Tuesday, 30 November 2010

More thoughts from Würzburg and beyond

"The pond by the café where I write many-a-posting"
November 2010

The future

Since I have a colleague I worry less and less about the future of the conductive work that I have developed over the past seventeen years here in Germany. Am sure she will do her best to continue developing the centre here conductively in her own particular way with her own brand of conductive upbringing.

I have more concerns about the future of my young clients, especially when I see that they are so concerned about this themselves. They worry about the future to and from a very young age.

At the Würzburg congress we heard the voices of two teenagers. Who have lived a conductive life since they were three years old.

How approaching adulthood they spoke about their own concerns, which reflect the concerns of many of their peer group.

Both of these young people described with enthusiasm their conductive lives. They talked about their hopes and successes and achievements that they believed would not have been possible without a conductive upbringing.

There came a point in their talks when I got the impression that the hope, that one hears about so often in a conductive family, became dulled. Not gone but the outlook for them did not look as positive as it had down at the beginning of their conductive upbringing.

There was a bit of the feeling of despondency as to what they would be able to do in their adult life.

The one talked about all the places that she had visited where she could possibly live as a young adult. Places that use lifts and hoists so that the opportunity for her to get onto her feet each day would be taken away. For this young lady the prospect of not being physically active took priority over the type of work she would be able to do.

A young man spoke about the bleak prospects for him as a disabled person finding work on the open market despite his conductive, active life.

What was most distressing for me as a part of their audience to hear was that like many of my own clients their main concern for their futures was at an everyday level.

They only knew conductive living. Being as active as possible, being as independent as possible, and taking part in life.

What was on offer to them when school was finished, for one not much that did not include the use of lifts and hoists and physical inactivity, although at the moment she assisted to climb the stairs on her own two feet to bed!

Conductive centres are often too small to offer what these young people need. Perhaps that need will be someone to assist them in university studies, the opportunity to live in a shared flat with non- disabled people, the opportunity to work on the open market, a place to live away from home where freedom of movement is not removed because of the numerous health and safety rules.

I had many thoughts about our young people while at the Würzburg Congress. I was reminded once again of our responsibility always to be looking further ahead. not to next week or to next year but to the next ten or twenty years.

We must always be aware of the need in a conductive centre, or as a private conductor, to consider what we must provide when a seven-year old is seventeen and also much later is twenty-seven and fifty seven. A conductive lifestyle can not be allowed to come to an end just because the client can not carry it on totally alone, without assitance.

Last Friday afternoon

The youngsters should go home at 16.30, but now that they are learning to go home alone, they tend to hang around a bit, especially when there is something else going on that interests them.

We have organised the Friday afternoon children’s group so that we always do something arty crafty at the end. This means that the young adult who comes to me after work can join in creating and then continue his session when they have left.

This works really well and as usual the children love having young adults joining in their activities.

Last Friday Little Princess did not want to go home. She was all dressed up, blinky lights on the rolator switched on, and thick winter jacket zipped up to the chin with reflector waistcoat over the top, but she stayed and stayed and stayed. She waited around just watching what I was doing with my young adult client so long that I had to phone her grandmother to say that she was safe, she just did not want to go home yet.

My new colleague was there too waiting to open the doors for Littlie. Littlie was toointerested by my work to leave and both Évi and I were too fascinated by the scene to bring it to an end.

It is rare to have a seven-year old who walks home alone after a session with us, but to have one in our midst who does not want to leave, well for me that really is really something specially. Not a first as the little boys in Norway never wanted to go home either all intent on dinosaur building, but that is another story already told. This story is about something different, it was not painting and modeling that was keeping Littlies with us so late, she was wide eyed and taking in everything as she stood watching.

In the end I had to send her away as Évi, my colleague, wanted to go home too.

Afterwards Évi sent me as email message asking me what I thought had been happening with our Littlie as she watched in fascination my work with adults.

We had both been wondering the same thing. Was it just fun to be there, something different to see, or was she thinking about her life in the future?

I think it was a bit of both but more of the last.

I really do hope that before this and the other littlies get much older we will have developed all manner of provision for them to ease their fight to reach high school and university. Maybe we can prevent Littlie and her peers from worrying and thinking: “What is going to happen to me in the future?”

Monday, 29 November 2010

A jolly story for a grey, snowy and getting very slushy, day



I sent the two pictures that head this blog home to my family. I do this sometimes so that my Dad can see what I get up to at work. He can see that despite the hard work it is also a lot of fun!

As I related what had been going on, told the story behind the pictures I realised it is quite a jolly story, something to be posted here.

For many years now, I think it all started when Laddo was about seven and I was forty, I have asked my young and no longer quite so young clients, while they are lying down how old they are. Once they have replied I suggest that this is the number of times they could sit up from lying, touch their toes and lie flat on their backs again using whatever assistance they need to do this.

It never takes them long before they ask, just as Laddo asked so long ago now:

“And how old are you?”

It has become tradition now when I work with Laddo, that since he can do his sitting up and toe touching alone I try to do mine at the same time as he does his. I try desperately hard to finish before he does. Sometimes he is laughing so much he makes it very easy for me mostly these days it is a dead heat. I wonder how long it will be before he takes over the championship!

I am still managing to come in first, but it is getting to be a close call the fitter he gets and the older I get!

