Friday, November 12, 2010

There are several Ashley "treatment" articles in the Hastings Centre's most recent report. Many are free to view with a simple registration. Go for it if you are interested. Each piece is short and fairly easy to read. You can come to your own conclusions. I will be commenting on each piece in the following posts.

First: "In Support of the Ashley Treatment--A Parent's View" by Sandy Walker.
The Hasting Center Report > November-December 2010 (volume 40, number 6)

This article is weak in a number of areas. I am surprised that it passed muster from the Hastings Centre.

Basically, Walker's piece takes position that, because her daughter is growing, the family can no longer do the things they once did.

We are no longer able to take her out to many of her favorite places and activities, and our ability to travel with her—by car or air—has also been limited. Until she was around four feet tall, she used to be able to ride on her father’s shoulders. This allowed her passage to many places where it was difficult to carry her or to take the chair: the beach, through the snow for that wild sled ride down the hill, and even up the stairs of our friends’ inaccessible homes. At her present size, this is no longer possible.

Walker adds that, with the development of knee flexion contractures,

She can no longer assist with transfers, stand or dance with Barney in front of the television, jump on the trampoline, zoom down the slide, or be supported in the swing at the local park. Getting her in and out of the pool is also no longer possible for me.

There is also a reference to spasticity:

Diaper changes and positional changes at night also cannot be managed by a lift, and they, too, have become increasingly difficult with her increased size and spasticity.

Before I address the first point, let me point out here that the mention of contractures and increased spasticity in this article provide considerable distraction from the issue at hand. There is no evidence, scientific or even anecdotal, that growth attenuation can prevent or even minimize the presence of contractures or mitigate spasticity in the disabled population. Yet this is directly implied in the piece.
It is important that these sorts of diversionary tactics don't get tossed into the mix when discussing g.a. G.A. does one thing and one thing only: it attenuates growth. All other perceived benefits are speculative. Long term studies from a significant population of growth attenuated children will need be carried out before any claims beyond the effect on physical size can be made.

Another thing that is unclear here, is Jessica's level of ability. Apparently, prior to the leg contractures, the child could "stand or dance in front of the television" and "jump on a trampoline." This implies the child had use of her legs...enough to dance and jump! One gets the impression that,
in a fit of 20/20 hindsight, Walker would have attenuated her child's growth, yet her child was not a candidate for growth attenuation in the first place. The powers that be, in their wisdom, felt that only those children who are non-ambulatory would be "eligible".

Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. (emphasis mine) ("Growth-Attenuation Therapy: Principles for Practice", Pediatrics magazine, June 2009)

What you are seeing here is the slippery slope in the making. It begins with non-ambulatory children, then progresses to children who might become non-ambulatory based on past experiences with other children or based on the "typical progression" of a child's condition?

In returning to the main point...that the child's size is affecting her ability to do things she once did...Walker is quick to make the following assessment:

These are problems that no amount of resources could solve. And in reality, not only are these “resources” not readily available, but many of them do not work for a child like Jessica. Those who call for “more resources” to solve these problems do not fully understand my daughter’s needs or my desire not only to keep Jessica comfortable and healthy, but also to save her from boredom and seclusion.

It is true that resources for the disabled are not readily available everywhere, but to dismiss the idea out of hand is ludicrous. In our city of under 400,000, there is more than one accessible pool, more than one Snoezelen room, accessible buses, plus paratransit,
a children's centre that caters specifically to the disabled population, accessible playgrounds, good school programs, a children's museum that is fully accessible and a host of other places to take a child with significant challenges. In the small town of 26,000 in which I lived previously, there were still quite a few services....some buses were accessible, but there was always para-transit, there were many accessible playgrounds, there was one Snoezelen room, one accessible pool, and another in a small town 20 minutes away, schools, by law, all had programs to suit disabled children. So, when Walker categorically states that "no amount of services" will "save her (daughter) from boredom and seclusion", she is, quite simply, wrong. Her child's size may force change to the activities that she once did, but it is not a wholesale prescription for "boredom and seclusion". Friends whose homes are inaccessible may be friends enough to make their homes accessible or friends enough to meet elsewhere with the family. There may be no more zooms down slides, but zooms down ramps. There may be dancing in the wheelchair. There may be no more supported rides on swings, but, the creation of a swing that holds the chair...something most service clubs are only too happy to build. Change comes to all families. To expect to keep everything the same via growth attenuation is unrealistic, to say the least. It doesn't give the child any chance for growth and alternative stimulation either. Really, does even a disabled child want to do the same thing for the rest of her life?

