Wednesday, 18 June 2008

CONDUCTIVE EDUCATION AND DOWN'S SYNDROME

Do not rule it out

The question


On 10 June ‘HowardL’ appended a by-the-way enquiry to the Comments page of an earlier posting (A hard call to make, 16 May):

Not a comment but a question really. Do you have any evidence for or against the use of C.E. in children with Downs Syndrome? Thanks for any help.
No one else has responded so I had better do so myself. The question raised and its ramifications are too important to relegate to the tag-end of a Comments list on a different topic, so I deal with them up front here, not least in the hope that they will stimulate further Comments below, based upon practical experience.

Simple answer: No. One may sometimes see it written, however, that Conductive Education is specifically counter-indicated for Down’s syndrome. This is not in fact so.


Children with motor disorder and Down’s syndrome


Conductive pedagogy is often erroneously reported as having been developed primarily for children with motor disorders, even specifically for children with cerebral palsy. It cannot be restated too often that this also was not so. Given this widespread misapprehension, however, some may find it easier if I start with children who have motor disorders and Down’s children.


There is no a priori reason why some children might not begin life with the physiological basis for both developmental disorders. I have never seen any figures for this, and I suspect that none exist, but one may guestimate an order of magnitude for the incidence of such a double disability by multiplying a favoured figure for the incidence of cerebral palsy bya figure for the incidence of Down’s syndrome. No doubt further assumptions might lead to an ad hoc prevalence figure. If my reasoning is at fault here I will welcome correction but, whatever the arithmetic involved, the incidence and prevalence of congenital cerebral palsy x Down’s syndrome will be in practical terms be very rare.


There is however a special case of acquired double disability that might occur. Children with Down’s syndrome may have grave cardiac problems and these requiring surgery to save their lives. Surgery carries a risk and sometimes things do go wrong, leaving a Down’s child with a satisfactorily repaired heart, and brain damage with attendant spasticity. One such child has attended the National Institute of Conductive Education (NICE) since it opened in 1995. His heart operation had led to a stroke and he was hemiplegic, the accident happening early enough in life for his hemiplegia to be counted as a cerebral palsy.


Whether the cerebral palsy is congenital or acquired, children with such double disabilities pose the same challenges to conductors and to their parents as do any other children with developmental motor disorders compounded by significant intellectual disabilities. They may also, of course, have further problems associated with the either condition, with compounding effects upon their learning and development, their pedagogy and upbringing. With respect to the Down’s syndrome, the most common of these will likely be conductive hearing loss. A competent conductive service should be able to take all such problems in its stride.


Children with Down’s and no motor disorder


I have often been asked over the years ‘What about CE for children with just Down’s syndrome?’ Indeed what about CE for a host of other intellectual-disability syndromes. The answer has to be 'If you can find a conductor willing to develop this work, why not?’


Because of the historical development of conductive pedagogy within its particular institutional and social context in Hungary in the years before its internationalisation, conductors’ training and experience was almost exclusively directed towards motor disorders. The name of the institution where conductors were trained made this very clear: it was for motor disorders. Conductors who trained at the Pető Institute have always known that children with additional moderate and more severe learning difficulties have been eligible for conductive upbringing because groups for them have been an integral part of the service offered there.. These groups have their own curriculum, the children’s progress would be slower and ultimate outcomes reduced.


When conductors broke free from their parent institution and began working very different situations around the world, some met a wider range of clients than those with whom they trained. A first response was at times to declare such children ‘unsweetable’ (unsuitable). This notwithstanding, there has now been considerable extension of Conductive Education’s accepted client group into very severe and complex learning disabilities (though this experience has yet to be explicitly crystallised/described, anywhere – so please don’t ask!).


In this diversifying context the question about CE for children with one specific condition, Down's syndrome, is actually rather artificial. Down’s syndrome is one chromosome disorder, albeit one with a long documented history. There are other, less well known. Currently the parent-and-child service at NICE includes children with chromosome 16q deletion, unbalanced dislocation of chromosome 22, chromosome duplication and cri de chat syndrome (another chromosome disorder). In the past there has also been a child with trisomy mosaic symptom, all these amongst a range of other children, most though not all of whom have motor disorders of some kind. Conductive pedagogy and upbringing are brought to bear for the sake of all these children and their families, adapted to suit the particular developmental needs manifest in individual cases.


To enquire more about the parent-and child service at NICE, contact:

schooladministator@conductive-education.org 

There is no fee for attendance.


