Monday, February 1, 2010

Working Through Issues....

The next few posts will be dealing once again with the Ashley treatment or growth attenuation. The very particular reasons for me doing this will likely (hopefully) become apparent within the next few months. I find that blogging has assisted me tremendously in examining and re-examining a number of issues relating to disability. It helps me clarify myself to myself and the comments that sometimes ensue are also extremely helpful with this process. So you will be reading "rough drafts" of my thought processes. My goal will be to ground myself thoroughly and intelligently in issues pertaining to the procedures Ashley endured and how these procedures impact the world outside of Ashley's particular life.

I welcome comments and emails pertaining to these issues. I will tell you right off that no one will ever convince me that growth attenuation is a viable treatment for anyone at any time. Don't bother trying to change my mind. I am always open to insights and ideas, however, and will accept anything that is intelligently written (as opposed to accusatory or angry). I will also remind everyone that my daughter requires the sort of care that Ashley requires: full on, 24/7 care. She is not even as stable as Ashley is...she has never been "a pillow angel"...never having stayed passively on any surface, thank you very much.

I have been forcing myself to read, in its entirety, the blog Ashley's parents set up some years ago. This has been an exercise in self-control that I can barely express in words. The whole thing is so intensely appalling to me, that I find it difficult to read material that is so happily and enthusiastically in support of the "treatment". It would be like forcing you to look at child porn in order to find and help the children in the photos...that's how bad it is for me.

This is not to say that I think the parents are evil or in the class of child pornographers so don't anyone get their knickers in a knot. It is clear that the parents love their child (possibly the incessant expressions of their love for her is a bit cloying) and it is obvious by the photos that Ashley is well cared for...she really is a gorgeous child. Absolutely beautiful. It will not be my goal to demonize the parents or their decision. They insist it was all done to benefit Ashley...so be it. What is done is done and cannot be changed. What must be addressed at this point is how to keep this from happening again...or keep it to an absolute minimum. I am, after all, a realist and there will always be circumstances where things happen that shouldn't but in the end do...because of time, money and determination.

The web site set up to defend the so called "treatment" is, in all honesty, the most boring read I have ever come across. That, for me, was a hurdle in itself. It has
rarely been updated, now that the publicity has died down. Most of it consists of supportive emails and T.V. interviews, articles and such. It is unimpressive but it lays the groundwork for everything that will follow in the future, so it must be read and analyzed.

Right off the bat, what stands out in my mind about the site is the frequent reference to Ashley's supposed mental age and her believed to be static status as a "baby" or as an "infant". It seems this is almost the crux of the matter...it defines the procedures in many ways. A baby's mind should equal a baby's body. The removal of all things indicating growth and maturation is, therefore, justifiable. Everything that indicates a mature body is deemed uncomfortable...breasts, menses, size. If you can't "understand" your status as an adult, you can't handle what adulthood brings, therefore you must eliminate adulthood.

There are three things here that come to my mind. First, I find the arguments put forth about the terrible discomforts that Ashley would endure from having a fully grown woman's body to be overblown...they are immature, speculative and full of stereotypes. For instance, if a "restrictive bra" is a problem...get a better bra! Wear a tight camisole! Buy straps for the chair that accommodate a woman's breasts...etc. I don't want to detail any of this here. A good site to check out is this one, for more deconstruction of these ideas. They do not stand up well as reasons for making these procedures available to others.

The fact of the matter is that children with severe limitations are going to experience discomfort because they cannot scratch an itch, take a hair our their mouth, deal with a stomach cramp...it is one of the awful realities of severe disability. You could argue that removing what discomforts you can, then, has some value. No. Why? Because it just goes on and on, people. Legs cramp, teeth rot (let me tell you, based on their logic, I am surprised they did not have her teeth removed...they are a huge source of difficulty and discomfort for a tube fed child), contractures develop, clothes are lumpy, diapers scratchy...it's just endless. At what point does one stop removing things that are uncomfortable? To make someone comfortable, you create an environment and provide care that provides as much comfort as is possible. To resort to extreme surgical procedures to avoid discomfort....before the fact, mind you...is ridiculous. Adulthood...maturation...is not the enemy.

Secondly...the belief that a brain is static in its development is patently false. Science has proven, beyond the shadow of a doubt, that a brain is a plastic environment, that we understand very little of its power and function, and that it is possible to rehabilitate a supposedly dead brain back into function. I need only refer you this one book as proof: "The Brain That Changes Itself" by Norman Doidge, M.D. And I quote:

This book is about the revolutionary discovery that the human brain can change itself, as told through the stories of the scientists, doctors, and patients who have together brought about these astonishing transformations. Without operations or medications, they have made use of the brain's hitherto unknown ability to change. (p. xvii)

I don't expect that parents of children with severe disabilities must wait for miracles in science that may or may not help their children. I expect parents to understand, though, that their children's brains are not to be understood as static in their development. Though the development may not be linear in progression or demonstrably typical, there is development of some sort via the sheer experience of life. The more you provide stimulation of any sort, the more the brain creates, in whatever way, fodder for its growth and viability. This is irrefutable fact. It is also fact that those who make decisions about ability based on brain scans are often, if not always, wrong. I can tell you that my daughter's frontal lobe is nothing more than toothpaste yet she can read, write, talk, learn new things, sing in tune, laugh at jokes...on and on and on. Not bad for a child whose prognosis, from the specialists was death...or a vegetative state.

My daughter is also a perfect example of how careful one must be in discussing "mental age". It is appropriate to use the expression in only the most general sense in describing an individual with cognitive challenges. My daughter's thought processes are all over the place. She can't tell you what she had for breakfast...but she will say "f**k" when she sees Daddy has a frown on his face. She can read long, new words, but can't answer a question immediately after having been given an answer for it. She still likes to watch "Zaboomafoo", but gets some jokes on "Friends"...and she is totally in love with our chiropractor. Absolutely loves boys. She is 15 after all...in some ways.

To summarize, it is not correct...it is not science to attenuate the growth of a child because of their perceived cognitive ability and the assumed inability to "deal with" the maturation of their bodies. Cognition is not static, nor is it measurable in a non-verbal child with severe multiple challenges.

Next post will address the third idea I have.



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