Susie Mallett

small66711@aol.com

Thursday, 16 December 2010

Tough living and tough loving




"Buddha and blue skies" 9th December 2010 Hong Kong


From Familie Becker, Germany

As told to Susie Mallett and published in "Intelligent Love" by By Jo Graham, Chas McGuigan and Gill Maguire
http://www.blurb.com/bookstore/detail/1755137

We are a family with four children, born in 1988, 1990 and 1994. One of our twin sons, born in 1990, has athetoid cerebral palsy. We have always been willing to try different therapies and activities to encourage our son's development if we think that they might enable him to take as active a part in life as our other three children have always done. We run our business from our home and live as part of a large extended family, and we have always looked for activities for our son that fit in with our life-style and with the whole of family-life, as well as being suitable for him.

Finding “Petö”

In 1995 we first learnt about Conductive Education on German television, in a report on Dr.Antje-Katrin Kuhnemann’s health magazine Sprechstunde (surgery).

Fr. Dr. Kuhnemann, a surgeon and doctor of internal medicine, is very well known and respected on German TV. In this particular programme she reported in depth about one of the first German children to attend the Petö Institute during the early nineties, and interviewed both the child and his family. It was this child’s father, Peter von Quadt, who had gone on to establish the national association, Verein Fortschritt, and by doing so introduce Conductive Education to many families in Germany. Fifteen years later he is still, expanding the services at a great pace in Bavaria, while other Fortschritt groups also thrive all over the country.

It was due to the high regard given to Fr. Dr. Kuhnemann and her magazine programme that we sat up and took notice, and then decided to find out more. This was not easy, even though at this time conductive education was becoming well known in the south of the country (we live in the north) and it was in Franconia in Bavaria that we found a clinic that was offering CE as part of its therapy package.

Fighting for funds

After long struggles with the health insurance company for funding, on three occasions, our son, then aged five, was able to attend this clinic, in southern Germany
for three weeks in 1997, and then again in 1998 and 99.

Here a part of each day was spent in a conductive group. For the rest of the day he took part in other activities, including manual therapy with Dr Pfaffenrot, physiotherapy, occupational therapy, music therapy, speech therapy, swimming and water games, and riding. All this was included in a package for children with disabilities that the clinic offered for several years – until its closure in 2002 when the health insurance companies refused to loose the fight and paid no longer. They were never happy about paying for those specific therapies that would not otherwise have been paid for individually. This included “Petö”, riding and manual therapy with Dr Pfaffenrot, all of which we wanted for our son.

Our fight with the health insurance company was more particularly over the fact that it would pay for such a course in the clinic only every three years, and we wanted to take part in conductive groups more regularly. We saw this as the only way in which we and our son could learn and progress and then be able to continue at home. We cannot say that there was anything in particular in our arguments that won them over, we just fought until they said Yes. The clinic was very popular with parents who wanted to have access to Conductive Education. Outside such a clinic we would have had to pay for it privately.

Getting started

Before our son was able to attend the Conductive Education group at this clinic, the conductors working there had insisted that he should go to Hungary for “an assessment”. The journey to Budapest for a long weekend to attend this assessment was very inconvenient for the whole family. It is difficult travelling with four children under the age of seven at the best of times but, when one of them is disabled, it is even harder. We felt in those early years that not enough consideration was being given to these difficulties, and that this was made ever harder by the inflexibility of the Petö Institute and the conductors sent from there to work in Germany.

This compulsory assessment could just as easily have taken place at the clinic itself or at a local summer camp where there were conductors every year.

During the summer of 1995, before the first visit to take part in Conductive Education at the clinic had been finalised, we received a phone call from a family who had been involved in setting up a Petö Institute summer-camp at Fortschritt Waltrop, not too far from our home. Out of the blue we were asked whether we would like to take part – to start on the following Monday. Although this was a last-minute invitation our son was allowed to take the place offered to him as he had already been assessed in Hungary. This was the beginning of his conductive upbringing. He was five years old.

At about the same time as our first step was made towards what later became our conductive life style, we attended a meeting at the educational centre where our son attended Kindergarten and later school. Conductors had been invited to this meeting to speak to interested families, and to therapists, and teachers, to inform them about Conductive Education. Many such meetings were being organised in 1995 throughout Germany by the Fortschritt organisation.

For us, and against us

Attending this meeting was the director of the school and Kindergarten where it took place. The teachers who would later became our son’s teachers and the school's therapists were also present. The physiotherapist from a local town who has treated our son from birth up until today took a very active interest at this meeting too. Our son’s therapist remained very interested in what over the years has become known as Petö Therapie and has continued to be supportive of us and our dedication to bringing up our son using this form of upbringing. The head teacher and school’s therapists, though, argued against it from the start, although at that time they had as little knowledge of CE as we had.

Over the years we have experienced not just lack of support from these people, they have also demonstrated practically that they are against it. Over the years the classroom teachers have visited his Conductive Education sessions and integrated what they have learnt as much as possible into their lessons, but the director and therapists have stayed away. Even at that first meeting with the conductors, it had appeared to us that that they felt threatened by this “new” method. They continued to behave like this to this day.

Wanting to learn more

At that early stage, in 1995, what we heard on the television and at the first meeting was all the information that we were given, and we had no means of finding out more. There was no opportunity in those days for us to find anything in the Internet, and even less so in German.

It was therefore quite a shocking and fearful experience when we attended the first summer camp with our son, in August 1995. The first shock came when the door of the group was shut in the parents’ faces once the children were inside and our fear that we really had no idea was happening to them in that room. We had been given no information beforehand about the conductive group and we became none the wiser throughout the three-week course. We were allowed into the room for only one morning in the last week – just to watch with no instruction on what we were seeing, or how this might fit into our life. We had a private talk with a conductor on the last day, lasting for under one hour. Our son had made a lot of progress, so on the one hand we were very happy, but on the other we were not. We still did not really know what it was all about and still had no real notion of how to find out. The summer camp had cost us a lot of money, and we wanted to know more about what was happening there, about what we were buying.

We began to learn a little more when we started to attend the clinic that offered Conductive Education as part of a rehabilitation course for children with disabilities. There was generally more communication with the therapists and the parents in the clinic, and the conductors were expected to fit into this same, more open system. During our three visits there were always different conductors running the groups, and their openness and willingness to give the parents information differed greatly. We still did not spend more than one session in the group – watching, but not discussing, our child’s progress.

Towards conductive upbringing

Until the age of nine our son attended the above-mentioned clinic three times, and he also took part in three different summer camps organised through Verein Fortschritt with conductors from the Petö Institute. There was no follow-up and no continuity in this work. Each time, we met different conductors who went back to work in Hungary and could not offer us any further advice, either through home visits or in communication by letter or phone.

We have four children with five years between the oldest and the youngest, we also run our own family business from home. It was getting increasingly difficult for one of the parents and one or more of the children to travel away from home to attend therapy or education courses with our son. By the time that he was nine years old we had decided that it was time to stop all the travelling that was entailed by attending the Petö Institute's summer-camps and different therapies, as this was less than ideal for the rest of the family.

Conductive upbringing in our home had begun when our son was seven years old. During our first visit to this clinic, in 1996, we had met a conductor who began working with our son and family in our own home. We discussed this problem with her – she was by then working regularly with our family – and we decided to settled for a conductive upbringing at home that would entail three visits a year, for three weeks each, and any communication necessary in the in-between-times.

