious.

While I can understand their decision, I can't understand their justification. The ramifications and impact on their daughter takes my breath away.

The only upside to what they did to their daughter in my opinion is the fact that they have drawn attention to the plight of these beautiful, silent children.

Maybe some good will come out of Ashley's stunted growth. Good beyond being able to stay on a pillow her parent's like to place her on.

(I can't even imagine!! )I don't want to sit in judgement of these people, faced with the same child and same decision, who knows what I may have done. All I can relate to is my own experience and my own son. And the idea of missing out on any opportunity for growth - whether it was physical, mental or emotional - is repulsive to me.

But I am glad that a debate is raging. Because more attention, more laws and ultimately, more money needs to be funnelled towards this segment of our society.

Perhaps Ashley will accomplish a fragment of this.

Thank you for taking the time to address this, and doing it so eloquently and with such articulation. And thank you for giving people like me a forum to voice my two cents.

I'm bookmarking you, I'll be back...(Said in my Terminator voice...)

Jasmine said...

Some think that this treatment is taking away the right for a child to grow into people that God intended them to be.

But...some of these kids wouldn't be here if it weren't for the science of Medicine. God gave us that science to save them. Maybe he gave us this science to help some families stay together and make life easier for all.
I agree with dream mom though, that if you cannot look at your child in the eye and explain your decision, then you shouldn't do it.

OTE admin said...

Sorry, the parents and the doctors ARE monsters for forcing a child to undergo surgical mutilation without her consent.

Let's be honest for a change: If Ashley were "normal," there would be NO debate over this being an atrocity.

This is child abuse, and the "loving" parents seem to be bragging about what they did.

Anonymous said...

Dear Mom,

Steve and I saw you and Dear Son on CNN last night. Thank you for sharing your perspective, and a part of your lives with us all. And thank you for resisting to get "down and dirty" while conveying your message.

I've expressed my feelings on that issue on the Planet of the Blind.

Warm regards to you and Dear Son.

Dream Mom said...

Thanks again, everyone. Connie-We had a wonderful time and I sent thank you notes to CNN this morning. They told me they got a lot of positive comments. Thank you for your support.

Anonymous said...

No physician or ethicist would ever remove the healthy uterus and breast tissue from a mentall intact girl.

Therefore, CLEARLY, this was justified because Ashley is mentally disabled.

How much longer before removing the breasts from Alzheimer patients for the nursing home's convenience? When do we sign up our kids with Down Syndrome for castration and the Ashley Treatment so they're more emotionally stable during puberty? How can we get all of our PVS patients on the list for limb removal so they weigh less and can be rolled over easier to prevent bed sores?

Honestly, that this doesn't ignite revulsion in most people is actually more disgusting than what was done to Ashley!

Anonymous said...

I even question her "unknown brain injury." There is something very fishy about that. Very very very fishy.

Anonymous said...

I'm glad i finally arrived here to read some sense from a fellow parent. I can't believe how many parents agree with this surgery. I can understand the frustration that leads a parent to imagine this surgery as a solution, but I cannot understand an ethics committee that doesn't say - stop - I know you are under tremendous stress - and we need to work toward finding you more help.

As sad as I feel for Ashley, I hope that this is the wake-up call that makes people understand that the worst part of beng a parent of a disabled child is trying to find caregivers, doctors who accept medicaid, dollars for medical equipment, qualified respite care, and just simple community support.

Nothing like Ashley's treatment should ever be perpetuated on any child again. We as a nation, as a world have to work much harder than we do toward making things like the ADA not just words on paper, but real.

I have a statement of solidarity on my website that addresses this. I am also keeping track of everything I can find related to Ashley- blogs, newspaper articles, videos, and other statements from disability organizations that are apalled by the Ashley Treatment.

Anonymous said...

Oooop I entered my website address wrong....

Anonymous said...

Thanks for the nice post!

Ettina said...

"Also, I can see your strong devotion to Dear Son, and your concern about his sense of self, but I think every child is different. For example, my son has no awareness of the outside world. He doesn't even recognize my husband and I as his parents, even by our voices. He never has. I don't believe he has a "sense of self" as we think of children having. It is hard to accept, and harder to live with, but it's a fact. I know you said Dear Son is just like Ashley, but in many ways, she sounds like my own son as well. And I know - even if he never grew another inch - he would never know he was different from other children, because he doesn't even know they exist."

How do you know?
Honestly, I've met a number of developmentally disabled people, including some very severely disabled, and I have yet to meet a single person with no awareness of the outside world. I have, however, met people who I originally assumed were unaware.
I've even read a book by a parent of a severely disabled child who claimed her son had no understanding of speech while in another part of the book noting that when she said 'light' he looked at the light fixture, and things like that.

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