Twenty years in Nürnberg - celebrations are tomorrow

A conductive upbringing

Little Princess

Some families just do it.   

Little Princess and her family are so motivated that they just have a go at anything that comes their way. Little Princess is included in everything and she also initiates many actions herself.

A few days before the weekend of the Blue Night in Nürnberg when museums and galleries open their doors late into the night and when many new creative projects take place, all that was needed was to suggest in hearing distance of Little Princess we all meet in the city at some point during the evening.

Little Princess was immediately tuned in and the following day had everything sorted out. All that we were relying on was the weather to play along.

It was a dull rainy day on the Saturday in question but at the last minute, well into the evening the weather cleared and I received a message on my phone from Little Princess informing me that she, her brother and their French exchange guest and her mum were about to leave their house. I had a ten minute walk to town so I slowly made by way to our meeting place.

We enjoyed a couple of hours amongst the crowds before returning home to our beds just before midnight.

I was so impressed with the way that Little Princess whizzed amongst the crowds in her wheelchair, her head at elbow height, without a care in the world. She was thoroughly enjoying her very first Blue Night experience. I hope we share many more Blue Nights and other such events in the future because I always find Little Princess’s presence so inspiring.

Memories and inspirations

Patchwork tapestry from 1986, Caroline's piece is top right

I spent my Easter break in Norfolk with my Dad then on the last weekend I travelled north-westwards, not too far from home, to Cambridgeshire. This part of the country is so near to home but somehow I felt like I was in foreign country during the few days that I stayed there.

In places it is just as flat as Norfolk, if not flatter, and there seems to be more open space and more sky, and it seemed in a way more rural, more oldie worldie and more touristy. There are however rises in the countryside that enables one to see even further than in Norfolk, with views across farmland and yellow stone villages.  

Not only did I feel that I was in a different country but I felt like I was stepping back in time too.

This was because the reason that I was in Cambridgeshire was to join the family of a client of mine from thirty years ago. This client had died just before Christmas and the Memorial Service that I attended to celebrating her life was planned to coincide with what would have been her fifty-seventh birthday. She was the same age as me and perhaps this is why we had got on so well. 

I had kept in touch with but not met the family in all the years since 1987 when I had left my work as an art therapist and art teacher at the place where my client had lived.

I felt so at home and so at ease with all the people whom I met at the service and especially with the people who were there from the home where my client had lived for all those years since I had worked there. What surprised me most was that Caroline’s friends remembered me, and that their carer, who had as a fourteen-year-old been helping out in the 1980s doing a Duke of Edinburgh’s Award, remembered me too. We had a great time looking through the album of photos that I had compiled for the family and reminiscing about those happy times thirty years ago.

It was while I was working in the amazing art and craft studio, that I describe below in the piece that I wrote for the Memorial Service, that I first discovered Conductive Education.

1987 had been the year that the first Birmingham trainee conductors began their training. In the previous years while I had been working at that wonderful arts centre the British papers had been full of the Pető Institute and its work, about pressure groups set up in the UK and with reports about British families travelling with their children to attend groups in Budapest. I had been really inspired by what I had read about Conductive Education and knew that this was what I would like to do. I was excited when I saw an advert in the Tuesday Guardian’s education supplement for trainee conductors and had been motivated to apply, although I knew that I did not have the qualifications that they required.  

I sent off the application anyway but was to be disappointed as I had not worked in a state school so was not yet a fully qualified teacher, and I had no music experience, which at that time had been another of the criteria for the training. Two years later, having worked in a state school for a year, I re-applied I was accepted, and my conductive life begun. But I shall never forget the experience of working in that lovely centre with my client from Cambridgeshire and her friends, and my lovely arty colleagues. I learnt so much during that time and I am sure that it was because of this experience that I was so open to everything that I saw and learnt in Budapest. I soaked it all up like a sponge.

It was with thanks for having been able to take part in this inspiring work that I participated in the celebration of Caroline’s life. Everyone said what wonderful work my colleagues and I did there but it was I who had been motivated and inspired by my clients, so motivated that I sadly chose to leave them and to become a conductor. I thank them for their part in my life at that time and I thank them also for the welcome back into their lives on that windy Sunday afternoon just a few weeks ago.