We had experienced so much success with conductive upbringing that we knew we should continue. This would be the easiest way for us and our family to help our son as best we could.

Conductive upbringing: a good choice

We had seen success with other methods over the years. We had worked intensively with our son when he was a baby and young child, using Vojta therapy that was taught to us in weekly sessions with our long-standing physiotherapist, and we continued the work at home. We believe that both Vojta and Conductive Education have worked for us because both were carried through intensively and consequently over a long period of time.

Conductive Education has given us concrete ways of using the improved movements made possible through doing the Vojta treatment. Our son needed strong discipline as a child and the structure of Conductive Education has suited him very well. He has much preferred the practical, everyday activities that he has learned to do in Conductive Education to the abstract movements of Vojta.

Over the years our son has often said that he prefers doing his Conductive Education with his family, where he can learn to use the things in his own home that he needs in his everyday life. From the very beginning, for example, he had to learn to walk the stairs at home, as we live on the second and third floors of an old farmhouse. The stairs spiral upwards, they are tiled and have no banister. He has walked both up and down them for the past five years totally independently. Having learnt this at home he is able to climb stairs, and step on and off the curb, step on to buses and trains, wherever he finds himself. He is very independent outside of his home, as he learnt early on to climb the stairs.

By working together with the conductor we have been able to identify the understandings and skills, and the attitudes, that our son has needed to develop at specific times in his life. We have been able to offer our son all the experiences that our other children have had by learning how to do them with him, despite his motor disorder, and we have been able to motivate him to take part in all that we do as a family. The conductor has worked intensively on certain skills and we have been able to observe how to incorporate this into our lives in different situations. Even though sometimes we feel that we are not being one hundred percent conductive we try not to help out more than we would with our other children.

It has been important for us to have someone observing and suggesting "from the outside" at regular intervals as we have not always recognised the developmental and the teaching needs of our son immediately.

Family matters

When he was still quite young, our son has also told us that he did not wish to be away from his brother and sisters for long periods in order to attend different courses. His siblings were by then all attending school, so none of them could go with him.

Conductive Education is probably the only one of the treatments, therapies and educational methods that we have tried that has been an education for the whole family. This includes grandmothers and grandfathers, aunties, uncles and cousins, as well as our immediate family members.

Our children have grown up with a relationship to disability that is completely different from that of their peers. They do not see their brother as someone with a disability. They expect him to behave as they do and to try all that they try. They expect him to play a full role in their family life. Through this they see all disabled people first as a person, just as they see their brother.

Our other children have often had to take a back-seat. They have perhaps missed out on activities like cycling as a family or going on long walking holidays together. We have always found it important as a family to do things that we could all do together, to take holidays that included activities for our son. This may have restricted some activities for three of our children but it also put high expectations on their brother with the movement disorder. If we were on a holiday by a lake he too was expected to help pump up the boat, jump or fall off the pier, paddle the boat and swim out to an island. If we were at a concert he was expected to behave accordingly and in a restaurant to eat with the manners expected of his siblings. They were all very strict with him even as young children, although they also helped him enormously.

The children are all young adults now. They are willing to take responsibility for their brother when they are out together. At village parties they will check now and then that he is OK, even correcting his behaviour if they think this necessary. All the children have been brought up in the same way, with the same expectations. When younger they would all join in different parts of the conductive programme on returning from school, enabling them not only to learn about their brother's special needs but also how and when to say No, how to encourage and motivate him, and if necessary how to take care.

Perhaps the time and attention that our disabled son has needed had the most negative influence in the life of the oldest of his siblings, his sister. She was the one who was always left behind at home, as she was already at school when his different treatments began. The start of a conductive upbringing at home therefore had a positive influence on this child’s life and she has always taken a great interest in it.

His sister still takes responsibility more than the others do to take her brother out without us, his parents. It is because of the knowledge that she has that she is able to do this and we think that through conductive upbringing in our home that this acquisition of knowledge has been possible.

Our whole family, and that includes both sets of grandparents, along with aunties and cousins, has acquired a lot of knowledge about conductive education and upbringing over the years. This has been possible for us only because of the continuity of working with the same conductor over a long period of time, now almost fourteen years.

We live in a small community with Grandparents in the same house, and aunties and uncles and cousins just a couple of doors or streets away. It was been a boon to us to be able to share this special upbringing with all of them. They have been able to join in conductive activities, ask questions and take over some of the practise sessions, but only because the conductor was working in our home. Family members can not only go for a walk with our son but also know how to encourage his awareness in the street. Children in the extended family can play board games with our son, knowing how to help him to throw the dice for himself and knowing not automatically do it for him. They can do this because over the last fourteen years they have all at some time joined in, asked questions and been shown how to help our son for the best by us or by the conductor.

Going on into the world

We have been able to introduce Conductive Education to other areas of our son’s life through the conductor's making visits to schools and work placements, and attending parties and social events in the village with our son and family. The conductor has also taken part in many of our son’s normal day-to-day activities, like visiting the hairdresser, taking bus rides, visiting museums and restaurants, encouraging independence in these areas of his life too.

We do our best to encourage our son to live as independently as he can, to take an active part in life in the same way as do all our children. It is very important for us to have a conductor join our family two or three times each year to continue advising us and teaching our son new skills for his ever-changing life.

Our son is now at work in a sheltered workshop for disabled people. We feel that it is very important to continue working with a conductor during these years of transition from childhood to adulthood. Liaising between work, home and conductor continues. Most recently we have been to meetings together to discussion the suitability of work-practice placements. Solving problems in discipline at work has been incorporated in the conductive programme at home, as has choosing new hobbies and sport activities. Our son is given special leave from work when the conductor visits our home, for a total of six weeks a year – equivalent to the time-off that he would be given each year for rehabilitation.

We see no end to our son's conductive upbringing. As a young adult he is being put into more and more new situations, each bringing with it new problems to solve. He phones the conductor regularly to discuss these with her, and it makes no difference whether social, psychological or physical problems are actual, they all get incorporated and worked on the next time that they meet.

Friday, 3 December 2010

No cook book for CE

First pblished on Conductor on Friday, 5 February 2010


" ...but there is cooking in conductive upbringing"


I do have such lovely work, so enjoyable and so variable.

Sometimes I have the feeling that I am always a student, constantly learning and trying out new things.

I am me

This week I had several “conversations” about my “Weil ich bin ich” posting from last week: email communications, telephone calls and face to face.

One of the themes of these discussions was questioning what did Littlie mean. Does Weil ich bin ich really translate to “Because I am me”?

It was lucky that I was on the spot when she said it and had time to ask what was meant. Because Littlie can now talk and communicate well enough she explained it to me, but still with the help of her eyes and facial expression.

She took the time to explain because she wanted to and also because she realised that she was being pretty clever! It was important enough for me to have asked her the question and she realised this straight away.

This little girl speaks so differently when she comes out with her gems of wisdom. She is so clear and self-assured because she knows when it is something that she knows better than anyone else.

She laughed a lot during this conversation. She was wobbling around so much while laughing, but she was so sure of herself, that she knew that even though talking and laughing she was in no danger of falling over.