Walker also refers to "parents' aging bodies" being an issue with caring for Jessica. As she gets bigger, it gets more difficult to lift and move her. I do not doubt this. Proponents of g.a., then, like to see themselves as true visionaries, being proactive in planning for the future of their children at home, which is where they are expected to be cared for, forever, that time-span being particularly ill-defined. Unfortunately, such short-sighted naivete serves no one in the long run. It has obviously never occurred to Walker that her own life situation may change significantly in the blink of an eye, precluding her from taking care of her child at any size. She or her husband may themselves become disabled or incapacitated in some way. There may be divorce, financial ruin, death. Even more basically, an 80 year-old parent is no more likely to be able to lift a small child than a larger child. In truth then, proponents of g.a. have their heads in the sand about disabled children's futures. To freeze the child into a small size does not freeze the inexorable marching of time and the unknown that unfolds in it's wake. The future must be addressed: who will care for my child should I no longer be able to?

This begs the question of services once again: home care, respite, nursing, appropriate housing outside of the home. These are things all parents should avail themselves of or work hard to create in their communities. You do it for your child's future best interests. You do it for yourself, as a caregiver, to give you the space you need to carry on with the daily tasks of living with a child that requires full-on care. Growth attenuation does in no way guarantee a particular sort of future for any child.

Toward the conclusion of the article, Walker mentions "the disability community", and
how she felt "disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family."

I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.

I will be the first to agree with Walker that disability activists have done a poor job of reaching out to and trying to understand the issues that face families caring for severely, multiply challenged children. There are a number of reasons for this, this being beyond the scope of discussion here. Suffice it to say that, as a parent with a child who is severely disabled physically, cognitively and is medically fragile, I know that those advocates in the disability community have rarely been in tune with mine and my child's reality when it comes to our day to day lives.

However, a significant distinction must be made here. They don't get our day to day, but they do understand the long term societal implications of a "treatment" like that put forward by Ashley's parents and her doctors. Here, the shoe is on the other foot; most doctors and many parents new to the disability game are unaware of the long and terrible history of the treatment of the disabled in society.
Things that were once thought to be "good for the disabled" like automatic institutionalization and forced sterilization, are only now, in retrospect, understood to be the horrors that they were. Much was done to those with disabled bodies and minds in the name of doing what was best for them...much of it nothing more than abominations. Disability advocates, when it comes to growth attenuation, are able to see the forest for the trees in ways many parents, over-busy with caring for our children and in lock-step with the medical community, cannot. Their shouts of dismay about this "treatment" are dead on. In not listening to them now, will we have to wait another 50 years, and sacrifice too many of our severely disabled children, before we look back and see what an assault to their human rights that is growth attenuation?

Walker concludes her piece with the following:

I believe the opposition to the Ashley Treatment has taken our society a step backward in what has been a positive attempt in recent years by the medical community to allow parents to make some of the difficult decisions regarding their children’s care. Personalized medical care should allow individual families to make informed decisions within the medical and moral boundaries that are found in the hospitals they frequent. (emphasis mine)

Walker's error here is that she never steps outside of the medical community's perspective to view the large scale societal implications of growth attenuation. Understandably, given this bias, it looks fine. Once again, this is where she must turn to disability advocates to broaden her perspectives. If she wishes to build bridges, she needs to turn to those whom she felt abandoned her and be willing to teach and be taught. She must move away from a purely medical model of disability which aims to alter the disability rather than the society that encompasses it. Our children do not so much need to change as society needs to accommodate them...big or small, severely or not so severely challenged, young or old. Similarly, we parents who are choosing to do this important work as caregivers need all the support we can get and plans in place to assure ours and our children's happy and safe futures.

