Adult clients, real collaborators

How group members care for each other, including me

It is strange how time flies past when my work with adults begins.

A three-week block with children appears to me to last at least twice as long as a three-week block with adults. I enjoy both but I wish that the work with adults would last just a little bit longer. No sooner has the camaraderie picked up again and it the time is over again for a while

I love to work with my colleague with the little children who attend our sessions for three weeks at a time, to meet the older children who attend sessions each afternoon after school, and to help them with their lives in mainstream schools, but my favourite work of all is with the adults. I especially enjoy the work with the stroke group, although I now have another favourite string to my bow, with the new group called Fit and Active at an Older-Age.

http://www.susie-mallett.org/2013/03/i-love-my-work.html

http://www.susie-mallett.org/2013/03/more-on-fit-and-active-adults.html

I wonder whether it is because we do not see each other regularly each week that this special camaraderie has developed. I expect that all group members, all in their own special way and for very personal reasons, look forward as much as I do to our intermittent blocks working together.

Taking responsibility

The stroke group has been established since 2002 and has a hard core of members, with one of them still with us from the very beginning. They are all active and it is their active work that often attracts new members who they then encourage and help integrate into the group. They all feel responsible for each other’s full participation and the development of everybody’s skills, including social skills.

A new group member, a new colleague...

...well sort of

I am really lucky to have a former colleague working with me once again after a five year break in the adults’ groups. I just love having him there; he brings a relaxed atmosphere in the group with him. We had worked together for years previously and developed a wonderful working relationship. We do not really have to discuss much as we work, we just know what the other one is doing, and we both know what all the clients are doing and need. We swap ideas and help each other, and the clients, carry them through in action.

Our clients love this atmosphere too as they know that things will run smoothly throughout the sessions.

Personality traits

Of course there are always clients who prefer to be with one conductor or another. We will all have experienced that in our lives, and not only with children. Adults often show preferences too. It could be a personality thing. It could be how we help, how we touch people, how we speak to them or our actual physical strength.

The big chap in the group feels safer when walking through the ladder in the middle of the room with my male colleague beside him. I always put the ladder beside the parallel bars when I work with him alone so he feels just as safe, he walks in the direction so he can grab the bars if necessary. 

Now that I have a colleague again who is stronger than me we all prefer it that he walks alongside the ladder with the clients.

One lady may prefer the fine-tuned finger-tip help of a quiet experienced conductor, while other clients might prefer the smiley personality of another, but perhaps less experienced, conductor.

We switch and swap so that no one gets too attached and everyone gains lots of experience, conductors and clients alike.

I like working with all these people, the conductors and the clients, and I love to observe how we all learn and progress, and how it all comes together like cogs in a well oiled piece of machinery.

Oiling cogs

Oiling the cogs takes place at the hands of all members of the team and last week it was one of the old-time clients who got on with some very necessary and quite tricky oiling.

There is a newish member in the group. He lives in a sheltered community, in a care home, whereas the rest of the group live at home with their families. He has lived in the care home for over ten years, since suffering a stroke when he was in his late thirties.  Two other group members are in their sixties, one has children and lots of grand-children and has an active social life, and the other enjoys travelling with her retired husband and participating in musical and carnival events with him. A younger member of the group has a young family, one of the children born since he suffered the stroke. All these factors are important in the changes and transformations that take place in these clients’ lives, in their personalities and relationships with others, both before they took part in conductive living and since.

Their ability to communicate and the expectations put upon them from others to participate in life differ, and of course change as their various social and physical skills develop.

It was in this context that last week I experienced something that made me smile inside.

One of the group who ten years ago could not string more than two words together in her native tongue (in English, a foreign language, it was a little bit easier) mentioned to the newest group member, the one who lives in the care community, that he did not smile very much in fact hardly at all. I remember her telling me the story years ago about when the smile came back into her life, when she realised that it had been missing and decided to live each day as it came, and to the full. She put a smile back in her soul with help from her husband.

She asked this man why he did not smile. He was forthright, explaining that he had consciously given it up years before, directly after he had suffered a stroke, at the time when the smile seemed to disappear from his life. The lady explained how important it had been for her to be influenced by her husband’s philosophy in life of finding a way to do their best, to put on a cheery smile as often as possible, and to make the most of their new lifestyle. The rest of the group, those with families at home, added their nods of agreement.

In the event, during that day’s session they all received smiles on more than one occasion from the younger man.  He is the one member of the group who does not live with his family and therefore does not have people rooting for him in quite the same loving way as the others do. He has no wife or children or grandchildren beside him, motivating and encouraging him constantly to reach new goals or to smile. This conductive group are his motivating force and it is they who got him to smile again.

