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Monday 21 June 2010

Muscular dystrophy and a conductive upbringing.

"The rough with the smooth" by Susie Mallett 20th June 2010

Calling conductors who have experience in this field!

I have some experience having had children in our groups now and then over the years with muscular dystrophy.

While I was doing my training in Hungary, at the Petö Institute, I remember that I was told by a conductor that conductive groups no longer took children with muscular dystrophy as they believed it upset the children with cerebral palsy when they witnessed when the dystrophy children ceased to progress and slowly lost the strength they had acquired in the early years in conductive groups.

I do not know if this really was the policy or not, but while I was there in the late eighties and early nineties I did not meet any children with muscular dystrophy.

As a student conductor I visited many centres in Budapest and in other cities in Hungary that were offering conductive education, all with conductors, some with and some without connections to the Petö Institute. Some centres had supervision by conductors from the Petö Institute several times a year just as many of the centres in Germany still have. Some centres paid for students to study at the Petö Institute and once they were conductors they went several times a year for refresher courses and to work in groups that were relevant to the work in the centre where they worked.

I remember that at one of these centres I observed the work in a group which was made up of both young children with cerebral palsy and muscular dystrophy. I was told that here too that they had decided to change their policy and no longer take children with muscular dystrophy in the groups for the same reasons as I was told at the Petö Institute. The children with muscular dystrophy at this centre remained in the Kindergarten group but when they reached school age it was planned for them to attend another centre.

There were other institutes apart from the Petö Institute in Budapest where these children could have attended classes, it was less easy to find placements for them in the country towns.

At the moment we have children in the integrated Kindergarten and in the Tagesstätte (after school) groups who have muscular dystrophy. One is five years old and another is now fifteen. The younger child is building up his strength and learning how to carry out activities with the strength and skills that he has. this child takes part in activities that he had not attempted before and is delighted to be taking giving it a go!

He has his own scooter and go cart to use when he is outside with the other children and when he is with us in the conductive sessions he is learning the movements he needs to use these and other toys. He is developing his own techniques for climbing and walking and even running. He is building up more control in his body at the same timeas learning all these new skills.

The fifteen years-old child has attended the after-school group since she was seven years old. She is unfortunately not as active as she was as a young child. She still learns during the conductive sessions how she can position her body and use the skills she has to make the most of the strength and abilities she has and how to use these in all her daily activities.

Yes it is sad for her peers to see that this child is less strong than before but this group has been together for so long they are like family for each other, therefore I am sure that they would be sadder to see their friend move to different group than they are seeing her condition worsen.

In my training I did not come across children with muscular dystrophy. All my knowledge in this field I have acquired from asking more experienced conductors, from the observations I was able to make in other centres I have visited, from my own personal experience working with children and of course from reading.

I have a lot of experience with young people with multiple sclerosis and I can call on a lot of what I have learnt in this field when I am working with children with muscular dystrophy.

In my experience often children with muscular dystrophy have been sheltered in their upbringing, protected perhaps a little bit too much and have not experienced as many of the normal things of childhood as they could have done. Families often believe some activities are too strenuous for the children, or that they should not be required to take part in the normal family activities like washing up, baking, setting the table, helping wash the car etc so they can save their energy. When these children are so inactive they often get weaker and do not learn the social and practical skills that they need for their everyday life.

Just as with clients with multiple sclerosis it is important with clients with muscular distrophy to find the happy medium. To encourage and motivate the clients to lead an active life but also to help them to learn their limits, so they recognise when to rest and learn how to relax.

With children with muscular dystrophy it is important to give them activities for a short time and with different movements and energy levels required. We must do this too with children with cerebral palsy, planning activities according to their abilities and stamina levels.

Especially with young children it is important to change the activity often and to make the day interesting and motivating, although it often happens that children will surprise us all by becoming so excited and motivated that they will do something for a relatively long period of time.

When working with children with dystrophy it is important to observe where the limits of their strength are, to try to extend these limits but at the same time preserve enough strength so the child can actively take part in all the other planned parts of a programme and their day. As a conductor we must watch and change activities both individually and for the whole group when necessary.

With adults with multiple sclerosis it is very important that they gradually become aware of their limits and their abilities themselves, and that they seek to extend these but also to learn with our help how to do just enough so that the next day is also as active as the one before and that they do not need to spend it in bed, totally exhausted.

My adult clients gradually learn to tell me when they wish to leave out a couple of tasks because something aches or they are tired, children tend to carry on until they are worn out. With the adults I can respond to their wishes by spontaneously building a few more breathing or relaxation tasks into the routine so they can join in again if and when they wish. When working with children, as a conductor I have to plan the day to accommodate the child or children in the group with muscular dystrophy. We still need a programme that is continuously changing from sitting to standing, from jumping to singing, from lying to walking, from painting to bike riding, water play to lunch break. There must be active times of rest and active times of play, lots of observation, lots of laughter and hopefully lots of progress.

Together with our group and with our Littlie with muscular dystrophy we are doing very well, he is in our conductive group with five nationalities. His mum is doing well too, she comes to visit the group often to learn with us.