A dedicated group for children with Down’s syndrome


I have known of only one specifically service specifically structured for children with Down's syndrome. An alternative health centre in Islington in North London, PALACE for All, provides conductor sessions according to conductor-availability. A while back this certainly included a small group for children with Down’s syndrome. I do not know much about this but, if you would like to know more, you could contact Sue King, the Co-ordinator at PALACE for All:

info@palaceforall.org.uk 

The mother of one of the children who went there is photographer Maria de Fatima Campos who has created a handsome web-album of her daughters Victoria’s first three years of life:


http://www.shiftingperspectives.co.uk/dsa.html

You might care to enquire of her, too:



I am sure that there must be other experiences, publicly unsung. If you do know of anything, do please make it known.

Some theoretical considerations


Less commonly than hitherto, there are conductors who shy away from the unfamiliar – and are correspondingly less willing to take on the challenge of what at first sight might appear unknown. (This reaction is not unique to conductors of course. Institutions often respond in the same way to the notion of ‘CE for Down’s syndrome’).


At one level such conductors (and institutions) have a point. The day-to-day practices of conductive pedagogy have been developed very much in terms of the manifest problems facing children with motor disorders. As suggested above, children with both Down’s syndrome and motor disorder are very rare indeed but when they do appear, they present familiar conductive-pedagogic problems. Take away the motor disorder, however, given a child who ‘simply’ has Down’s syndrome, then what is there for the conductor actually to do?


In part, an obvious bridge from children with motor disorders to those with with Down’s syndrome is that all sorts of motor skills may be delayed for Down's children, presenting in younger children at least what look familiar pedagogic tasks. I used to think that there may have been a useful distinction to be made between ‘delayed’ and ‘disordered’ development, but now I am less sure. Whatever the underlying cause, it sets off a complex transactional chain of psycho-social (and bodily) learning and mislearning for child and family (Vygotskii’s ‘dislocation of development’). Whatever the cause, be it sensory, motoric, or an intellectual impairment like in Down’s syndrome, the pedagogic tasks are the same: understand the likely mechanisms involved, and seek to establish more effective reciprocity, create mutual bonds and the joy and satisfaction of learning. The disciplines of conductive pedagogy as learned by conductors probably provides as useful a framework as any for developing an appropriate pedagogy for bringing about ‘orthofunctional spontaneity’ in the presence of Down’s syndrome.


Or one might wish to blend conductive pedagogy with an existing approach. Reuven Feuerstein’s mediated learning, developed originally for children whose development had been interrupted or deformed by their experience of the Holocaust was itself subsequently adapted for working with children with Down’s syndrome (a model for adapting an existing pedagogic approach to a different developmental disorder). Feuerstein himself is very keen to encourage a coming together of mediated learning and conductive pedagogy (see for example, posting of 21 November 2007, Conductive Education and Feuerstein).


For a conductor or institution willing and able to innovate, there seems no end of innovation and humane advantage to developing conductive services for children with Down’s syndrome, with theoretical grounds to justify this and to point to means of practical action. One has to wonder, however, whether the developed world has much space to permit such innovation, which may have to be left to newer nations at earlier stages of service-development.


There are three further theoretical dimensions to the question raised by HowardL. First: the reasoning presented above, to open out conductive pedagogy to children without motor disorders applies of course to all children, not just those with Down’s syndrome and not just those with disabilities. Secondly, there is nothing especially magical about conductive pedagogy: there are many ‘transformative educations’ (and potentially many, many more) that share the same overall goals (transform human development). Thirdly: let us not restrict the discussion to pedagogy alone, but always remember always the potentially positive (and negative) contributions to human development of the various dimensions of upbringing (conductive or otherwise): the ‘horizontal’ dimension of the family as whole; the ‘longitudinal’ dimension of the life-span; and the ‘societal’ dimension of the contribution of the big wide world.


I do hope that these very general observations are of some help in response to your question – and that others can offer you some more specific guidance.


Footnote: adults


NB I have dealt solely with children here. There seems no fundamental reason, however, to restrict what I have written here to any single age-group. I have to admit that for some time now my only personal observations of people with Down’s syndrome and adults with other ‘learning disabilities’, has been restricted to little groups whom I see walking with care staff in Cannon Hill Park and elsewhere.These fill me with the overwhelming desire to see the provision of a little conductive pedagogy for adults with intellectual disabilities, Down's syndrome or otherwise – any pedagogy!


Note

de Fatima Campos, M. (2001) Victoria and me

http://www.campos-davis.com/infoweek/dsa.html

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