We both ignored the wobbling while I asked lots of questions. We managed to establish that she meant that she knew what she needed, better than I knew, because she is who she is, and I am not. I do not live inside her body and soul, she does.

She definitely didn’t mean “Because I’m me, that is how I am”.

Personal communications

When answering one of the communications that I received on this weil ich bin ich subject, I wrote how important this kind of communication is between client and conductor. I also wrote how important it is for me to be observing every second of the day, otherwise important moments go by unspoken. I also mentioned how, although group work is good, it is not the be-all-and-end-all and, even in a group, moments spent alone with an individual are very important.

It is a ray of sunshine suddenly appearing in this grey winter to have clients like all my littlies and my stroke clients who explain things to me. They tell me how they experience life and how a conductive life-style helps them.

This ray of sunshine turns into a shower of presents. I receive wonderful snippets of information from my clients, or I am shown by them how to change how we do something together, because they realise that it is better that way. Sometimes the changes are so small that only they can indicate to me what is needed. I wouldn’t know it otherwise, as the changes may only be feelings, feeling safer maybe or understanding their own body movements better, things invisible to my eye except perhaps for the look in the eye or the smile in the soul.

Personal gifts

I store away these presents. I will at some time in the future have a need for them and I can then adapt them to use in my work with other people. I shall never, though, be able to use again the solutions that I have found together with individual clients in the form in which they are stored. But I can be more aware that there are possibilities to do things differently.

Every one of my clients is different, their lives are different, and all of them are constantly changing. How we work together has to be changing with them. Because of these differences and changes it is so important for all conductors, clients, carers and parents to know that there is no recipe. There is no CE cook-book. You cannot buy CE off the peg.

A theatre of spontaneity

Conducting is very much like acting in improvised theatre (Stehgreiftheater), where the audience throws in a word or two, suggests ideas, and the actors use their stored skills to bring the work together. That is what we conductors are doing all day. We have a base of knowledge that we use to form new programmes for the children and adults. We start to build, depending on what gets thrown at us each and every day. Each day a new tasty meal is put together, and each day lots of happy souls.

We are observing, listening and using what we see and hear and feel, in order to create a hundred different dishes a day, each one suiting a client in a specific situation. One child may need the scissors upside down, another may need to hold them in the other hand, a chair may need to be higher or lower when used to do this or that. Things don’t stay the same for a minute, so there is no instant recipe.

This is an important area for discussion in Conductive Education. It is certainly something that conductors providing a service must make clear to parents, carers and clients.

Creative cookery

All too often it is established that there is a problem. Unfortunately, then, also all too often it is believed that a recipe can be found to solve the problem with a peek in a cook book. Then perhaps a conductor will be brought in to cook the chosen recipe. But then again perhaps not.

Conductive Education does not work like this. There is certainly no cook book and certainly no free gift taped on the cover, there are no wooden plinths and no 1,2,3,4,5. These are not the ingredients we need. They may be our utensils, but then again, maybe not, just as sometimes when we cook we think that we might “need” a rolling pin or a baking tin, when a glass bottle full of cold water and a flower pot will do the job just as well.

A conductive upbringing most certainly does not come in a book of recipes, and certainly not with the cook-cum-conductor thrown in.

I can at times feel that I am working to a recipe, but then I find that there are ingredients missing, the grandma or the sister or the dad, the home life or the school. Then the recipe doesn’t work. The cake doesn’t rise or the dish has an odd taste to it. A conductive upbringing needs to include everything in someone’s life and must be always changing to accommodate every change that takes place.

Of course there are lots of ideas that we can pass on from conductor to conductor, from client to client. There are, however, no recipes to write down, saying that this will be suitable for such and such or for someone else in a similar situation. It usually isn’t!

All change, all the time

CE is about change. It is about observing the changes, and listening to communications about making changes. It is about making new changes because other changes have taken place because of the last changes.....

If a child can stand up and then discovers how to use the hands while standing, then next time the opportunity arises the same child can have a go at baking bread, or playing with a dolls house standing up instead of sitting on a chair or on the floor.

If there is a problem here, I do not know whether it comes from the conductors or from the people they provide a service for. It is a bit of a chicken-and-egg story. In many situations parents, centre-managers, teachers, whoever the customer is, decide that they want this method that they have seen working on television, at a summer camp or in Budapest. They see clients developing but do not necessarily understand why and how. They perhaps do not understand how they are going to achieve such success in their own setting, so they wonder whether perhaps they can buy a cookbook!

Some perhaps get themselves a meat-and-two-veg cook book, and then employ a Michelin-star chef to cook the recipes in it.

Ask any cook

But we cannot choose any single recipe to fit the bill in our work, and neither can the wrong ingredients be given to a chef with the expectation that a well-balanced meal will be produced.
Conductors need to be instrumental in the planning of how a conductive upbringing is to be provided from the word go, not brought in to provide a service that has been decided in advance by non-conductors.

2 comments:

James Forliti - Blue's Dad. said...

My eyes felt hungrier and hungrier as I read this post. You are so right. There are so many times with my boy when I have had to simply toss something aside because it didn't work, or he didn't want it; and then the oddest little moments and solutions occur. You said, Susie. Keep going. It's poetry.

Susie Mallett said...

It is nice to start a day having read comments like this.

Facing the minus-many temperature this morning was so much easier having read this before I set out. It had the same effect as a hot bowl of porridge, warming from the inside.

Thank you for reading James.

Susie

Monday, 15 November 2010

St Martin on the horse!




Another dream come true

Laddo's twin brother just send me these wonderful photographs.

I just had to share them with you before I go off in search of a hankerchief to dry my eyes.

Sunday, 7 November 2010

The dreams of life come true

Pictures waiting for an exhibition" by Laddo, 2007



Laddo ruft mich immer wieder an

Laddo always rings me when something important happens in his life. He has been trying to contact me since Wednesday, but I have been home too late each evening to return his calls. Luckily he is persistent and today he caught me near the phone!

Life has its ups and downs for Laddo just as it does for us all. His hurdles are often very high meaning he needs a lot of help to get over them. Sometimes his life takes a turn in the slow lane so he can enjoy a settled time.

He has been settling down at work since I saw him in August, life has been a bit easier for him than it was in the last work-group he was in.

He now happily makes his way to-and-fro between home and work, and in the evening he returns to find his family still busy at the family business.

The story unfurls

This is what he has desperately been wanting to tell me for days:

One evening last week Laddo returned from work to be sent immediately by his mother to search for his father who had important news for him.

A bit of background before the news

When I was working with Laddo in the summer we stopped for a rest on the village-school wall after an exhausted walk. One of the things we talked about was how he has always been fascinated by the festival celebrating Saint Martin, a festival that takes place on November 11th each year.

There is always a lantern procession through the village preceded by "Saint Martin" riding on his horse and of course the music makers. Laddo loves horses and the story of St Martin but most of all he loves the brass-band music that accompanies all the village festivities.

As the story of St Martin goes, when the procession returns to the centre of the village, each year there is always a beggar leaning against the school wall, exactly in the spot where we were sitting in the summer. The beggar, shivering in the cold night air, is always given by St Martin half of his cloak , which St Martin divides down the middle with a sweep of his sword.

