Monday, 7 December 2009

Back to bifida

Case for a SIG

The question of spina bifida and cerebral palsy has again raised its head. If ever there were a case for a special interest group in Conductive Education, what is usually called a SIG, this is it.

On the Baby Centre Community there is a vigorous discussion forum, a section of which is dedicated to children with spina bifida.

It was kicked off a by a mother's quoting in full a letter from her doctor about Conductive Education. At one level her doctor had got it wrong. At the same time his advice was right and proper. He did seem to have to taken some care to find out what is 'known' about CE and his attitude seemed positive and humane. The problem is that what information is available for people in his position gives very little to go on. He found himself, from what he had read, unclear of how CE cou be a specific benefit for children with spina bifida.

Of course he was unclear on this. Who was telling him anything that sheds light on his question? Yes indeed there exists a medical book that might help him think otherwise. Then again, it might not. But at least some sort of informed judgement might have been possible. I wonder how many copies of that book there are in the whole of the United States. I wonder whether it has been cited anywhere in the colossal US medical literature. I hate this sort of situation (not just in situations involving spina bifida and not just in the USA) because of the failure of Conductive Education as a collective, corporate body to do anything systematically to change thhe situations that it find itself in, not least by reaching out to and informing people of good will.

I hate the situation in which that doctor was placed, because he was presenting a fair and well-stated synopsis of the medical literature, that CE is a 'therapy' and no particularly better as such than any of the others. In telling his patient this the doctor was just doing his job. And on the whole, what he wote, in the circumstances of the information open to him, was sensible and caring for the long-term welfare of both mother and child.

In Limbo

Whence can parents draw comfort on questions of Conductive Education and spina bifida. Not fro  the professional establishment and not, I guess from ready access to conductors. To paraphrase Goethe in Fauste this:

There is a way, it is the mothers

In response to this initial posting two parents whose children attend the Conductive Leaerning Centre in Gramd Rapids, children with spina bifida in a facility serving primarily those with cerebral palsies, wrote in to share their great satisfaction at what Conductive Education was achieving.

And then aother mother wrote in, fom yet another part of the US: to say that she wished that there wr a Children's Learning Centre (the name of the CE centre in Grand Rapids) near to wher she lives.

What principles are at work here? Caring, sharing, warmth and fellow feeling. The familiar reports of what a difference CE makes, and the contradictorily awful situation that this holds out for parents who can reach for just a small morsel, one attaineable only with inordinate cost and disruption.

But oh dear, all that 'therapy' that gets mentioned along the way! This is not just preferance for a choice of words. It seriously endangers the ultimate recognition of provision on the basis of an educational model (a family edicational model, at that).

Are not these parents and that doctor stumbling forward through the same darkness?

And how to cast light into that darkness? How best to tell one mother who wrote in that there are three CE centres near where she lives, plus university involvement, and possibly other conductors nearby, plus two umbrella organisations for CE in America, and the obviously much-needed Conductive Education Communications Center. And the Internet.. Isitt my business to cast such light? Whose business is it?

SIG, somebody?

At the opening of this posting I suggested that spina bifida might benefit from the formation of a special interest group. All it takes to do such a thng is a little initiative, a little leadership, a bit of work and a lot of care. It could be centred in the US or, in this Internet age, anywhere on the planet. The initiator/co-ordinator could be a conductor, a parent, anyone.

It will certainly not be me. I should be happy, though, to offer a few pointers (no more) if anyone decides to have a go, And if no one does, why should anything change for Conducive Education and spina bifida, in the United States or anywhere?

Just somebody do something!

Rather more on spina bifida

Medvetczy, E. (2006) Conductive Education as an educational method of neurorehabilitation, Budapest, MPANNI

No comments:

Post a Comment