Transitions in the family

"Another summer storm on the way"
by Susie Mallett, 2011

I am off to work in a few weeks with Laddo who is now twenty-one years old and should really now be called Manno!

Not only because of his age does he deserve to be given a more manly name, more because of the new life-style that he is developing than his age. He is becoming quite a man-of-the-world.

His mother phoned just to check that plans were still as we had made them six months ago as they will be on holiday until the day before I am due to turn up for work.

With business settled I asked about Laddo and his life. Mum was so proud to tell me, and she knew also how pleased I would be to hear that her twenty-one-year-old son travels home from work on public transport, changing buses in the city.

We have practised it now for two years and although I have always believed it possible I also wondered whether, if I was the parent, I should say “OK try it alone today”. Laddo’s Mum has practised this too often meeting him halfway in the city to go for various appointments or shopping. Sometimes they would go home after the appointment in the car together and sometimes Laddo would go alone on the bus.

Laddo has also been making his regular, monthly trips to my conductor-friend in Paderborn and that has really helped to increase his streetwiseness! He can now look where he is going by his feet and straight ahead without stumbling or knocking into too many people.

Mum also mentioned that a lady had stopped her in the village bank to ask if it was possible that she had seen Laddo in the city alone. “Oh Yes,” said Mum, “that is quite possible”. The lady also went on to mention how sad she finds it that she cannot have a conversation with him when she sees him as she cannot understand what he says. To this Mum replied; “Keep asking him to repeat it until you do, he is very patient!”

She is right he is very patient just like Littlie with the black-eye this week, there is something in both these personalities that encourages them to communicate with people.

I first met Laddo and his family when he was six years old.

All of the family not only the parents but siblings, cousins, grandparents, uncles and aunts and also many of the eight-hundred local villagers, have worked all of Laddo’s life for his independence.

I think we all could not ask for more than to celebrate together Laddo’s twenty-first birthday and his freedom to go out on his own.

What a transition that family is going through, yet again.

Questions

First published on Conductor on Saturday, 14 November 2009

" Rosehips" 1976 by Susie Mallett

Questions at the Working Men's Club

I have a men’s stroke group at the moment. A sort of working men’s club, with me as the only female member. They seem to be loving it.

We have a lot of fun and we work very hard. Sometimes I have to be really strict as they lark about so much but we can also be very serious at times.

I think that maybe for some of them I am one of very few people in their lives, perhaps for some the only person, who talks to them about the invisible problems that are part and parcel of being disabled by a stroke.

I get the group talking to me and to each other about their lives. Their partners come to the group and we get them talking about their lives too.

I encourage them to ask each other questions by doing the same myself. They talk to me and then to each other about what is going on every day in their personal lives. They do not only talk about their aches and pains, slow movements and spasticity, their double vision and other symptoms. They talk too about how their disabilities and invisible problems affect their whole families.

On Thursday there was a breakthrough, most probably influenced by having a new member in our midst. This new member is someone who still has such a long way to go before he joins in our conversations spontaneously but who is being included in everything that is said nonetheless.

This long-established rest-of-the-group have learnt from me how to ask questions. They do it just as I do, encouraging our new group member to take part. They are actually getting really so good at it that I tell them that they do not need me anymore. I can take a back-seat, I have just about lost my job!

Although when I threaten to leave them to it they are not quite ready to try it out.

The group is now aware that they can help each other by asking questions and that by doing so they can also help themselves. Not only because they are practising their speech and recall of words but because they also put their abilities to visualise themselves in someone else’s position into practice. they begin to learn to empathise with each other. After a stroke this ability is often lost, or when not lost often it cannot be expressed.

In the group they learn how to consider what other people may be experiencing and look at this in relationship to their own lives. They realise how invaluable their own experiences are and as they learn how to share these experiences with other members of the group, they begin to notice that they can also teach others. Including me.

People who have only recently suffered a stroke really can benefit from the experiences of the others and this is what I encourage in our half-an-hour's so-called break. This is in fact a very important part of our programme, the “question and answer” time.

So the group is slowly taking over my job. What a joy it is to watch this. It is lovely to observe how the group members take note of how they can gently push our new member until they receive the appropriate answers to their questions. Somehow they know just how to do it.