Laddo learnt all the “St Martin songs” and was always the first to be ready for the procession through the village. He was always the one up the front to see the horse and as he got older and realised that it was a performance, re-enacted by players from the village, his dream began of one day being fit enough to play the role of Saint Martin himself.

I said to him today: “ We must always have our dreams so they have a chance of coming true!”

Laddo’s dream started to come true when he went off to find his father last week and listened to the news he had for him.

A lady had been to see Dad and told him that the elderly man, who has played Saint Martin since Laddo was a very tiny laddo, had hurt his foot and could not ride the horse.

Laddo can ride, he has rosettes to prove it. He has been riding since he was four or five-years old. At one time he even had a pony of his own that lived with his Granddad’s cows.

Yes you have guessed. The lady who came to see Dad wanted Laddo to play St Martin.

I imagined that Laddo had let out a screech of glee but he says otherwise, he said he nearly cried.

I think I would have done so too if I had been there. I cannot imagine how Laddo must be feeling now.

He has worked so hard and struggled against all odds to achieve his goals. He is well known in his village as an artist, in many of the homes his paintings are hanging. Now he will be well known as Saint Martin too.

He told me that he must behave like the grown up that he is, because there will be many young children watching him with the same awe that he always held St. Martin in.

He is so proud. He has a little fear that the horse will bolt through the main street with him in the saddle, but Dad will be there beside him and I expect twin brother will not be too far away. Mum will certainly be there with the camera, so watch this spot later for images of the event.

What a coincidence that we talked about the dream only a few months ago and how now it is becoming reality.

Not really a coincidence

Laddo had told his mother about his wishes and dreams. Each person in the village had seen over the years how fascinated Laddo is with the whole performance of St. Martin. What a wonderful community he lives in. The villagers who organise the “show”, at the very first opportunity that arises, thought of Laddo as the person to step in at the last minute. Standing in for the gentleman who has been doing the job for many, many years.

If all goes well I can imagine that the elderly gentleman may feel content to hand over the role permanently to Laddo. There is no one in the village who would take in on with so much gusto and pleasure as Laddo.

He will be riding high on November 11th 2010. A huge thank you is due to those that made a dream come true and congratulations and due to Laddo, who life goes spiralling upwardly and he takes it all in his stride.

Notes

Coincidently St. Martin was born in Hungary in Szombathely, in approximately AD 316.

He began his good works as a very young man and was about the same age as Laddo is now when he met the poor man begging for alms.


Monday, 1 November 2010

Have you got bones under your skin too, like me?

First published on conductor on Wednesday, 4 March 2009



















"Left, right, up and down" ,3rd March 2009

Doing it together

Sometimes conductive upbringing is exhausting. Imagine what it must be like for a family to live conductively all the time.

When I work in a conductive groups, the children or adults go home and I either begin the next group or I go home too and get busy with my “bits-in-between for conductors”.

When I work at home with a family, as I am doing at the moment, I have a certain amount of hours when I work then I get some time for myself, not much time, but it is mine to do a few bits-in-between in. At the end of the day I am exhausted!

If families live conductively they don’t go home when their eight-hour stint is up, or hand over to someone else, it is a twenty-four-hour life and much more exhausting than the work I do.

Home and away


One of the best things about working at home with a family is that we have ample opportunity to talk. This week we discussed the experiences that the whole family has had of conductive groups in a centre and now, for the past two weeks, of conductive upbringing at home. They value both of these and their child has done well in both situations, but at the moment they are really thankful for the input at home. They are particularly interested to see how I suggest ways of solving a problems, and then leave the child to work it out for himself, offering him tips along the way. They say it is good to see, through watching what I do and asking questions, how they can live with their child at home, to give him as much independence as they can.

Home goals count double

The situation is also an eye-opener for me. I have been working with this child for six years in a group and this is only the second time that I have worked with him within his family. He is actually more independent when he works within a group, he allows a lot to be done for him at home, in fact he often demands it!

One of the benefits of my being in the family is that I can also talk to the extended family, the Omas and Opas, Mum, Dad and siblings. I can explain to them the best ways to offer assistance, or not to offer assistance, the latter being the most difficult. Not only difficult for me to say, especially to the doting grandparents but even more difficult for them to do. It is often hard for me to keep my hands away and let the child complete something alone, but I always manage to stick my hands in my pockets and let him get on with it. Imagine how difficult it is for an Oma to do. Here, however, they are tough with themselves and they are doing a great job.

More than arms and legs

My boy, as I call him is, is in my eyes a perfect “Petö” boy! I actually believe all people, whatever their age or whatever problems they have to solve, are perfect Petö clients, but this little boy really is a delight to work with.

He has so many other problems apart from his arms and legs not always doing what he wishes them to do. He is a child who I love to work with, and a child and family for whom conductive upbringing really does allow for development of the whole personality, in all aspects of his life. And for the growth of the whole family.

This boy flourishes after just a few days either in the group or at home, but here at home everyone is there to see how and try it for themselves. The whole family flourishes.

Where is your head?

My boy, who calls me his lovely English lady, is a joy to work with and so interesting.

He is a typical example of the children about whom I spoke to Dr Hári in my final exam. We spoke for an hour about something that was not actually the theme of my question, but we had a very long interesting discussion on a subject which interested us both very much. At the end she gave me my top mark of the year!

These children are those who ask you whether you are still there when they can’t see you any more,. The moment you go out of sight they believe that you have disappeared, vanished into thin air, that you do not exist anymore. Although they can still hear your voice.

My boy asked me where my head was yesterday when he could no longer see that part of my body! I asked him where he thought my voice was coming from if I had no head. He had the answer immediately, “It coming from Nürnberg (80 kilometres away) where your head is and you are talking very loudly.

Who says ears are on the side of your face?
This all depends from which angle you are looking from.


We did some drawing this week. It is a struggle but bringing results, as we saw today when his drawings of people had two arms and two legs, on the left and on the right, instead of four limbs on one side of the body as was the case not very long ago.

The eyes and nose, the mouth and the ears still turn up in peculiar places on the face, but that was better today with the stickers and mask game that we have been playing with all week.

Head, shoulders, knees and toes, knees and toes

Lots of games are needed to develop both spacial awareness and awareness of where arms and legs are, in space and on the body. Where up and down and inside and outside are. Some children think that there is only half a car there when they only see the nose and the passenger doors of a toy sticking out from behind a sofa. The rest simply does not exist for them, just as my head didn’t exist when no longer in sight.

We did lots of things yesterday to develop these skills.
We went shopping and we baked pizza.

Where is the cheese?

In the supermarket there were directions to follow to find the ingredients, top shelf, bottom shelf, orange box, green box, a little bit to the left or to the right. As well as standing on tip toes, stretching arms, crouching down and steering the rolator around packed shelves and busy shoppers. Head just had to be held high.

Fine motor practise at the check up

This held up the queue a bit but everyone was all smiles and I kept my hands stuck deep in my pockets. I only had to dig them out once, to catch a jar of mushrooms, as we didn’t want any dropped jars to upset the apple cart and spoil the fun.