During the three hours twice weekly that this group is together they often interact with each other like a family unit, each with their own jobs to do, their own supporting roles to play, their own acts of encouragement, their own highs and lows, just as it is within a family. And it usually all goes on without words, without spoken agreements, in much the same way actually as the work with my new-but-old colleague.

Finding the words in a difficult situation

As the session progressed on the day in question the older lady, who can now string together long sentences and hold interesting conversations, explained her more complicated thoughts about what she thought was happening in the group, and she soon became much bolder in her observations. I was amazed at her ever developing ability to express herself. She was able to translate her thoughts into words and directed them towards the newer group member, with the rest of the group spontaneously offering in turn their support to both of them. I was actually quite shocked by what I heard – but at the same time very moved.

More than a client

It was such a strange situation for me to be in. I was receiving the kind of support from a client that I would normally expect from a fellow conductor.

‘Why do you only complain about your aches and pains and your fears when Susie is standing beside you, and not when a male conductor is there?’ asked the lady.

For myself, I did not at first know what to say, but I soon pulled myself together and thanked the lady for thinking about this and being brave enough to ask. I had actually been struggling to find a balance between encouraging this client to be active and try new things and actually moving away from him and giving him a break when he became quite tetchy. The man who had been asked the question took a bit longer to react, he too I think was shocked and needed time to reflect on what was going on. 

The other group members had time to pass their own remarks before he eventually said that it is because I am small and he is more fearful when I am there with him. The lady replied that there was also a very tall and strong young man (not a conductor) who was helping him and that she suspected it was nothing to do with that at all. We all agreed that she was probably right and the atmosphere improved enormously.

Time to question the word “client”

I have happily used the word client for a long time, I do not like the word participate. As my clients and their groups develop so do our relationships with each other and the word client no longer seems enough.

The members of the group are there alongside me not as fellow conductors but as fellow human beings engaged upon common tasks.

I am no spring chicken but I am younger and less worldly than some of my adult “clients”.

As they begin to master their motor disorders and the social disruptions that these cause then these mature people emerge again in their own right and we really begin to work as a “team” developing alongside each other, every one of us with a contribution to make.

Acknowledgements

One of the clients who attends this group, one of its founding members, has long since come to the conclusion that it is time to question the words that we use to describe the people we work with.

She addressed this in the book that she wrote, “It came like a bolt from the blue”, a book in which she describes the establishment of her conductive lifestyle.

Having thanked several people for the roles that they play in her life she wrote –

“I also wish to say thank you to conductor Susie Mallett. With her I have learnt how to be happy again and how to do things. In the conductive group I have become an active person again (not seen as an object). Susie has become a very close friend to me.”

Notes

It came like a bolt from the blue, A post-stroke story in words and pictures by Waltraud Heußinger – edited and published by Susie Mallett, Conductor, Nürnberg

Life and brains

Sometimes I just want to share things that I come across with a larger audience. Here are a couple of today’s examples.

This morning when I read my daily notice from Dean’s stroke musings I found this –

http://www.npr.org/blogs/krulwich/2013/04/04/176258637/monty-pythons-john-cleese-almost-explains-our-brains?sc=emaf

This seemed to link in quite nicely to my recent posting about neurology in a fun, British humour, sort of way.

This evening something very different came into my inbox from one of the blogs that I follow, These Broken Vases, again I thought that it would be nice to share it as it just seemed to fit into life in general –

http://www.thesebrokenvases.com/2013/04/when-blogging-blew-me-away.html

http://www.ellenstumbo.com/special-needs-parents-i-see-you/

'Having a finger to squeeze is sometimes not enough'
But for Oli it is!
Here Grauntie Susie supplies the helping finger for Oli  in the middle of the local village Easter fete, April  2013

Conductors, our present services and what more we might offer

I have written before about the importance of discussing with potential clients what they need and what services I am able to offer them.

If I am able offer them the service that they are after I will do so, if not I will try to find someone who can.

I have met so many parents who rarely go out without their disabled children, or at all, because of difficulties in finding people willing and able to babysit. Oh, how I wish that I had could have passed some of these on to someone like Natalie Sanchez who is now offering a service that from my experience is very much needed everywhere. I expect that it will be welcomed with open arms in the region where she lives. She has a new website where she offers ‘Special needs babysitting’ –

 http://nataliesanchez.co.uk/

I have recently been thinking about how conductors could fill another gaping hole in services provided, not only for people with a disability, but also the elderly and also those recovering from operations or illnesses, or returning home after long spells in hospital.

I see an opening for a service that could perhaps be described as ‘conductive living’, as opposed to Natalie’s wonderful concept of special-needs, or conductive, baby-sitting.

