Sunday, 5 September 2010

CE and Rett's syndrome

Shocking in a good way!

Six months ago, almost to the day, Conductive World remarked upon Learning Together, a new centre opened in California by conductor Eleonora Tamásné, blending her conductive work with provision of educational therapy:


Today she writes –

I am getting more and more involved with families who have girls with Rett syndrome. There is a clinic in Oakland and the director visited my session and was shocked, in a good way. She wants me to be part of the team in Oakland and run a project. CE can do a lot for these girls and I am looking forward to get deeply in it. I run my first summer camp in August and had two girls with this syndrome. It was amazing to see results in a very short time.

There have been scattered allusions from around the world about Conductive Education and Rett's syndrome but such work has not been formally reported (there may have been verbal accounts at meetings, but what does that leave?).

If the proposed collaboration in Oakland comes off then this may be the first protracted experience. Good luck with this proposed collaboration, Eleonora, and let us hope that you and the clinic director, as experience grows, will publicly report what you are doing and achieving.

Shock and awe, one hopes!

Reference

Sutton, A. (2010) Hungarian-American. New consultancy offers novel mix: Conductive Education blended with educational therapy, Conductive World, 3 March

4 comments:

  1. Tsad kadima is having a joint project with The association for the advancement, research and treatment of Rett Syndrom in Israel. They approached us a couple of years ago, asking to include girls with Rett Syndrom in a conductive environment. We agreed, and three girls ages 3-5 joined our center in Hasharon area, where Racheli balalt is the director.
    I asked to have a follow up study in order to measure the progress of the girls.
    Generally, they do seem to progress in certain functional areas, but under specific conditions and environmental demands. Racheli and myself will presenting the results of this study in the 7th CE Congress in HK.
    We can't conclude whether the conductive environment is the least restrictive environment for these girls, and a discussion should explore whether CE is the proper pedagogy for this population.
    Eleonora is most welcomed to contact me in this matter:
    ronyschenker@gmail.com

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  2. Thanks, Rony. For more specific information of this experience I am content to wait to December, but I find the information that you give above very interesting on four counts.

    1. Operationally, there is the collaborative factor. I see this as not so much as 'CE research' as much as 'Rett's research' that happens to involve CE, perhaps a more fruitful way forward for researching CE generally. This welcome feature you have in common with Eleonora's proposed project.

    2. The focus of your study is in part traditional-empirical, in that it is concerns 'functional' matters, from which it looks like you may have obtained the traditional findings – nothing decisive!

    3. But in introducing the least restrictive environment you bring in not so much an 'outcome' as open-ended aspects of the process itself. These are social in nature, and include the realisation of moral values. How you evaluate that will be fascinating to see, as it may hold in microcosm a clue to the fundamental contradiction within evaluations of CE to date.

    4. Manualisation. This fundamental question of research method was raised by the excellent Alberta research review, and never taken up by investigators (or reviewers) since. Doubtless more will be clear about TK's project in December on what was actually done to affect the children's education/upbringing? Maybe one day one might be able to ask the same question in Oakland, California. In such a happy situation we would then be able to ask what the two experiences, in Israel and Californian, will have had in common. As far as I know, this has never been possible in reported CE evaluations. They cannot necessarily be compared (though naive reviewers do seem tomiss this one). They are also unreplicable! Here in the tiny, embryo field of 'CE-Rett's research', I suspect, TK's 'conductive environment' might potentially be very different in significant respects (confounding variables) to those in whatever intervention Elaonora might establish in Silicon Valley. All well and good, say I, that is how it should be, but from such a viewpoint the question of 'whether CE is the proper pedagogy for this population' may not be appropriately phrased. Manualisation, conceptually simple if perhaps technically challenging to a field unused to such specificity, may help rephrase the question, say to 'What kind of conductive pedagogy and/or upbringing is most helpful in achieving given functional and social/moral outcomes?' or, moving on from there into R&D, 'How does one best adapt conductive pedagogy and/or upbringing so as to achieve given functional and social/moral outcomes?' Never mind the methodics of research design and their implementation, here for me is the fundamental issue that CE ought to have faced long ago on what constitutes the proper methodology appropriate for an approach that is essentially interventionist in nature and, implicitly at least, transformationalist in goal.