There is a picture above showing how while baking we drew a grid on the pizza to prevent a “pile up” of mushrooms or salami! There was a tendency last time that we made pizza to make the same movement over and over again, not to move the eyes and always to look in the same place. The rest of the pizza which was out of sight got neglected and therefore didn’t get any topping. Using the grid we developed a method of placing six slices of mushroom in each square with one pepperoni and one slice of salami, all topped with a small handful of cheese. As you can see it worked wonderfully. Everyone got a bit of everything on their slice and it tasted good too.

Footnote

The title of the posting refers to a question that I was asked by my client yesterday. The answer took a big chunk of our time but it was worth it, Granddad overheard and was really impressed by the level of our discussion!

Another snippet of our funny conversation

Me – “Oh well done! You are really good today.”

My boy – „Hast du das auch gemerkt“ – Did you notice that too?

Monday, 25 October 2010

A change in practice

This was first published on Conductor on Saturday, 21 February 2009

I have decided to repost it here on "Upbringing" because of just one sentence that caught my eye and summed up for me the change being spoken of in the condcutive world. The change thatis already taking place,or still needs to take place in conductive work of the future:

"It is essential that parents, partners, carers and the clients all understand what conductive upbringing is all about, that it isn’t about lying on a plinth and counting 1-2-3-4-5 while a leg or an arm is being bent, that it is about something much more than this.

It is about learning to live,..."




Looking forward to spring by Susie Mallett

There is quite a long correspondence going on in the comments section of one of my previous blogs:
http://konduktorin.blogspot.com/2009/02/shoe-laces-cipofuzu-schnursenkel.html .

The correspondence is about camps and how parents learn about conductive pedagogy and conductive upbringing if they are experiencing a conductive camp for the very first time (or second or even a third time come to that).

Who needs a plinth?

It is essential that parents, partners, carers and the clients all understand what conductive upbringing is all about, that it isn’t about lying on a plinth and counting 1-2-3-4-5 while a leg or an arm is being bent, that it is about something much more than this.

We need ballet, driving, singing and snow!


It is about learning to live, learning how to attend ballet class, even learning how to get there alone. Learning how to stand up and sing at choir practice and even once more becoming the conductor! It is about learning how to get in and out of a car and maybe one day driving it yourself, or about dressing yourself to go out in the snow then learning how to build a snowman.
It is about motivating oneself to be active in the life that one has at this given moment, and it is about continually striving for change.
It is about spiralling upwards and onwards, with everything that we have already learnt influencing every other thing that we have learnt, and influencing absolutely everything else that we do. It is about living with a soul that is healthy.

Relating and giving conductive tips


A child or adult client, parents and carers need to be shown how to relate the tasks given in group to real life situations. Yes, it may be easier at first to hold a solid stick in both hands and bring it behind one's neck but would it not be a good idea to actually make clear that in doing this movement we are learning to put a scarf around our neck, or lift our arm to comb our hair, and then actually try it out with the real thing, try it out in the bathroom at home with a conductor giving tips!

I am not saying that these things don’t take place at camp. Of course the children get dressed and go outside, fetch themselves a drink from the fridge etc, but if there is something missing then it is the link between the tasks in a programme and real life.
And who do we need to provide this link?

The parents and the carers, and the conductors.


I have heard it said so many times that clients have suddenly realised why they practise specific tasks, the penny drops and they realise that a certain movement facilitates a certain activity at home. I sometimes hear from parents (or carers) that they didn’t know how their child/ partner had learnt to do something independently in a group.
Both these statements tell me that there is a failure somewhere in communications, something is missing. That same link is not there to real life.

What can be done to change all this? How can this link be forged?

I have recently had the experience of working at a centre where the children attend groups regularly throughout the year but, because of the great distance travelled, the families stay at the centre, just as they do in many camps. I have seen the many hours of living done as a family outside group, hours that could be utilised. The question is how could this be done to give the whole family the best during their precious few weeks at camp, how can they gather as much information as possible to take home with them?

I suggested, in a comment on my previous post, that perhaps providing another shift of conductors who would work outside the group hours might give the answer. Conductors to work alongside the family, there to advise when out on shopping trips, when getting in and out of the car, getting on and off a bike, when playing cards or board games, preparing breakfast, dinner and tea together. The conductors there to give tips on how the child might be as active as possible in the daily life of the family.

Another suggestion, more on the theoretical side, would be to provide seminars in the afternoons or perhaps in the evenings for parents and carers. Perhaps something about Dr András Petö and his life, the development of the Petö Institute under Dr Mária Hári, the bringing of Conductive Pedagogy out of Hungary, how the many different countries then developed and changed it to suit their personal situations.
Most importantly there could be lots of practical examples to show what conductive upbringing is about and lots of question-and-answer sessions.

I have the feeling that something needs to change. These camps are so important to these families, they save up their time and money to attend. It is the responsibility of the service- providers to see to it that after a five-week camp that parents and children alike go home with a very good understanding of what it is all about.

In Germany

My work in Germany is very different. We have regular contact with parents, carers, adults and children. They live locally so we can phone and make house visits. We can be called to meet teachers and physiotherapist. We can be there when a new wheelchair is fitted or when new moulds for shoes and splints are made.

When I have new adult clients coming to my groups I usually make a home visit before we begin working together. We can spend an hour or two talking about conductive upbringing, the groups, our aims and their personal needs. As work in the group proceeds it is essential that in every block we spend some time discussing conductive rehabilitation and how the clients use at home what they learn in the group. We discuss their everyday lives, other family members come in to join us, to observe or ask questions, and everyone gives everyone else “conductive” tips.

Children usually come into the centre for an initial assessment and this is also gives the conductor the opportunity to explain about conductive upbringing and to give printed information and answer questions. In subsequent parent’s meetings, with and without the child present, we can discuss the child’s progress and what is happening at home and at school on a regular basis. We can talk more about conductive upbringing.

We work with the children and adults five times a year in our groups, bt they live locally and we have contact them all the time. I visit other families up to three times a year in their homes and we have regular telephone contact with each other in between times.

We have a different system here to that of the “camps” We do offer a “conductive holiday camp” to our “regular” children in the summer, although these are usually just for the children, parents don’t stay on site. In our system ,with regular contact between families and conductors, we do not have convey so much information in such a short time.

There are twenty-four hours in a day

So back to the question how do parents at camp learn about conductive upbringing. They are there on site twenty-four hours a day for several weeks. Their children disappear into group for maybe six hours a day, where they are working with the conductors on the programmes developed for them. Maybe it really is time to use those hours outside the group time to help the process along.

What do you all think?

Do you already do this/experience this?

Is it already happening?

4 comments:


British Conductor said:

Hi Susie, I have enjoyed reading your blog for sometime now and you have certainly hit the nail on the head with this posting.

At our centre we realise that we are not doing enough to teach the parents/adult clients how to follow through with their learning outside the program. We see the majority of our clients once weekly then for an intensive 'camp' during the summer. Our main problem is that with the time spent in programs through the week, we have not had much formal time to provide the necessary training to the families we work with. One could argue that we are spreading ourselves too thinly, but our past goal has been to enable access to a good quality program to meet the need and demand and successfully establish a permanent program. This means that 'spare hours' though the day have steadily been replaced by new programs and new groupings of clients. We desperately need more conductors, more space and more funding to enable the conductors/space to be reality!