As well as learning to speak German our Littlie can now walk to and from the dishwasher carrying the plates and glasses from the table until the table is cleared! He can walk up the stairs without pulling himself up on the banisters with his arms, he even walks along a bank on his own and on top of a row of plinths. He can sit on the floor with his legs in front or with them crossed unsupported by his hands so he can play games and do puzzles and he can throw a ball from above his head with two hands and into the basket-ball net. He can cut his own food and hold a big fork ( they are heavy). He can roll a snake from clay and stir the mixture for a cake and he can reach the tap to rinse his paint brush by standing on tip toes. He also can ride his go-cart without always needing a push from a friend .

That is quite a long list of skills all of which go towards making his day very independent and also full of fun. As he learns to use his energy in the right places and in the right amounts for the job he is doing and as he adapts his movements so less energy is actually needed, at the end of the day he is no more exhausted than the rest of his friends in Kindergarten.

In comparison to my wide experiences working in stroke groups and MS groups, and with children and adults with cerebral palsy and with spina bifida, I have must less experience working with children with muscular dystrophy, although this experience increases too as the years go by.

If any of my readers have something to tell us of their own experiences with muscular dystrophy and a conductive upbringing please do write it here. Either in a comment or in an email for me to publish, or even write it on your own blog.


Conductive World said...

Sorry, but I just have to remark that I suspect that you are underwhelmed by the rush of resonses to this from your colleagues.

One gets used to this, one comes to expect it, one sees it as a role model for young people comimh into the 'profession'...

The first two of the above comments of mine are just m own account of my own subjective state at this (one that I suspect is widely shared by the non-conductors who are involved in CE, in larger numbers than conductors and in some cases with disproportionately greater personal responsibility for keeping the whole show on the road).

The thirs is rather different. Is this really the model for young conductors from their older and betters and, if it is, is it one that they expect/intend to follow when they are free to create rather better standards of behaviour for themselves?

Hatrshe? You should have seen the draft!


Susie Mallett said...

Yes Andrew, I am disappointed.

I really would like some information on this subject.

Not only that, I would really like to communicate with more conductors in general.

As Rony quite rightly said, not everyone has the time to have a blog of their own. My most recent posting had been in production for at least three weeks!

This comment however has only taken me two minutes to write.

I would appreciate comments or an email from anyone who has information to share on the subjects that I write about such as muscular dystrophy. Or even to begin discussions with me in the way that my recent posting on sleep was triggered off. There must be more people out there with something to say, to ask, or to share.

Andrew, a question for you in relation to muscular dystrophy:

When you were visiting the Petö Institute in the early days, before I was there studying, do you remember ever having seen or heard of groups for children muscular dystrophy?


Andrew said...

In 1984, in my first visit to the then State Institute (those were socialistic times, and any thought of the Pető Institute that would come to be, just a few years later, was quite unthinkable). Yes, on that first visit I did ask Mariá about children with muscular dystrophy.

She told me exactly what you were told, at the start of the nineties – almost word for word – that the other children found it very distressing when such children died, and so children with this condition, and other life-limiting conditions, were no longer admitted.

I recall regarding her explanation as implausible. Partly this was due to the way in which she told it, in that rather hasty, shifty manner that I later learned was how she spoke when she was being economical with the verité (I had plenty of opportunities to observe this, and to check and double-check what she was saying, on a variety of topics over the years that followed!). Partly, though, the a priori implausiblility of what she was saying stood out: it just did not 'fit' somehow with what I saw and what I heard of about how she ran her Institute.

Yes, I smelled a rat but, and here was another of her familiar traits, cold, steel shutters would come down instantly if one tried to question or argue with anything that she did not wish to discuss. I am sure that you will recall this one, as others do. I had known her for only a few days when I asked about muscular dystrophy but I already knew that it would be fruitless to pursue this.

I was left with just speculation. Was this the result of a diktat from the Education Ministry that she had fought and lost,and had no choice but to obey? Was it pressure from the staff that she had had to bow to, but would lose face by admitting to an outsider? Was it a result of her own decision in response to some single case that she now regretted? It would surely have been distressing, as it is in any school for children to dies in her close-knot community: but maybe the State Institute had not dealt well with this, which she was embarrassed to admit. Who knows?

Two thing,s, though, do emerge:

(a) the conductive pedagogy/upbringing had been used with children with muscular dystrophy, right up unto the ends of their lives;and

(b) it had not reportedly been discontinued for reasons inherent within Conductive Education (or, if you wish to continue speculate, maybe it had but it did not 'work' – and that is something else that she could not bear to admit!).

Not a lot of hard information, I am afraid. It is gratifying to read above of satisfactory practice outside Hungary, that tends to answer the parenthesised speculation in (b) above.

I do hope that someone writes in to fill in this small but vital gap in our understanding of the applicability of Conductive Education

(I would also offer some public reassurance that the trade of conductor can assume some of the substance rather than adopt superficial trappings of being 'professional' in the established sense.)