3 comments:

  1. The biggest issue for me lies with the "informed decision". People seem to use it as a shield. What is informed decision? It is obvious that later we will know more but we make our decisions (about the future) now, with what we have. What do we have? Not much. Not much research. I've had dealings with eleven pediatric neurologists, I found ONE who is interested enough in my son's unique situation that she really listens to what I say. Sadly she relies on other medical staff to help fill in the treatment paradigm who have no understanding of extremely disabled children.

    Without more advocacy from the community of parents, in the trenches, the medical community will not be able to progress.
    We are still stuck in this model where parents have little education and think neurologists have most of the answers.
    It is changing, but without a cohesive social paradigm shift, Growth attenuation could maintain its present form where the series of procedures, called a treatment, are in such a rough and even uneducated state that one can speak of actual damage done to the child.

    Discretion is entirely absent in a blind push to allow it to continue as is. I believe there may be certain aspects of GA which need to be investigated but there can be no speaking of a package deal, like Ashley X underwent, sold to unwitting parents who are made to believe that it is "accepted". I have yet to see established research that it is safe.

    ReplyDelete
  2. I happen to have a 9yr old, a runner and although with words still according to the "professionals" non-verbal, who is bigger than his 11yr old brother. A 9yr old that is going to be this generations "oops" in height and if he's as tall as my bro... about 6 1/2ft tall. I appreciate the difficulties in dealing with a child who now at 9, I cannot maneuver without damaging my back - and I have more than once put it out. So, playing devil's advocate I can appreciate the wish to control a medically fragile, severely handicapped child's size. But if there were no other "pros" to it, I don't see the point.

    Also, I have to admit I have issues with those requiring care deciding it's "ok" to have children when they can't look after themselves. I admit I find it selfish, self-centered and self-absorbed. Just b/c you are capable of getting pregnant doesn't make it "ok". Then again, the shear number of pregnant teenagers... my views encompass all those that don't think it thru and then think society should deal with the outcome of their actions and refuse to take responsibility for their own behaviour.

    I know... you posted about "available services" and how people can find them easily... it's an hour from me to you one way. Services I am lucky to currently receive are due to the fact he's low behavioural, happy go lucky, and I put him in programs that can accommodate him, not those I know will have difficulty doing so. This cuts programming considerably. I can guarantee you, the services you require for your daughter, are not easy to find within a 30min drive from here, and according to someone "in the know" a few weeks ago... have been cut locally once more. The extenuating issues that send you to the hospital, one large enough to help is 30min away - E, W or N. So, should she arrive at the local one it's either a chopper ride to the city or overland to the city by ambulance. Also, there is no busing, no paratransit in the 2 closest towns (13,000) to us. There is only cabs. Plus, I can guarantee you... our school board... which is yours too... does not have "good school programs" for disabled children. I am already planning on removing my youngest from the system b/c he won't be put in a severe ID classroom in highschool. The very idea of the regression that will happen.... The fights I've had with both so far and we're in Gr's 4 and 6 for programming... The school system... sucks at best.

    Again... I have no firm opinion either way.... I am not in that situation and have learned long ago about "stones and glass houses".

    ReplyDelete
  3. Eric, I tend to agree with you. They are calling it "safe" because each aspect of the protocol, each individual procedure,is already "acceptable" in an of itself. But, as a "package deal", yes, who knows? My greater concern is the false advertising that g.a. gets...helps reduce contractures, helps minimize scoliosis, helps reduce pain...etc. None of this is scientifically proven. I would like to hope that there are never enough attenuated children to get a good representative statistic on the supposed "extra benefits" of the protocol.

    FW2...services are NOT easily accessible everywhere...I acknowledged that. We moved here to get more. I object to the author's blanket statement that services can IN NO WAY mitigate "boredom and seclusion". That is total bullshit. Services are THE answer. Lots of them, lots of variety. Who pays? That's always the problem. Fact is, though, disability is with us forever and ever...and it can hit any one of us at any time. So...let's deal with that reality and a make a better world for the disabled, just in case we become one of them.

    ReplyDelete