Currently during informal discussions at the beginning/end of the programs we do offer advice and suggestions for each child on how to develop their skills and apply what thy have learnt at home and at school and often follow this with reports and written documentation, but I am sure that without the background understanding of conductive pedagogy and upbringing, this 'advice' does not translate to the home environment well. Similarly, we have often had classroom assistants from schools attending with a specific child with the purpose of teaching them the skills to follow through with the child's achievements at school and this has been successful.

We even have an observation room that enables parents/carers to watch. The problem with this is that their observations are not directed and the activities their child takes part in are often misinterpreted. We also have other professionals observing occasionally who similarly do not interpret accurately what and why the clients are doing the tasks and activities. Another 'training' issue to be addressed in the very near future.

We have some handout type information, but with the large range of clients we now see -this has to be revised and revamped to cover relevant topics for different client groups (another issue of finding the time).

Our vision is to be able to provide training sessions/meetings in the evenings for parents/carers/clients to attend to enhance their knowledge of what our program is all about and to help them gain maximum benefit. I guess we need to set ourselves a schedule to get this training in place. Time and energy are really the only factors holding us back and on reading your posting you have certainly inspired me to find the time and get our new and improved conductive program up and running by the summer time.

Our progress reports, written 3x year for children and 2x year for adults contain a section on recommendations in which we ususally give or reiterate ideas to follow through with at home and at school. Again I feel like with out the prior in depth understanding of conductive learning and upbringing it is difficult for the families to translate to their everyday routines. Also, it requires us to give step by step advice to follow through with at home instead of teaching the families to develop their own expectations and opportunities for their child themselves.

I recently attended the chiropractor for the first time, who before even meeting with me to discus my needs, provided a information session that was compulsory to attend before beginning treatment. This gave me huge insight and understanding into his practices and theories and enhanced the treatment I received. This is the type of provision I hope to be able to introduce along with regular 'refreshers' with opportunities to deal with questions and give specific advice. I would be interested to hear if anyone already runs this type of programming for parents/carers and to get advice on getting this process started.

I feel like despite being a small centre (2 conductors) we have the same demands in terms of training, recording progress, developing an understanding of the CE program as the larger institutions, but with way less man power, time and resources.

Susie, you have picked up on the main factor holding the development of our clients and program back and I take full responsibility to remedy this situation. Thanks for keeping me focused on improving our conductive practices.

Gemma


Kate's Blog said:

How the exercises apply to everyday life? I can tell you extensively which things my little eight year old has trouble with. I can't tell you which of the exercises here at Ability camp will help improve some important functions she needs to accomplish tasks. Here is one example, all weekend Cassie had trouble getting in and out of a chevrolet pick up truck. The step was high, the bar slick, one time she managed to climb in and was stuck amost laying on the floor yelling for help, She got her legs twisted up a few other times. These situations embarrass a high functioning girl who is extensively trying to exercise and strengthen her body. I have about 20 more tasks that frustrate my girl because she cant quite get her body to work when she needs it. But hey who bothers to ask a parent before they begin to assess and treat. Parents input is invaluable and if it is not a team effort the gains will be very slow for a young child.


Susie Mallett said:

Kate, thanks for keeping the discussion going.

It is really important that clients, whether children or adults, know why they are doing the really quite abstract movements in the conductive programme. They must talk about which part of their daily life each movement relates to. They, their carers and/or parents need to discuss with conductors what is it that is difficult for them in their daily life at the moment, identify where they wish to become more independent or efficient. Establish what it is that they want to learn.
The programme needs to be formed so it will be continuously developing these needs, and continuously relating the practised movement to the real life situation.

The ability to relate the abstract to the concrete is so important, without it how is conductive living going to take place?

It is in order to build this relationship between the two, between the abstract and the concrete that I put many “bits in between” in my work. This means a lot more preparation work is needed but it makes the “work” easier for the clients. We all know it is easier to practise a movement when the need for a movement is actually there. While being creative it is much easier to crouch down to retrieve a dropped pencil or to clean up some spilt flour from the floor. It is easier to lift a hand with a paintbrush to finish the highest corner of a painting just as it is easier to bend and stretch while unloading the dishwasher and putting things on the highest and lowest shelves. It is easier to do all of these than to stand at the wall bars and do a standing or sitting programme.

Today we were going to put so much into practise of that which we learn in a more formal setting in the group. We were going to shop and then cook the lunch but four inches of snow put a stop to that, snow and rolators are not very compatible.
We have postponed, but not cancelled, the activity due to the weather.
Mum could have gone shopping for us but then we would have missed out a lot of the “bits in between”. For example the step up into the car which replaces a wooden box, the stretching of arms to the high shelf were the cheese is that we need, the crouching down to pick up the pennies we dropped, the pinching of coins to count out the money, the reading of the list or looking at the pictures then finding in the shop what we need. We would have missed out on the necessity to walk head held high while searching for items around the shop, instead we would have practised this with a bean bag on our head in the group which is fun but very abstract.

Of course I am not saying that the formal programme is not important or is not necessary. What I am saying is that it is no use to anyone when a child who learns so much in this formal way in a four week camp has no idea what for and can not relate it to every day life. If the parents and carers have no idea either how on earth can conductive upbringing take place.

The practice carried out at the Petö Insititue for years and years and as far as I know still being practised, could possibly work in boarding schools in other countries when there are only conductors responsible for the upbringing of a child. There was little or no parental involvement because the children were rarely with their parents. The conductors did it all, the formal and the bits in between.

At a “boarding school for four weeks”, a camp, there needs to be a different kind of practice. Conductors are only responsible for the upbringing of the child for a very small part of the day, and a incredibly small part of the year. It is absolutely essential that the parents/ carers are involved otherwise we must ask ourselves what we are trying to teach the child or the adult in this short “abstract” time.


Susie Mallett said

Gemma, thank you for taking so much time to write this long and interesting comment. I was absolutely thrilled to read it.
I would like to pick up on some of the points you made.

I have experience of working in a centre with an observation room. The door was always open so both the parents, carers, teachers and therapists spent a great deal of time watching the group. It became very apparent as the course developed that the parents were not understanding or were actually misunderstanding most of what they saw, or thought they saw.
I am always happier when visitors sit in the room we all are working in so they can be involved in the work more directly. I think that an observation room can only really be of practical use when a conductor can sit there along side the visitors and talk about what they are watching, answer any questions and clear up or avoid any misunderstandings. This could perhaps be developed so that visitors are given some observation points written on paper which can be discussed afterwards with the conductors.
As you point out in a small centre with a staff of two it is impossible for a conductor to be sitting in the observation room and to be leading the programme at the same time.


There are many differences between centres which offer services to clients on a weekly basis and those who offer a four week block once a year. Of course there is a need to educate all those involved in each of these situations, but when clients attend on a regular basis there is always the chance to catch up with questions that have cropped up during the past week. When a client lives miles away and will perhaps only meet the conductor again in six months or even in a year, this regular exchange of information and ideas is much more difficult. Although technology could rectify this.


I too have learnt a great deal from personal treatment from different kinds of therapist which I have found very useful and been able to apply in my work. Not only as you describe from the information sessions they provide, but also from experiencing the physical closeness of a stranger touching my body. Our clients are in constant physical contact with strangers, doctors, nurses, physios, orthopedic shoe makers, conductors, etc.. I wonder if they ever get used to it. They appear tolerate it very well, but I am not sure that they actually get used to it.

