Tuesday, July 19, 2011

Conductive Education: Research and distrust and James Klausner's dream

The Peto Institute has done wonders for me growing up. I've seen countless other kids around me getting off the floor to walk the best they could: with sticks and braces, wiggling from side to side or bending knees. But they were mobile, we all were. Yet, when The Gainesville Sun journalist was writing an article  about me, when looking up any research on Conductive Education (which was the name of the method) all she could come up with was "inconclusive".

When James Klausner established our own Peto-inspired Academy in 2005, he had amazing plans that vanished years later and big dreams that never came true.  In an interview for the "Sun"  from that year he admits that while Conductive Education success with Cerebral Palsy is seen as "anecdotal" he wanted to establish a research facility that will evaluate or prove the method's usefulness using the academic community of our Gainesville neighbor, University of Florida.
It's six year later. We never got involved in any research program, Conductive Education is still facing a lot of resistance from the medical community, the programs are often small and community/family owned in America, not covered by insurance and providers often face financial problems forced to restructure as schools or nonprofits to get any kind of funding. James Klausner might have been a grieving father who lost his cerebral palsy afflicted child, but he was also a scientist.
As I observe new generations of kids getting off the floor I think to myself, why, if we see all this progress, all those children pushing themselves to be better and more able, can't we study it to  show proof. Why does it seem to escape the scientific method?
I come to a number of conclusions. Cerebral Palsy is an umbrella term. Kids that come to us are affected by it in different ways and to a different extent. Depending on how severe the condition is and what abilities it affects, "progress" can mean a lot of things and weighs on the quality of life differently. To kids that don't communicate for example any communication skill is essential. How does it measure up on any scale with assisted walking in kids that did not walk?
Just as they don't start on the same "level" of disability they come to us at different age. CE is understood as most effective when started as early as possible. How can you evaluate and make up for the age, weight, elasticity differences, years of no therapies and neglect?
Kids also come to us having tried other therapies, treatments and methods that may have benefited them and advanced them that CE later built on. How do you properly account for all that happened before?
Lastly, our groups are small and children get in and out of the program a lot. It's not constant enough to fit the scientific method requirement. Additionally, "progress" may happen at any time, not juswt within any pre-determined time period. Not only does the nature of cerebral palsy as affecting the brain  , an organ we don't entirely understand make it a highly individualized condition, but as individuals we all progress on our own schedule and in our own time.

2 comments:

  1. Thanks for at least raising awareness. I would never have heard of CE if not for you.

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  2. Very nice post. Speaking about start-ups and technologies. To my mind, VDR is one of the most growing industries on the world's market. All of the paperwork is left behind and now it is time to go digital, virtual data room is very convenient for any kind of business.

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