Wednesday, September 25, 2013

No respite? Who is taking care of Ashley?

My focus of late with regard to the Ashley "treatment" has been to go over the primary material (whatever Ashley's parents have written) very carefully. It has been a revelation. Inconsistencies abound. Questionable statements are everywhere to be found. It is deeply distressing that families are being introduced to this "treatment" via the sloppy science and emotional blackmail put forth by the parents. I will be posting a detailed analysis about various topics introduced in the material, hoping to point out the deep flaws in thinking and information that exist in what the parents have put forth.

Below are a few quotes relating specifically to Ashley's care. I will look at them more carefully afterward.

Also, those that think a lift will do, simply have no clue. Any caregiver with direct experience can understand these points (http://www.theguardian.com/society/2012/mar/15/ashley-treatment-email-exchange)

Ashley could not be moved as frequently or be as included in family life, and we would
not experience the joy of being an intact family as often  (http://pillowangel.org/Ashley%20Treatment%20v7.pdf)

The main benefit of the height and weight reduction is that Ashley can be moved
considerably more often, which is extremely beneficial to her health and well being.
Currently, one person can carry Ashley, versus requiring two people or a hoisting harness
and ropes, should she have grown larger. (as above)

We are currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an
additional 50 pounds would make all the difference in our capacity to move her.
Furthermore, other than her Mom and Dad the only additional caregivers entrusted to
Ashley’s care are her two Grandmothers, who find Ashley’s weight even more difficult to
manage. We tried hard and found it impossible to find qualified, trustworthy, and
affordable care providers. (as above)

The quotes above relate directly to Ashley's physical care, specifically to the issue of lifting. Based on these quotes, one can surmise that a) the family does not have a patient lift in the house and b) that there are no caregivers outside of the immediate family and the grandmothers.

Here is what I wonder about:

Based on this information, prior to attenuating Ashley's growth, the family was "near the limits" of being able to lift her at 65 lbs. In the Guardian interview, the father noted that Ashley was, post g.a., 75lbs
* Are her caregivers, namely, Mom, Dad and grandmothers, still able to lift her?
* How long before the grandmothers, whom we can assume are in their 60's at the very least and who were already said to be having trouble lifting Ashley at 65lbs, will be unable to lift her because of their age? (Here too, I wonder where the grand fathers are, but it is possible that they are not alive).

* Has the family yet had to purchase the dreaded patient lift in order to transfer Ashley? 
* How do they bathe Ashley? My own disabled daughter weighs about the same as Ashley does and there is no way that I would ever put her in tub without the aid of a lift or a second person. It is possible, however, that they bed bath her, as I have done over the years with my daughter.

Now, here are a few other things that I find suspicious.

Parents categorically state that only they and the grand mothers are "entrusted" to care for Ashley and that no acceptable outside help could be found. 
*So, assuming the father works, then Ashley's mom is a stay-at-home mom and her ONLY respite is her mom and her mother-in-law?
* How often are these women called upon to assist in Ashley's care? 
* What will happen when they can no longer care for Ashley due to their age? That leaves Ashley's mom to care for her almost 24/7. Will they suddenly find acceptable help then?
* Do these parents take holidays on their own? If so, are the grand mothers caring for Ashley while they are away? 
* One quote implies that sometimes the family is not "intact", meaning they carry on with activities without Ashley. Are the grandmothers watching Ashley while the rest of the family is out?
* If the family takes holidays as a group, "intact", do the grand mothers come along also or does Ashley's mom do all the care giving?

What I am saying here is that I find it hard to believe that there are NO other care givers for Ashley besides the mother and the grand mothers, this many years into her life. It would presume that the grand mothers make themselves available on a nearly daily basis, or barring that, the mother is on her own a great deal with Ashley.  I suspect there is a certain fudging of the facts here. It is an entirely unrealistic scenario. Or that might explain why Ashley was always so bored...

On a final note: one quote refers to the "main benefit of the height and weight reduction" caused by g.a. Let's be clear here that g.a. does NOT guarantee weight reduction. It is possible, of course, for a person to be very small and quite heavy, even obese. Ashley's weight is determined solely by her caloric intake. How is this being assessed? Is Ashley getting enough nutrition to satisfy her hunger, or are the artificial weight restrictions placed upon her by her parents "forcing" them to reduce her caloric intake for the sake of weight alone?

To be effective, decisions to limit linear growth should be matched by commitment to limit calories sufficiently to maintain a relatively lean body habitus. (Growth-Attenuation Therapy: Principles for Practice, PEDIATRICS Vol. 123 No. 6 pp. 1556 -1561)


In conclusion, the quote above is particularly distressing, but when read carefully, all of what is being intimated about Ashley's care is suspect.

2 comments:

  1. ..Do you see any similarity with whats happening to gender non conforming children now - who are also being endocrinologically manipulated and surgically relieved of their secondary sex characteristics in order to better fit in to social paradigms and make it easier for their care givers to accept them?

    ReplyDelete
    Replies
    1. You are bringing up a good point. Both involve irrevesible procedures performed on individuals unable to choose for themselves. Both involve inability to accept the physiological reality of the individuals involved by their caregivers, whomever they may be. Certainly, parents believe they are doing what's best for their child...which is definitely what is going on with many parents opting for g.a. The choices are socially driven rather than based on any genuine need for the procedures. So, yes...absolutely...many similarities here. Thanks for commenting.

      Delete