A step down Memory Lane

 My speech given at Caroline's Memorial Service on April 12, 2015

I met Caroline thirty years ago her home in Bedfordshire where she was a member of the group of very creative artists whom I had the pleasure to work with. We worked in the arts and crafts workshop that Sue F, Geoff B and I ran almost along the lines of an art school! Caroline and her friends excelled in this creative atmosphere.

We worked with a music therapist, an art therapist, the farm workers and further education teachers, as a huge, happy and creative family of which Caroline loved to be a part. 

Caroline and I were friends from the start, we were the same age and we soon discovered that we had something very special in common. We both had a Mum who sent us two or three postcards every week, sharing details with us of life at home! Homes that both of us loved and often missed.

I loved receiving my Mum’s cards, and I still have them all, so I knew how precious Caroline’s were to her. I used to leave mine on my kitchen table for a few days before finding them a spot on the wall, but Caroline always carried her postcards with her in her skirt pocket where they stayed until the next one arrived. Everyone she met during the day could read them to her and it was in this way that I got to know her family. I learnt about new-born babies, brothers and sisters, and lots about Dad and John and the comings and goings on the farm. 

Reading about her family on her cards also enabled me to understand Caroline’s beautiful drawings and tapestries that almost always depicted home and family members.

Caroline's tapestry of home with family and Mum's green house, 1986

Before long I began to take my postcards from my Mum to share with Caroline and the rest of the group. 

It was quite some time, and many postcards later, before I met any of Caroline’s family in the flesh!

 

Caroline's Mum

Sue, Geoff and I encouraged our ‘arty students’ to produce a huge range of creative work for which we soon realised we needed an outlet. It was at our first exhibition in our workshop that I eventually met Caroline’s Mum and Dad. They must have wondered why I felt that I knew them so well!

Frank Ifield in his gallery in Bedfordshire

Eventually we were very lucky to be given the use of a local art gallery, owned by Frank Ifield and the private views were a highlight for Caroline and friends. We sold many of the works of art and from the proceeds we were able to take the ‘artists’ out for treats. I remember  joyful occasions when Sue Feast and I took Caroline, and her friends Becky and Diane, for cream teas in Ampthill and another time when we travelled further afield to an art festival where Caroline and I had such fun together at an origami workshop. 

Whatever we were doing Caroline was always there joining in and having fun with often her main aim being to make us all laugh as much as possible.

Caroline was always great fun to be with, everyone loved her and her wonderful sense of humour.

Caroline dressing up

I am so glad that Caroline always kept in touch. She did so with Christmas cards, at first with help from her Mum and later from her sister, Elizabeth. 

When Elizabeth wrote to tell me the sad news of Caroline’s death I was reading a book of nature stories by Mark Cocker and one of his stories brought memories flooding back of the detailed descriptions of farm-life that I read aloud to Caroline from her Mother’s postcards.

As none of Caroline’s postcard-stories exist today I would like to close with an extract from that story I was reading, a story that coincidentally mentions butterflies, which Elizabeth tells me were one of Caroline’s passions, after Dr Who.  Amongst these butterflies flew a solitary, velvety, purple peacock. I know that now, whenever I spot one, I will always be reminded of Caroline.

19 May 2008

Wheatacre, Norfolk

The sudden flush of heat across East Anglia has set the farm fields racing skywards, and on the southern edge of the Waveney floodplain the world has divided into just two colours, the green spiring up and the blue pressing down. Yet one colour has also bled into its neighbour. The cow pastures at Wheatacre are made up largely of a flowering grass, rather oddly named ‘Timothy’, and there is a faintly bluish tone to each separate inflorescence of this species. When reviewed in aggregate across the flats, the fields of Timothy made it seem as if that ozone blue had somehow come down to Earth, secreting itself among the vegetation.

Over this shining green-blue landscape, which rippled gently in a cold westerly, butterflies struggled against the breeze. They were mainly whites but every now and then a peacock sallied across the grass canopy as a scrap of plush purple velvet.

Mark Cocker

Caroline and her Mother

Me and my sister.