They are always kind, they always wait expectantly for an answer. There is no pressure experienced, as perhaps there might be if I was the one to be doing the asking and trying to encourage speech.

They were, and some still are, all in the same boat, so they do not find it difficult to imagine or visualise how the other one feels. Many know from first-hand experience. In our group they learn to put this experience to positive use.

Not all stroke-sufferers remember this time immediately after suffering a stroke. This is not always stored in their memories. Through the make-up of our group, with beginners and advanced clients all working together, they are able to see what progress they themselves have made by being with the newer group members and watching how they progress. The new group members see and hear about the progress that is possible and are motivated, even when they know that it has taken some clients up to ten years to achieve some things.

The choir conductor

It is hard, even for me, to visualise how it was for one of my female clients who is not with us this month. Ten years ago she could hardly utter a word. She is my “singing client”, the choir conductor!

She is the lady who now cooks and cleans and sews and paints, speaks on the phone, uses the computer, sings and thoroughly enjoys life.

She phoned me a few minutes ago asking me for the URL of a newspaper article that I mentioned in my blog this week. She is off to court on Monday to fight her case for her carer, (yes, as ever it is about finances). She is gathering as much information as she can find on Conductive Education and the other things that she does to live her healthy life, to state her case. She is doing this mostly by herself, of course with the assistance and advice from her family and all who touch her life.

When we first met she could barely string two or three words together. This lady is now one of the best motivators in the group. She can explain in detail the processes that she went through in all areas of her progress and development. She describes the return of physical feelings, that at first were experienced as pain, she talks about re-learning all about her body imagine and the awareness of herself in space.

Best of all she describes how it was when she first started to speak. How she heard this strange noise and always looked around to see who was making it until one of her family told her that it was her. It was at this point that she started learning to speak properly.

This is the way our group works, sharing and learning and questioning and having fun in between.

The Russian, and me

It is a breakthrough enough to have this all going on in the group, but yesterday there was more.

One man went one step further and realised that I am there too. That he could communicate with me on a different level. He asked me:

“So what’s going on in your life?”

I must explain here that this man is from Russia. His speech and communication skills have improved over the past few years in leaps and bounds. He lives, just as I do, much of his day in his second or perhaps third language.

What happened when he had a stroke I can only guess at and ask his family. Of course, I do not speak Russian. I don’t know whether his mother tongue has been affected by the stroke in the same way as has his second language, I do not know how well he spoke his second language before the stroke. He now speaks it well, much better than when I first met him a year after the stroke. But I don't know whether this is recovery from the stroke or if he is learning to speak the language better.

He is now able to joke with us and show us his real personality. This is the stage that I love.

Working with people who speak and use two languages every day and have had a stroke is really very interesting, especially as I personally know what a muddle it can sometimes be speaking German and Hungarian every day and with English buzzing in my head.

This man is now able to relate very well to other people. He has progressed so far that he can visualise that they too have a life of their own. Hence the question he posed.

I am thrilled that he has progressed so far. He was brave and confident enough in the group to actually ask me about me and he asked so nicely. He wasn’t abrupt as stroke suffers can sometimes be, he wasn’t too inquisitive, he was friendly and worded his question subtly so I could answer whatever I liked.

I was so pleased that I really did give them a "snippet" out of my life.

I joked at first and said I had been out to dinner with a man!

It was true but his family had been there too, but initially it made them all wake up in anticipation of a rather different story!

I told them that I had been out to dinner the night before with someone I have been working with recently. It was a sort of a "thank-you" and family, with his nine-year-old daughter, was there too. I told my group about what a pleasure it had been to be in this child’s company and how much I had learnt from her that I can use in my work.

I explained that often physically disabled children are not as far advanced in their social and emotional development as their non-disabled peers. Contact, as I experienced at the dinner, are invaluable to me, a huge learning experience. The little girl learnt something too as at her request we played some English games together between courses.

My stroke group found this "snippet" interesting, although I think that they would have prefered the romantic candlelight-dinner story that they had at first anticipated.