PS I am adding a bit more to this response on Conductive World

Gill said...

This is the first I have ever heard or seen about muscular dystrophy and If my memory serves me well i have never seen it mentioned in any CE literature (in English). Perhaps someone will prove me wrong - I hope so!

Anonymous said...

Susie, I cannot comment on CE and muscular dystrophy, but I did work as a carer for two teenage brothers with muscular dystrophy before I begun my conductive career. They were resticted to their beds (and sometimes wheelchair) for the duration of the day. They had severe breathing difficulties, communicated very little with family, friends and carers and had many health problems resulting from poor posture and positioning. For many years before I began working with them they had ceased to access any kind of education or therapy. I remember thinking "could things have been different?", "what if they had been taught to move?", "how many of the problems could have been prevented?".
Until now I had not heard or seen CE working with muscular dystrophy, but I am pleased that you are having such a successful experience with your little one. I think this post raises awareness of a need to widen CE services, offering an education for a range of children. I hear many a conductor say that CE is for children with cerebral palsy, and yes it is but it can also benefit many others.


Andrew said...

Gill, thanks for that. It does confirm my own recollection but a really proper check might just find some tiny mention in one of the few longer tomes.. Not my job though, nor yours!

Becky, thanks. Your questions and the answer that you advance provokes me into writing down a line of thinking that I have wished to express for some time and which you will find now on Conductive World:


jules_ce said...

Hi Susie

I have had experince with a couple of kids with muscular dystrophy-type conditions. One who was about 6. He definitely made progress and in strength, stamina and skill when he accessed CE, he did have drops in skill but developed coping strategies for these as they came along. He would have stayed in CE but he was offerred daily Physio at his mainstream school and so coming to see us for one session a week would not only overloaded his week - physically and there would be no time for other things! it was a shame and we left it with his family that if they want to return they would be welcomed. The other child is older and much farther detiriorated. He is unable to weight-bear as his feet are completely turned inwards. However we have helped him for 3 years to move, play and enjoy different positions and activities. Physically we see that he has seemed to maintain his level of ability well over the past 3 years, sadly the nature of his specific condition means that he is now loosing understanding of the world around him. However we still think he benefits from CE - in an adapted way and at the very least he moves around and plays out of his chair for a few hours here and there. I often wonder, as Becky said 'what if' he had come to CE earlier - would he be weight bearing for example?

I was never taught anything about Muscular dystrophy when training and simply because of how the groups were organised i didn't even ever see an MS session and have still not worked with individuals with MS. However, i work with colleagues who have.

Both children who i know both came to CE as parental enquiries to our centre and we always discussed with the familys at the start that we could not be sure of the suitability of CE. However, i would certainly consider the benefits to other children with dystrophy etc... as i feel i have had good experiences in applying CE to them.

on a technical note - i think there are some tie-throughs in techniques used with Spina Bifida for kids with muscular dystrophy - in terms of fixing weak limbs, using a swing to initiate a step etc... what do others think?

I'd happily join discussions about this. i know its hard to get conductors talking but at least some of us do eh?


Susie Mallett said...

Thank you all for waking up to the call for help after Andrew did a bit of advertising.

Jules and Becky especially thank you and yes it will be good to discuss this further.

I wrote a posting in my head as a reply to Becky as I cycled home this evening but that is where it will have to stay until the end of the week, or even until the weekend.I do not have enough time to wirte it down at the moment.

Andrew has already said a lot in his recent posting that was in my thoughts, but I will expand mine to include responses to Jules too.

Just one observation :

I think we all ask "what ifs" when we begin to work with new clients, but all we can do is to do the best that we can at the moment and try not to ask questions about an unknown past.

We have no way of knowing how things would have been different in the future if the past had been different. We only know for certain that it would have been different.

We also know that what we are doing now for our clients, any clients, will positively influence their futures because they come to us for guidance and help especially so this transformation can take place.

More later and thanks for sharing your experiences. Hopefully we can fill a shelf in Gill's virtual library with some muscular dystrophy info.

Andrew said...

That was nice to read Jules. It says to me that, as long as a conductor is willing to be adaptive, as I know many to be, then there is no reason for trepidation in stepping out of stereoyypical roles. I am sure that there are many others out there will a host of such stories to tell, and I do not mean simply with dystrophy.

One thing, Jules, and please don't take this as a criticism (it is, of course, but not I suspect of yourself but of a speech habit that you have picked up. You have written: 'However we still think he benefits from CE - in an adapted way...'

This represents precisely the mind-set that I was railing against in my posting on Conductive World earlier today. Surely what you were doing with this older boy was 'CE', suited to his apparent developmental priorities. OK, it was 'adapted' from what you had learned and experienced beforehand, presumably to a large part from 'CE for cerebral palsy', which was itself ultimately adapted from... what, we do not precisely know.'

In other words, all CE is adapted, and all strength to those who continue this process, including yourself. You jave it: flaunt it.

Crikey Susie, you have created and multiplied a literature. If a few more would only chip in you have a little publication there!