Friday, 26 September 2008

From the very start of life: pessimism or optimism?

"The very start of life" by Susie Mallett, 1979


I was reading Gill Maguire's latest blog and linked from there to a newspaper article from Wales that spoke about the death of Naomi.

In the article were comments on the subject by other parents of children with cerebral palsy, and in the section “Call for register of children with disorder” there were quotes from a Mr Richard Parnell. Mr Parnell is research and evidence manager for Scope, which is all that's left of the former Spastics Society.

Speaking about cerebral palsy, Mr Parnell said: "It is around six to eight months when children are rolling over when you may have cause for concern. It is maybe at that time that you notice. But it is something you don’t find out typically until the child is at 18 months.”

I don't understand how things like this get published or even said!!!

I went as a third-year student alone to a hospital in Budapest with a conductor from the Mother and Child Department at the Petö Institute.


I saw the conductor who took me there again last Easter when I was at the Petö Institute and I told her how I had never forgotten what I had learned on that visit. This conductor was Homoródi Zsuzsa, head of Gyerek Ambulancia, the children's outpatient department.

We visited the premature baby unit. The conductor had a regular clinic there, where she talked to mothers who brought their babies back each week and gave them advice, checked whether the development of the babies was age appropriate and made any necessary referrals to the Petö Institute.


Then we went to the ward where the babies were who had yet to go home. We handled one very tiny baby, eight-weeks old, who had not yet reached her full-term birth date. The conductor showed me and the mother how to position this baby symmetrically and to do so every time the mother made contact with the baby during the day... at least 20 times. This tiny baby had asymmetrical reflexes and the conductor told the mother that if she positioned the child in the correct (foetal) position and turned the head to middle to gain eye contact, then she could prevent some very serious problems and symptoms developing. The baby was so small that I could positions all the limbs and head correctly just by using the tips of all my fingers! It took the skill of this conductor to show me and the mother how to do this.

Why am I telling you this?

Because it infuriates me whenever I read something like the above statement from Mr Parnell, or hear from parents that they have not been given the diagnosis cerebral palsy until their child is 18 months old. If a conductor can see that a new-born premature baby has problems then why can’t a doctor?

My guess is that many hospitals don't tell the parents because they don't know what to say directly after.

They don't know what to advise parents to do.

They do not know how to give parents hope.


I saw one thing to do in that premature baby clinic in Budapest and it was so easy and could prevent so much. The conductor told me that this could mean the difference between a very severe athetoid child and very mild symptoms.

I know that one of my thoughts at the time was that even showing the mother to turn the head in the middle to gain eye contact would make the life of that baby and its view on the world very different.

Why oh why do the Mr Parnells of this world not think like this? What is Scope for?


Notes

Gill Maguire

3 comments:

Andrew Sutton said...

That was a very touching and interesting story.

It was technically interesting at several levels, and generates some obvious questions.

First, I have never seen such early, early conductive intervention described anywhere. Why noy?

Secondly, the question of early access arises as a basic issue> Where else could one maintain routine access to such tiny babies ever to develop a pedagogic practice with them. And why ever not?. (By coincidence, last week Mhari Watson, Senior Conductor from March of Dimes in Toronto) told me something about a fortnight that she spent at a local hospital in the small town of Baja in southern Hungary. There, she told me with some envy, ‘The conductor starts working with them [stroke survivors] straight out of the recovery room’ Why ever can’t that happen elsewhere either?).

Thirdly, what does what the conductor did with that tiny baby have in common with conductive pedagogy at later age groups? As described the fundamental principle seems the vital task of establishing psycho-social mechanisms, generating inter-personal function, extra-personal connections… Why ever don’t others do this? Not because the actual technique is something complex or arcane but because of that basic philosophical difference about human modifiability.

Fourthly, then, is this something new and unique? Most certainly not. Most obviously think of the work of Ferenz Katona only a few miles from where you trained, on Szabadsaghegy. A distant memory suggests to me that conductors did work with him at times but that suspicions (paranoias) at Villayi ut kept the two systems apart. Very, very sad. I do know that his work has been quite extensively published in English… and very largely ignored. You can blame the fear of ‘researchers’ in part for this but I am sure that the reasons runs broader. And that’s worse by far than just very, very sad. That criminal.

Andrew Sutton said...

Apologies, Ferenc Katona should be spelt with a 'c', not an 's' as I did in my Comment earlier this evening.

When I first met him, in 1984, I was struck by his complex system of intervention, carried out largely at home by the child's parents over the first year of life. Since I posted my Comment earlier this evening I thought that ought to make a quick check on the Internet to see how well this is now known, discussed and exercised in the English-speaking world.

Guess...

Susie Mallett said...

I guessed right!
I googled Ferenc Katona too and found virtually nothing in English and just slightly more in Hungarian.

I didn't know about the stroke clinic in Baja, but I would love to make a visit in the not too distant future.

You ask why early intervention can not happen elsewhere. I am not sure, but it isn't for the want of trying.

I tried to establish early CE for stroke clients here in Nürnberg, with a group of conductors at the biggest stroke unit in the city.
Most of my clients search out CE after their treatment programme from such clinics has started to fizzle out, which happens usually about 2 years after the initial stroke.

Mostly the clients sing the praises of the immediate after care which the stroke units offer, but then they are left in the lurch and that is when we, conductors can step in.

The answers we got from the doctors, physiotherapists and occupational therapists at the hospital were much the same, they and their patients were happy with the treatment currently on offer, therefore no need to change anything. So, no thanks, no Conductive Education.

It quite possibly comes back yet again to costs.
As I stated most clinics start releasing their patients from intensive therapies after 2 years and if Conductive Education was introduced it would mean keeping these clients on the books, and paying for them, for a much longer period of time, actually indefinitely. In this day and age, especially as Conductive Education isn’t on the health insurances' lists of recognised therapies this would prove to be much too costly for them.
this I also find is sad and criminal.