Judit turns up trumps again

Afternoon tea at the Royal Albert Hall

What a wonderful introduction to travel and the big wide world for one of my long-term conductive upbringing clients. 

https://juditszathmary.wordpress.com/2015/04/20/english-summer-adventure-2015/

Thank you so much Judit!

Notes

I previously mentioned this story at –

http://www.susie-mallett.org/2015/02/little-princess-loves-stories.html

Conductive upbringing thirteen years on, and a bit more on saying No

I looked through my blog recently and decided to re-publish this post below as I enjoyed it so much –

 

These are all new experiences that have been built into the conductive programme to be worked on this last week

• Surfing the net
• Booking tickets on-line
• Reading up on the Net about possibilities for museum visits
• Remembering pin-numbers and learning how to use a bank card, in a machine and in the shops
• Travelling together by bus
• Travelling alone by bus
• Using mobile phone to organise lift home from bus stop
• Arriving home in one piece
• Taking own shoes with splints to be altered
• Ordering food and eating it in a restaurant
• Going to the theatre

There is still the old list. The list that contains all the things to practise until they can be done alone

• Vacuum-cleaning
• Preparing lunch
• Shopping
• Tying shoes
• Taking medicine and tablets with no help
• Mixing paints

Then there is the list to practise every day because it is a part of life

• Clearing and preparing the table
• Filling and emptying the dishwasher
• Tidying and cleaning the bedroom
• Drinking quietly
• Getting ready for work alone
• Walking five kilometres, not every day but sometimes
• Painting
• Sweeping the workshop
• Talking to people in the street

In the bag? It all depends on the mood!

The last list is a list of experiences that are all in the bag, but actually doing some of them is still dependent on Lust und Laune, being in the right mood and frame of mind.

It is difficult growing up in a family with four children who are all expected to do their bit, the bit each one is capable of at the age they currently are; the bits that keep their everyday family life running smoothly.

The client for whom the lists above were written spent most of his childhood not being able to do much to assist in the smooth running of family life, except to look after himself. He learnt to wash and dress completely alone and to eat and drink. He can spread and cut, and mix and stir. He can climb the two flights of stairs alone and many other things. His contribution to the family life for many years was being as independent as he could be freeing up other family members’s time for other things.

Over the last few years things have been changing, he is capable of more and more. And now that he is more able it is incredibly difficult for him to adjust to having to do things for the rest of the family and not just for himself.

As soon as his siblings realised that their brother could walk and at the same time carry things safely, even put things in and out of the dishwasher, that was it. He was roped into the evening ritual that the rest of the children had of preparing the Abendbrot and clearing away afterwards.

Teenage squabbles

Not only was their Brother part of the helping household, he was also part of the accompanying ritual of arguing about whose turn it was.

It is wonderful to hear one of the best things that I can imagine experiencing in my work within a family – siblings arguing. I mean all of them arguing, including the one with a movement disorder and a speech disorder too!

It can get very loud!

I recently heard, from a floor below, the younger sister really having a go at her disabled brother. He thought that because he had just finished work he was exempt from helping in the kitchen. Sister had only just got home from school so she wasn’t having any of it. She knows as well as anyone what her brother is capable of and they argue about it just like in any other family. He always helps in the end but only after resisting for a while. His help is needed more than ever these days as there are only the two siblings at home during the week and they have to share the work between them.

Tough love

Little Sis is tough. But not always. She is the sister who would creep into her brother’s bedroom when they were younger and secretly help him to put on his socks. She always told us that he had done it alone, but we knew and we turned a blind eye to this sisterly love!

This Little Sis wasn’t always there when he “needed” her so he often had to do it himself, and therefore he learnt despite the sneaky help! As a child she would stand up for him and defend him if he had been naughty. But now she is a teenager and the one sibling at home with him all week and she is really tough.

It is the twin brother who now as a young adult helps with showering and dressing when help is needed. They have a special kind of relationship, not so much a saying No with these two, more a saying "Yes, you can do it, if you try hard enough".

It is interesting to observe how relationships change in this big family. The behaviour of these teenage and adult siblings of this motor-disabled young adult is different to their behaviour when they were children. As they become more and more independent themselves, they expect their disabled brother to become so too. They take on part of the role of their parents and also of teacher. Sometimes even protector.