A conductor could ‘live’ for a few hours a week in the home of for example a post-stroke patient, or a post-carpal tunnel operation patient, or someone newly bereaved  and suddenly living alone. The conductor could be the one who helps to bring sparkle back into lives, the one who motivates activities by saying – ‘Come on, don’t you think it is time to start doing the ironing again?’, or ‘How about trying to bake your favourite cake today?’ or ‘Should we get out in the garden and get the bed dug for the chrysanthemum cuttings?’

With so much talk about cuts in welfare services there seems to me to be a potential market opening up, especially in the UK for something along these line.

I for one will be thinking about working along these lines when I am too old and creaky to crawl around on my hands and knees after three-year-olds.

More brain…

 …it gets everywhere these days

An Italian pasta forest

Making music - The Grand Old Duke of York with Great -granddad, Great Auntie and Aimee  

Deciding which look tastiest

‘Almost 2500 years since Hippocrates first saw the brain as the centre of our thoughts, we can now interrogate its inner world with some of the most advanced technology known to humanity. The ultimate aim is to work out how the brain generates our conscious mind. Such understanding is a long way off.’

The puzzling problem of binding

I have found yet another ‘brain’ article, this time in New Scientist of 6 April 2013, perfect reading matter for my three-hour train journey.

Without a doubt, as I read further in this very well written piece, I knew that the paragraph that I was waiting for would appear.

What made me so sure?

I was sure because the article was full of the words and phrases that repeatedly reinforced what I have heard spoken from the mouths of several research neurologists, and read in well informed articles like this one.

‘Is the mind beyond human understanding?’

This is the question that begins this list of phrases that read and noted down as I read about the brain in the New Scientist –

·         Is the mind beyond human understanding?

·         ...according to one theory

·         ... it could be

·         ...many neuroscientists believe

·         ... some neuroscientists claim

·          ...according to this view

·         ...elusive phenomenon

·         ... impossible to specify

·         ...it has also been suggested

·         ... the idea is controversial

·         ... a potential breakthrough may lie

·         ...no one has been able to work out how

·         ...recent reports suggest

·         ... may be possible

·         ...which is thought to explain...

And just as I thought, at the end of the page I read –

‘As we have seen, different tasks are carried out by different cortical regions. Yet all you have to do is open your eyes to see that these tasks are combined smoothly: depth, shape, colour, and motion all merge into a 3D image of the scene. Objects are recognised with no awareness of the fragmented nature of the brain’s efforts. Precisely how this is achieved remains a puzzle. It is called the “problem of binding” and is one of the questions that remain to be answered by tomorrow’s neuroscientists.’

Is this “problem of binding” the spiralling upwards that I often discuss in my writing, that coming together of many things that are developing in our whole selves, influencing our development, and creating a spiral of progress towards our personal goals in our active lives?

As a conductor I know that by helping my clients learn to develop in many areas of their lives, by helping them to learn to take an active part in society and helping them learn to keep body and soul happy and healthy, that this will result in a so-called ‘merging together of the scene’, what I call a spiralling upwards. I am happy to work hard with my clients to achieve this upward spiralling and I am just as happy to leave the neuroscientists of tomorrow to continue the 2500 year-old quest of trying to solve the puzzles of the brain. 

Notes

New Scientist, 6 April 2013 ­– The Human Brain, Michael O’Shea

What a funny world of languages

A Lego programme

‘Frau P, can I do the Lego programme today?’

That was the greeting my colleague received every morning last week from the oldest child in our conductive Kindergarten group.

He meant that he wanted to lead the lying programme.

He had been invited to have a go a few days before so that he could experience what it was like to have to speak at the same time as a child who just never leaves off chattering, a child just like he is. My colleague swapped places with him and she pretended to be the chattering child. He did very well and had been pleading ever since to lead the ‘Lego programme’!

An explanation is needed

But I do not know where to begin.

Do I explain first where the word Lego comes from, or do I describe the variety in the life in our group with its so many languages and funny accents?

Let me begin with the languages

Russian, French, Arabic, Turkish, German, Spanish, Greek, English and Hungarian. Take your pick – there is at least one person in the group who will converse with you no matter which of these languages you choose. 

Even if you decide to speak German with a strange accent, like I do, the children won’t mind, in fact most of them will have one too and the others will have great fun copying you.

When these children began Kindergarten those with no native German speaker as a parent would probably have had little to no exposure to the German language. Those with one German parent are usually fluent in German and perhaps also in a second language.

Most of those children whose first language could be Russian, French, Arabic, Turkish, German, Spanish, Greek or Hungarian, pick up German very quickly while playing with their friends all day long in Kindergarten.

Even so, as they get older they all attend German-language classes during their pre-school year to get them up to scratch so that reading-, writing-, and arithmetic-learning does not come any harder than to their German peers.