Thank you again Gemma for getting involved in our discussions. Please keep the comments coming and if you don’t have time for your own blog feel free to let us know more about your work by using the comments facilities on the blogs of others.

24 February 2009 20:40

Friday, 22 October 2010

I wanted to say some more about painting

The following posting and part posting appeared on Conductor in January 2009.



Tuesday, 6 January 2009

Snow in the city

From drab to sparkly and tingly overnight, just like Cinderella going to the ball!

We walked and did other things indoors, like observing the snow from the window.

I am still so inspired by the snow and the light effects from Norway, with its pink skies at night and never-quite-light days, with the blues and purples reflected in the snow, that I had been talking to my clients about it. It is really quite a change for our senses when suddenly overnight our surroundings change from the winter drabness of the grey and brown earth colours, with a hint of dull green and black branches of trees, to a delight of dancing lightness when it all becomes covered in deep snow.

The white reflects the light and a weak sun changes the colours constantly, shadows on the ground are no longer black they take on colours, either warm or cold.


I talked to my clients about all of this, about the brown-to-white overnight, about the colours and the whiteness, the shadows and the shapes. I did this with the hope of inspiring them in some painting. It is difficult to guide people to see what is there and to help them transfer it to paper, rather than for them to put on the paper what they think they see, without actually looking. It is just as much about changing how we think and see and move as all other aspects of my work.

We attempted some paintings of our German snowy landscape which, although very different to what I experienced in Norway, was still very beautiful. I put a selection of papers and colours on the table and we had thirty minutes' relaxation with music and painting and enthusiasm.

http://www.susie-mallett.org/2009/01/snow-in-city.html



January 5th 2009

Wednesday, 7 January 2009

I wanted to say a little bit more about painting

Organised spontaneity

In the Tuesday evening workers group I rarely plan any "extra activity". Most often it occurs spontaneously, depending on time and inclination. This is the advantage of working in a very well equipped and organised environment: everything is at hand, which makes organised spontaneity always a possibility.

Just a minute, was that a hint of hesitation?

The reactions that I received yesterday to my suggestion that we painted the beautiful snowy landscape were very interesting. One woman was immediately engaged but the gentleman seen in a picture on my previous posting and at the top of this one, was very hesitant. This man with athetoid cerebral palsy had surprised himself with his dexterity last week when we were sweet- making and he was about to do the same with painting. His arms, which tend to flail around when he attempts to grasp something, suddenly calmed when he quite spontaneously extended two fingers of one hand on to the forearm of the other hand, which held the paint brush. In this manner he painted to his heart's content! There was not one drop of paint or water flying across the room as he feared might be the case and had prompted his initial hesitation

What did I do?

I certainly didn’t teach him to paint. I certainly didn’t teach him how to hold a paint brush. The time was much too short. What I did do was to give him was the opportunity to be active.

In the group I give him the opportunity to use his arms and hands in many situations and, as most athetoid clients do, he finds his own solutions, usually by combining the many suggestions that I make to suit his needs.

When I suggested painting he was afraid, as this is a relatively new activity for him and he had yet to discover that some of the solutions he uses in other activities in his life could be just as well implemented here, or very easily adapted. I reacted to this fear by not reacting at all and by assuming that all would be fine (and being, as always, prepared to clear up lots of mess if necessary).

Deviation
I had actually planned on sitting down and painting with them but I was so engrossed in observing how this young man controlled his movements so spontaneously that I got stuck with the camera in my hand instead of a paintbrush.

Repetition

Again, I ask myself, what did I do? Initially I had ranted on about the lovely light and colours and dancing snow but my client just wanted to give it a go and overcome his fear, especially as the other lady was almost finished with her snow-covered trees. So all I did was to stick the chosen paper on the table, squirt the delicious paint on a plate, arrange three different-sized paint-brushes beside it and say “Off you go”! And off he went, very successfully at that, in the manner described above, calmly creating a picture that he was very proud of.

http://www.susie-mallett.org/2009/01/i-wanted-to-say-little-bit-more-about.html

Notes

Just a Minute

http://en.wikipedia.org/wiki/Just_a_Minute

http://www.bbc.co.uk/iplayer/console/b00gbc96

Wednesday, 20 October 2010

Life can be painful

First published on Conductor on Saturday, 20 September 2008

There was some pain in the stroke group yesterday and in the MS group today. There was pain in my shoulder all last week and pain in two of my colleagues backs. It seemed appropriate for me to repost this article all about pain.

Schau mir in die Augen, Kleines


The all seeing eyes, 15th September 2007, by Susie Mallett



Can I show you my pain?


Today I was working with a client who looked deeply into my eyes and asked “ Would you like to see my pain?”

What could I say?

I could have answered that I had been looking at him since the session started and seen the pain in his eyes all the time, and not just the physical pain, the emotional pain too. I didn’t say this but we did talk about his pain and what we could do to relieve it and to work with it.

This client had been in a lot of pain for a long time and the cause of it had been overlooked. He had conceived the pain from a broken hip, that happened in a fall, as knee pain and therefore the knee had been x-rayed several times but not the hip. So the actually injuring remained un detected for many months.

A dreadful mistake and a common experience

I have worked with many teenagers and young adults with cerebral palsy who have had hip operations and they have all told me that the pain often appears to be more severe in the knee than in the affected hip.


Now the physiotherapists and I are trying to get today’s client back on his feet and to do this we have to overcome the real and the imagined, the physical and the emotional pains.

When my client asked me if I would like to see his pain I told him that I knew he had pain and, above all, I knew the difficulties that he must be experiencing from such an extreme change occurring in his life. Having been an independent person, walking without aids and needing little help to lead an active life, he now needs to use a wheelchair and depends on others to help meet many of his needs.

We talked more and I told him that there was no need to show me his scars, which was what he meant by showing me his “pain”. We discussed how much pain he could bear and how he should tell me when we should we stop working because the pain was too much. He became calm and responsive and appeared almost a different person – he had started to communicate with me at last.

Talking about pain, not ignoring it

As a conductor I am confronted by pain every day but when I was a student this subject was never discussed in detail, it was not the subject of any lectures, it was not something talked about during practical training.

I have had to learn about this on the job, through my contact with clients and through discussion with another conductor...

Tarczay Klára had taught me at the Petö Institute, I still pick her brains when we meet and collect her wonderful tips, and it was she who told me as I finished my training - “ Keep an eye on your clients, look them in the eye, for there you will see almost everything you need to know”. How right she was, I have practised what she told me for many years and today as I worked I realised it is time to write about it.

The pain threshold

I can see when the pain threshold has been reached by looking in the eyes of my clients. These clients often wonder why I ask them to work on certain tasks with their eyes open, I explain and some smile knowingly at me while others immediately shut their eyes again, not wanting to reveal anything!

Stroke clients


In my stroke group it is so important that I see when this threshold has been reached. The clients will often push themselves too far and it is my job to put on the brakes. It makes the difference between achieving that which we are aiming at, gradually increasing the range of movement and having a painful inflammation in a joint. Here is an actual example, from practice in the stroke group.