It is even more interesting to observe this when it is happening in a family where all siblings have been involved in a conductive family life as children, and its still going on now even as they become young adults.

Sibling experiences

I have been told by the twenty-one year old big sister that as a child she didn’t really take much notice of the comings and goings of her Mum, younger sister and brother when they went on ‘therapy trips’.  Of course she missed her Mum while they were all away on the various trips that they made, but she was usually happy to be at home with the rest of her extended family, going to school and carrying on with the daily routine. Nothing much changed for her, not as it did for Little Sis who always had to go along with Mum.

As a teenager and young adult Big Sis became more involved in the life of her brother.

Big Sis tries to give her 20 year-old brother some of those teenage experiences that he would otherwise have missed. Physically he is now able to join in more activities than he was even five years ago, so he is trying to catch up fast.

Big Sis does a good job she takes him places that a nineteen year old doesn’t wish to be taken to by a parent and does things that are hard for the twin brother to do.

Of course the twin brother could physically do them but psychologically it is very difficult for him, so Big Sis does as much as she can to make a social life possible.

They go to parties together with her crowd of friends; they have days out with the same group at the lake. And you know what she finds most difficult on these trips? Not looking out for her brother so much as dealing with the reactions of friends and strangers who they meet.

Sometimes her motor-disabled brother over-estimates his capabilities, often he just wants to have a go and decides for himself that he is very able. He has been brought up to believe in himself and to have a go but he often takes on too much. He knows that when he is out with his sister not everything is allowed. Sis does not want to have the responsibility of something going wrong. Some activities are just not allowed and she makes that quite clear.

I was told the story of the day that her brother disappeared and was spotted out on the lake in a paddle-boat without a lifejacket!

When things like this happen she is angry, brother understands and apologises and promises never to do it again (till next time!).

What she finds difficult in this situation is not being tough on her brother. He was, I suspect knowing him well, expecting it even as he sat out on the lake in his paddle-boat, proving to himself that he could do it alone. It is the reaction of her friends and of the strangers looking on that is so hard for her.

She thinks that they feel that a teenager with motor disorders should not be reprimanded, should not learn what is allowed and what is not, should not hear the word No, should not learn that Big Sis is not prepared to take quite as much responsibility as her parents do.

Big Sis thinks that the onlookers are being very critical of her and she wonders what it must have been like for her parents when they were all young children. All four children were treated exactly the same, I know this to be so, as I witnessed it. There were probably many strangers, and not-so-strangers, with their critical looks and even comments.

Big Sis follows her parent’s example, she doesn’t let anything go. If No needs to be said, she says it but it is nevertheless hard when she sees onlookers shaking their heads.

Transformation

Children grow up, even those with a motor disorder. Over the past five years I have been asked to work in several centres to advise on the opening of adults' groups, as suddenly the very first ‘Pető’ children have became adults.

In a conductive upbringing at home this is not such a sudden realisation, especially when there is a house-full of children. All grow together. Activities change and the routines change. Roles get swapped and new skills are learnt. Sometimes old ones are lost. When the end of playing on the floor with heaps of Lego comes, it is so often also the end of  the skills that go with it – being able to move around on the floor, standing up and crouching down also often get less practice and therefore becomes difficult.

When games are no longer played there is the danger that fine-motor skills will cease to develop. It depends on what takes their place. Toys are not around anymore, but there is always the razor and the deodorant, the lap-top and the mobile phone to deal with. Cooking lunch, baking cakes, vacuuming and washing up, playing kicker and snooker are the new activities.

As the conductive upbringing continues into adulthood it gradually transforms into the clients' conductive way of life. Different people take on different roles, carers and siblings begin to take on the roles that the parents had. As for all young adults, parents should naturally be taking a less prominent role in the lives of their disabled children. Sometimes this happens, as in the family that I am describing, very often it does not, or cannot. There are not always the people available to take over the role of the parents, or it is also often not what the family wants.

It is always hard to stand back and let adult children go their own way but when one of those children has still so much to learn before being independent it is much, much harder. Because then it often means handing over or sharing the role of upbringer with someone else, just like on that first day at Kindergarten.