    Such important issues, so relevant to so much CE-research. Thank you for helping raise them again in my mind.

    Andrew.

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  3. Part one

    I am of the opinion that anyone and everyone can be brought up conductively if you have the opportunity, the resources and of course the "TIME" to provide what is needed.

    I was so excited to see what conductor Eleanor Tamásné had written...all that is needed is to take a look at the lives of the girls and see if they are happy and active with healthy souls!

    I recently heard that at the end of the last World Congress, in Sweden, that questions were addressed to senior conductors and members of the International Petö Association, about the suitability of a conductive lifestyle for other disabilities apart from cerebral palsy, and the adult disorders treated at the PAI (and presumably spina bifida and muscular dystrophy). I was told that although the reply was not one hundred percent negative it was also not at all in favour of conductors spreading their wings, as I have done to include groups for autists and for hyperactive children, as has happened with the Rett’s group, and has also happened in centres with apraxia groups. I am sure there are many more examples.

    I was surprised to hear of the hesitancy in the replies to the questions.

    I was taught at the Petö Institute, where I learnt about pedagogy that I could apply to different situations and find ways to solve the problems that anyone may come across in their daily lives. In the different groups at the PAI this pedagogy was adapted for use with children with cerebral palsy, spina bifida and muscular dystrophy, and many more different syndromes. I experienced this first hand in the International Group where I learnt from conductors who adapted programmes to suit a huge range of disabilities, disorders and syndromes.

    I have always been very surprised when I have heard people within the conductive world indicate surprise when conductors open groups for, or work in families with, children with a different diagnosis to the” norm”, i.e. cerebral palsy or spina bifida. I have even heard and read conductors saying “although CE is only for children with CP it can be adapted for use in…..”

    Why does this happen? Where does this come from? At the PAI conductive pedagogy is adapted for use in all sorts of different groups with all sorts of different diagnosis, why should it be assumed that it should stop here? Even the PAI has not got the resources to provide groups for everyone. I was taught how to adapt and use conductive pedagogy with anyone, even myself.

    They taught us as conductors how to use a method and adapt it to different situations, with people with different disabilities and illnesses, with different age groups etc., so when necessary we could adapt it for everyone. Including ourselves if necessary!

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  4. Part two

    Working out there in the big wide world every now and then a group comes together that has never been written about before. I am sure there are many conductors however who have lots to tell about the successes of conductive lifestyle for all sorts of different groups of people. That is what our work that is about. It is what we were trained to do. Conductors if they have the resources can teach any family how to live conductively.

    Never was I, in my four year training, told that conductive upbringing was for children with cerebral palsy or for adults with a specific diagnosis. I was taught how to use conductive pedagogy to create a conductive lifestyle for a group and at the same time for individuals.

    I do not understand how some people who are involved in conduction, actually question if conduction can be used for specific groups or individuals. I have come across many who do this, although not generally conductors. The question should not be “Can we?” but “How can we?” Of course we can, we just need to work out how and ask questions like “What resources do we need to offer the services required?”

    At the PAI and in my own groups and many others the same pedagogy is applied in the stroke group, the paraplegic’s group, the muscular dystrophy group, the spina bifida group and the Parkinson group, just as it will be in the Rett’s group, in the apraxia group, the group for hyperactive children and the autist’s group. The problems all these people face are sometime very different so the solutions will be different. This is what I learnt in four years training; how to recognize the problems then consider how we can provide the resources to help the clients find the solutions conductively. I was never taught that I can only apply conductive pedagogy to specific motor disorders.

    Actually when forming a new group and observing if it is successful there are not many questions that need to be asked at first. But I think the most important one is whether we have the resources to give it a go. All the adapting that is needed will take place as the programmes are planned, as the group gels together and work gets underway.

    I really look forward to hearing about the progress of the group of children in California with Rett’s syndrome.

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