The clients are on the plinths, on their backs, aiming to lift their clasped hands above their heads, bringing them down on to their foreheads and finally sliding them down behind their heads into their necks. This very complicated movement can be the cause of pain in many places: in the fingers, in the back of the unaffected hand (spastic fingers digging in), in wrist or elbow and in the most likely place the shoulder. Usually no one complains, no one refuses to do it, all those who are able attempt it do alone while the others wait for assistance.

I need to be in control here, I move up and down the row peering into each person’s eyes, from where I receive the information that I need so I know when to say stop or when to begin a different task.

Try it out, it works nearly every time, you can have even the toughest, most highly motivated person in the group who never gives up and never complains, but you will see his pain in his eyes. Such high motivation is good but experiencing unnecessary pain is not the aim of our conductive work, experiencing improved movement is, and we have to find the balance together with the client.

Some stroke clients experience a different kind of pain. A pain which is very difficult to describe so I will use the words of a client I have known for ten years and who, over the years, has explained to me in great detail many aspects of her disability and her rehabilitation.

She tells me about what happens as feeling begins to return to her fingers and how everything she touches with her fingers is experienced as pain – "It is only the hypersensitive peripheral nerves", she tells herself over and over again, until her sensory organs have understood the difference between a gentle touch on the skin and a painful prod. Each time that she feels pain in yet another part of her body that has been paralysed by the stroke she repeats the same process. It may take days or weeks before she perceives the “pain” as a feeling of touch similar to what she experiences over the rest of her body, but however long it takes eventually the pain is replaced by normal feelings.

Now she tells me that each time she experiences such pain she can smile even though it hurts, because she recognises it as the beginning of yet another step in her healing process.

We can assist this path to normal feeling by alternating warm and cold, rough and smooth applications to her hand.

Pain and spasticity


Spasticity shoots into a muscle, or more than one muscle, it is visible as arms fly up, a head jerks backwards, legs stretch out or the whole body folds up in a ball. But less visible is what is felt, as
this process is more often than not accompanied by pain.

Not just pain caused by a resulting fall or from knocking a bony elbow on the wall, there is pain in the contracting muscle, something similar I imagine to the pain that we all have experienced when getting cramp in a leg during the night or when playing sport.

It hurts, but our clients rarely tell us this.

I try to teach my clients how to anticipate this contraction and stop it before it begins. They practise breathing, they count, they learn how to move their bodies to minimise the pain.
They learn to react to their bodies and relax the muscles before the spasticity shoots in.
It is a long learning process, especially with adults. As conductors maybe we should also be considering how conscious we are of this problem when we work with children with cerebral palsy, are we doing enough to teach them how to achieve a life with less pain? Even to let them know that we recognise that they have pain is a step in the right direction, as I experienced with my client today.

Pain and multiple sclerosis

Again I write from the mouth of a client who describes the twitches and jerks, accompanied by pain that prevent the body coming to rest at night and prevent sleeping. He also describes having a pain in his body like a wide metal belt being tightened around his waist as the spasticity in his muscles increases. He talks about the pain as he slowly stretches his legs in order to stand up and then the increased pain as they suddenly jack-knife back to the bent starting position.

He learns in the conductive group through breathing exercises to relax the muscles around his waist and therefore reduce the pain, he learns actively to stretch his legs only to the point just before spasticity shoots in, he learns to actively bend and stretch his legs to reduce the jerks and twitches, and the pain, and therefore allow his body to rest.

This client has also learnt to talk about his pain, to describe it and to work out how to minimise it, but many clients do not say a word and this is when I need to recognise it and be prepared to discuss it with them.

People with multiple sclerosis are liable to push themselves too far, they find it hard to recognise their own limits. It is very important for these clients to learn that even though today they may feel fit to conquer the world, tomorrow is another day and they then may regret having exerted themselves too much.

Through a conductive lifestyle they can learn where their limits are, they can get to know their bodies well enough to say "If I do this today I will feel like this tomorrow”. They learn to decide for themselves how much exhaustion and how much pain they are willing to have tomorrow in order to do something today. They learn how much exhaustion or pain their body can endure without making their symptoms worse.

As a conductor I must know my clients and their symptoms and through our programme show them how they can learn this too. I need to know whether we should work with weights on the plinth today and still be able to move the arms tomorrow. Tomorrow’s pain I can’t see in the eyes of my clients, it isn’t there yet, but I can see the tiredness or the exhaustion.

Personal solutions

My clients learn their own methods to solve their problems and reduce the pain. One client strokes her upper arm and talks quietly to it, another stares at his hand and talks sternly to it. They all learn which tasks to do and which not to do and I learn when to put the brakes on and I continue to look into their eyes while they learn to look back into mine.

Dealing with pain and stretching its boundaries is a very difficult aspect of my work and it is one which rarely gets discussed. How much pain can I expect a client to experience how much is an individual willing to experience. Each client is different, each client’s body reacts differently on reaching and crossing the pain threshold. Conductive upbringing and lifestyling is not just about exercising, but the tasks are part of it and sometimes they hurt, just as walking or putting on a jacket or holding something in a paralysed hand can also hurt. As a conductor I must recognise when enough is enough or when to push on just a bit further. I must know when pushing on will do good and when it will do harm. Not only must I know these things I must know how to teach my client to recognise them too.

Yes, we should reach that border and go slightly beyond it to stretch a muscle a little, to achieve a bit more movement, but for clients to have so much pain that I can see it in their eyes, no that is definately not what my work is about.

Through conductive living clients can learn how to build up their stamina and strength, they learn to become more active or to increase their range of movements, all without experiencing unnecessary pain. We can use the rhythm of the movement, the direction of the movement and the speed of the movement all in controlling pain. We can speak and count and improve breathing techniques, we can learn about all aspects of the body and the influences that the whole of the daily routine has on it, including the influence of the weather!

The "pain of tomorrow" I can anticipate only through experience and in the group we can build up stamina and strength and learn the movements needed to prevent it being there at all.


No pain, no gain!

My german clients often say to me while we are working that nothing can be achieved without some measure of pain, the slang phrase they use "Ka Schmerz, bringt nichts" translates well into English as "no pain, no gain!"

Together we learn to discover the limits and achieve the balance between the two, between the pain and the gain.


Notes

Tarczay Istvánné- Vezetö : Felnött Nevelési Egység , Head Conductor, Adults Department, Petö Institute.

Casablanca- Dirk Bogart and Ingrid Bergmann
In the German version the last sentence Rick says to Ilsa, “Here’s looking at you, kid”, is translated as “Schau mir in die Augen, Kleines” , (“Look me in the eyes, little one”).

1 comments:

Laszlo said...

Dear Susie,
I have just read a paper on lived body experience. In it there is a part which deals with the experience of pain in a group of osteopathic patient. It provides some evidence to suggest that the people in pain view their pain as impersonal, yet, at the same time, they recognise the deeply personal influences pain has on their lifes. They seem to demonstrate an adherence to a mind-body dualism in their behaviors and their accounts. The paper is by Robert Shaw, the title is "Towards a sociology of lived-body experience" in The Journal of Contemporary Health, Issue 6/ Autumn 1997. I enjoyed reading it just as I did your post about pain because as you mentioned it correctly we never had such conversation about clients' possible feelings during our training at the Peto Institute. If you were lucky or interested you could have personal discussions with teachers, by for example Tarczai Istvanne but pscychology lecture times were never used to learn about such things.