They realised that I spend a lot of my time with people with disabilities and the penny dropped that sometimes I needed some input from non-disabled children and adults.

Learning to ask questions is one big step, learning what to do with the answers is another.

I think they had a lot to think about with my answer. I could almost see the whirr in their brains as they thought about Susie and her life and her learning outside of the group.

A vital principle

What I bring into the group to help us solve our problems there has to come from somewhere. Just as the experiences of the group members,that they share and learn from come from their personal lives, so do many of mine.

Comments

Andrew said...

I wonder how many of your readers noticed as I did the lack of plinths and other 'Peto furniture' in this full and in interesting account of practice...

Where indeed were the other 'principles of CE' that some might wish or expect to read here?

I think we should be told!


Andrew.

18 November 2009 22:12

Fit for the road to life

"Roads that we have travelled", with and by Susie Mallett

First published on "Condcutor" on 13 August 2009

Keeping to the most fitting path can be a hard road to follow

I have several friends who have developed multiple sclerosis, some over thirty years ago, before I knew them, and some more recently. I also have had many clients who have MS.

My friends with MS work very hard to live their lives with this dreadful disease, as fully as they can, remaining as active as they can for as long as they can.

The clients who come to my groups are often still searching for their right path, the path which will suit their lives. Some hope to have found it in conductive pedagogy and it is my job to find out how we can fit it all together.

For the people I know with MS, being active, trying to keep their bodies fit, is a way that they have found in which they can best live with the illness.

What suits me

You don’t have to have MS to be in search of a way to lead an active life. Many people want to remain healthy, by checking what and how they eat and by doing exercise programmes.

We all probably know how difficult that is!

During my lifetime I have played tennis, badminton and squash. I have ‘run the world’ twice, and therefore trained for it beforehand, with Bob Geldorf. I have been on Yoga and Qi-gong courses, and learnt how to do self-hypnosis/meditation (Autogenous Training). I have tried ice-skating, roller-blading, hockey, netball, table tennis and volley ball

Some I did not enjoy too much, others I have somehow not been able to fit into my lifestyle for long periods of time. At the time of doing them, though, they were fun and I learnt something that has influenced who I am and what I do. I can still hit a tennis ball around the court with my friends who play regularly, without embarrassment. Those years at grammar school playing on grass have not been for nothing. I still swim and keep up with Dad and his mates, however irregularly I go to the pool.

But I don’t “do sport“.

It doesn’t fit in to my life. I tend to go along with the German saying that “Sport ist Mort!” (sport means death!). This is directed towards those people who do a bit, then do no more for months. Then they wonder why they get injured when taking it up intensely again, for example when the skiing season comes around again.

It is really important for me that I keep fit. I could not do the work that I do if I were not fit. It has always been my philosophy that I should never ask a client to do something that I cannot do myself. This does not just mean just all the movements, it means the whole three to six hours.

It is also important for me to be outside a lot. Since I no longer have a garden this could be difficult.

But it isn’t.

Ever since I was a child I have done one of my soul-feeding “exercises”. As soon as I wake, I go out of the back door. Whatever the weather or time of year, I breath in the fresh air. At seven years of age I took the dog for a swing, more recently I have taken my first cup of tea of the day for a walk around the garden, nowadays on to the balcony. Here I greet the day and test the weather, deciding then what to wear.

Then comes the food-for-my-body-and-soul “exercise” - I get on my bike.

Biking it

Just about every day since I was eleven, when I was given my first “Green Shield Stamp” two-wheeler bike to start grammar school, I ride a bike. This first one was a gold and red Raleigh, and had “cost” sixty-five books of trading stamps.

Luckily there was no white Christmas the year I found that under the tree.

After that came the next Raleigh, a second-hand “Shopper” that saw me through to the end of school. Then came the third, my Mum’s sit-up-and-beg Raleigh that she had bought for herself in 1939. I renovated this lovely bike in 1975 and, to my Mum’s shock and horror, I painted it red!

When I graduated from art school my Mum took me shopping and bought me my first racing bike, my trusty, dusty-pink Pegasus.

This was followed ten years later by a Holdsworth, given to me, just like that, by a teacher at the school where I was working. It had been stuck sadly in a shed for years, not being ridden. The teacher thought that I might enjoy it.