This is just what the little Turkish boy who wanted to lead the Lego/lying programme has been doing for over a year now. He has blossomed since his language classes began. He has developed such good skills with the German language that we are at last able to experience his wonderful sense of humour at last. We are also able to experience his never-ending chatter.

That brings us back to why he was offered the opportunity to try to lead the lying programme while a conductor pretending to be a child was chattering continuously.

He loved leading the Lego Programme

The lying programme in German is the Liegeprogramm. The German word Liege sounds like ‘Lee-ge’.

Lego in German is pronounced ‘Ley go’.

These two different words sound very similar to a seven-year-old Turkish boy whose bedroom floor is cover with Lego bricks! So, just as I swapped csipő (hips) for cipő (shoes) throughout my first Hungarian lying programme exam, this child replaced Liege for Lego, and I doubt, just like for a while in that spina bifida group in the Pető Institute long ago, it will ever be the quite same again!

I think that these children with different mother tongues do amazingly well. There is also a Columbian, an Iraqi and another Hungarian in the larger Kindergarten group but the rest of the fifteen children there are German and there are native German-speaking staff-members.

All the children have ample opportunities to hear Germans speak German in our integrated Kindergarten.

I often wonder whether we are an integrated Kindergarten because we have children with and without motor disorders or because we have so many different languages and cultures amongst us.

When these children come to the three-week long Pető sessions it is more difficult for them to develop their language skills and we have a lot of fun while discovering about the different foods that children bring with them for breakfast, and from learning new words and from teasing each other about our strange pronunciations.

Parlez vous Français?

We all now sing Frère Jacques in four different languages. I learnt this song as a child in French not English and this is always my first choice of language when I sing it. Later I learnt it at the Pető Institute in Hungarian and at the same time, also from the Hungarians, I learnt it in English. Now we all sing it together in German.

One day while working in this same group I was singing along in my Norfolk-accented French when I heard someone singing along with me. It was a four-year-old boy, the newest member of the group, whose father from Cameroon speaks French at home.

But just wait a minute!

That was not French that I was hearing, it was German, but it sounded just like the words that I was singing. The rhythm was the same the melody of the voice was the same but something was not quite right.

We all eagerly requested a solo performance and we discovered that this is how it went in French-German –

‘Schwere Sache, Schwere Sache, dorme du?’

That is just about German and means —

‘Difficult things, difficult things, do you sleep?’

The child who sang this solo speaks German almost exclusively but his father speaks to him in French. He understands his Dad but responds in German. It is almost that he refuses to speak in French, as was the case in this song.

Tuning in our ears

So in our multi-cultural Pető group we take part in Lego programmes, usually without the bricks and sing about Difficult Things instead of Brother John. We also have a great deal of fun and what outsiders think when they first hear us all, goodness knows! I hope that it is as funny for their ears as it is for our own.

Conductors who have moved from other countries to train to be conductors or to work in their trade will know and understand the problems that the children in this particular integrated conductive Kindergarten are up against.

Most clients outside of Hungary who are receiving a conductive education and upbringing from conductors will have experienced their mother tongue being spoken in a foreign accent. It always amazes me how well these children do. They seem to understand almost through osmosis what to do, just as I am convinced that this is how I first functioned when I began my training at the PAI.

How foreign is foreign?

I often tell the story about one of my very few early experiences of working conductively in English. It was with twin four-year-old Polish boys in Canada who had, in their short lives, mostly experienced the English language as spoken by Hungarian conductors. It was quite obvious at the start of our work that they did not understand my Norfolk-English. They thought that I was really foreign although I had actually felt so at home over there in that part of the British Commonwealth.

Conductive terminology in foreign!

What to call what? That is something that crops up less often these days as a theme for discussion. As conductive work becomes established in different countries words for what we do, what we use and what we wish to describe become established within the conductive community. We often forget that they are not understood outside our conductive worlds.

Recently I was spontaneously asked to speak in English about the up and coming World Congress for Conductive Education, for a voice-over on a film. This happened in Germany. No problem one might assume for an English native speaker. My Hungarian colleagues all thought so too, but it was a huge problem for me. I had no idea where to begin I did not know what people say in English. Yes, perhaps I am a native English-speaker, but not one who has spoken about conductive upbringing using the English terminology that I required now. I declined that spontaneous request!

The different languages and cultures in my life

I would really miss the multi-culture in my conductive lifestyle if I only worked and lived only in my native Englishness.

I know that my work would be very different if I were not English but it would also be very different again if I was not influenced by so many other cultures and languages. I hope that the lives of our littlies in Kindergarten are enriched from the integration of cultures just as they are enriched by their integration with children with, and without, motor disorders.