This shiny green steed became the love of my life. We were inseparable. It even went with me to Hungary where it and I eventually came a cropper on the slippery cobbles between the tram lines of Buda. Thank goodness for helmets. Even so I was concussed and off work for three weeks.

At this point I bought one of the very first mountain bikes available in Budapest, an American bike with wheels much too thick to argue with tram lines. I used it in the city and in competitions in the Buda Hills. I even rode it to and round Lake Balaton.

I still have this bike but as it was getting a bit the worse for wear three years ago I replaced it with the new love of my life, another mountain bike, called "Dynamics-Lightning" produced by the company Stadler. I don’t climb hills in races any more, I gave that up with backache in Budapest, but I still have to compete with tram lines. The Holdsworth of the eighties returned to England and was swapped for a series of etchings by my artist friend Nick Ward. I recently saw the bike being ridden around Winterton-on-Sea, on the east Norfolk coast, by a friend of his who had swapped a printing press for it. I now wonder whether right from the beginning money ever exchanged hands to purchase this bike!

As you see exercise really did become part of my life and my bikes became a passion. This was the only way for me to exercise, for it to become a part of my body and soul. I don’t have to think about it a lot. I don’t, as some people do, have to force myself to go for a jog or get down the gym. I cycle, everywhere.

I don’t think about it I just do it. Yes, I do admit that on some cold, wet, windy days it is hard getting out of the door and on to the bike, but that is how I get to work on as many days of the year as is possible. In the winter I sometimes give in, I don’t like cycling on snow any more, I am too old for that now and lack of experience in childhood makes me nervous when it is slippery. Last year with the minus 20°C making my joints painful also put me off. It was a long winter and my bike and I missed each other.

Lives fit for conductive uprbringing

Why am I writing about my passion for cycling, describing now “sport” and keeping fit is part of my and my friends’ lives.

It is because of the following question that I read on Facebook this morning.

"Why do family's that attend CE with their children have such difficulties adapting it into their daily life? To make it a part of "growing up" or into a game?"

I wanted to write something to illustrate why they find it difficult.

It is so difficult to integrate staying fit and healthy into my life, it is difficult for my MS clients to integrate it into their own lives. Think how difficult it is for parents to integrate conductive living into the lives of a whole family. It is very hard for many family members to adopt a certain lifestyle for the sake of just one family-member who has a physical disability.

Parents need to develop a conductive lifestyle on behalf of their child. This is made even more difficult when the child attends conductive groups without their parents, without the rest of the family. It is then more difficult still when the child attends school where no conductor works, perhaps attending physiotherapy, speech therapy, riding, gymnastics, all without a conductor and without parents either.

How can a family be expected to make Conductive Education part of growing up when the only part of the day left is going to bed? Not much time left for a “game” of Conductive Education then.

CE is far from a game

Conductive upbringing is hard work and takes a lot of organising. things when done conductively take a lot of time, time that has to be found somewhere in a family’s day. The time is there, but sometimes help is needed to find it.

Developing a conductive lifestyle needs enthusiasm, it needs understanding and it needs passion. It needs to involve everyone who touches a child’s life. Parents may need a lot of encouragement.

From whom?

I hope that such encouragement comes from conductors.

Conductive upbringing as I learned it in the Petö Institute, mainly in residential groups, is not exactly how I do it now. My vision has been that I want to provide the benefits of what I experienced and what conductors did at that boarding school in Budapest, except that in Budapest they did it without involving the families. My vision is to involve families.

There hasn’t ever been a boarding school for children with motor disorders quite like that anywhere else in the world, as far as I know.

I have seen my job as trying to make home like such a boarding school, to assist the parents and show the whole family how to “do a Dina”. I thought that through doing this perhaps the integrating of conductive pedagogy into the daily family life, creating a conductive life, could be made a bit less difficult.

Don’t ask why not, just do it

Instead of asking why families find it difficult, we should ask ourselves why we may find it difficult to fit “sport” into our lives. We might find some answers there, answers that include words like encouragement, help, understanding, enthusiasm, motivation, hope and feeding the soul.