Since I have been working with the school children they rise to the same challenge. But they caught on quite quickly to another trick. When I ask them how old they are they have started to answer one year old or three-years old, the age they choose depending on how daring they are feeling on that day and maybe how tired they are!

Sometimes I relent and believe them, mostly they are happy to do their quota if they know that afterwards I will do mine.

My quota actually takes quite a long time if I do it after the children have finished with the assistance that they need so they decided to make it apart of their programme.

We decide if it a long-legged-sitting-practice time or a stretching-arms-practice time and then we get on with it. The children count in English and hold on tight to my feet either as in the pictures with their hands or putting their legs over mine and trying their hardest not to tip over.

For the counting they have five coloured buttons to count off the five lots of ten. They can only get up to ten in English without getting in a muddle so we make it a bit easier for them.

Their pronunciation is brilliant, I enjoy watching them intent and concentrated, and I enjoy listening to a littlie with athetoid cerebral palsy say a perfect three. Her tongue perfectly placed for pronouncing a TH!

The press down on my legs grasping tight, stretching their arms or legs, whatever is required. They really do make my job easier. They watch my face intently just as I am watching them. Whether they are looking for signs of exhaustion of for help with the counting I do not know, I just enjoy the few minutes of close scrutiny on both sides.

Occasionally they forget their task in hand. When this happens I get a quick rest while their positions get corrected and off we go again.

This whole routine keeps me fit and motivates the children, despite their earlier protest of:

“But today I am only two years old!”, they do their seven or eight anyway.

When my young colleague first witnessed this routine she almost collapsed with laughter, that was until she was asked:

“And how old are you, Évi?”

Now she gets her feet held sometimes although they think she is young enough to be doing it all alone.

It will be wash-board tummies all round this time next year!

I was going to say watch this spot for news as I so often do, but on second thoughts I am not sure that we will be photographing the tummies for public viewing!

Saturday, 27 November 2010

A book


"A sofa full of books" 27th November 2010 by Susie Mallett!!

The first book in a series of I-do-not-know how many

The working days have been long, both with the clients and without them. We have been busy after the groups so that my new colleague is confident enough to carry on with all, yes all, our groups and individual clients while we are in Hong Kong.

I have negelcted my bike, it is wrapped up in the courtyard behind the house. As it is snowy and rainy, and as I have been travelling, for want seems like months now, between work and the book designer's and to other appointments and home, it has been easier, and warmer, on the tram.

Now it is all over

The preparation for Hong Kong is all over, thats all!

Well just about all over. I have four more days at work and a trip to the dentist and the hairdresser to fit in before I jump on the plane, but the writing and the correcting and the searching for an extra page or an extra photo is all finished. The poster and the book have taken up every spare hour since my summer holiday!

Am I really an author as well as an artist?

I took delivery, when I got back from work yesterday evening, of my first publication. I am just off to the post to sent the first copy to my Dad who has sponsored the production! Thanks to him and my co-designer Uli there is a pile of boxes occupying my sofa containing hundreds of little books. It is quite amazing really to think that they are mine.

There is a whole bunch of people who have also contributed to this production, but most important of course are my clients who are the ones who give me something to write about!

It was actually a bit of an anti-climax when I go the book. The same kind of feeling when an exhibition of paintings has been hung. I have found the excitement with my book just the same as with painting, it comes with the doing. Perhaps the excitement will return when I press the first copy into someone's hands.

Now I have three boxes of small booklets on the sofa awaiting distribution!

So it is not all over at all

It is only just beginning. I have to start distributing and my co-designer made it clear last night that she will be waiting eagerly for the material to go into Book Two after christmas.

Watch this spot to find out more.


Tuesday, 23 November 2010

Tele-CE from the past

I just discovered the blog of someone I met through earlier attempts at Tele-CE, across the atlantic.

It proved very difficult to meet up with children in Canada because of the time difference, but the parents had lots of questions to ask.

Jesse is a budding photographer, he sells his work to fund his CE camps.

Sunday, 21 November 2010

Tele-CE

"Enjoying the joys of my work"


Something new

It is a grey, Sunday afternoon and I am preparing for work. Just a half an hour or so of work but still work. New and interesting work. The sort of work to look forward to.

I looked at my emails first before switching on anything else and I found an email from the person I was about to work with.

Val had written to me about her experiences working with me on Skype and she has invented a wonderful name for what we do.

I have been considering how best to describe our work together, but I could never have put it as well as Val does so I leave the floor to her. I will tell my side of the story later, but would just like to stress that we are still searching for a conductive group near Val's home. What we do together is her "starter pack" . It is an excellant way of introdicing her to a conductive lifestyle and of giving her the vital help she needed immediately after she received her diagnosis. At a time when most of the CE the world was shut down for the summer.

Tele-CE* by Val Verity

I was diagnosed with MSA with Parkinsonism three months ago. Almost immediately a long-term friend, Gill Maguire**, introduced me to the idea of Conductive Education (CE) as a way of life which could help alleviate the symptoms and problems associated with the condition. I had long been aware of CE for children, but had not realised it progressed beyond that sphere to adults.

I was naturally keen to access a class – but how? It was August and centres were shut for the summer break and anyway I was hoping to return as soon as possible to the Greek island where I spend a few months a year.

This was how I came to meet the CE Conductor, Susie Mallett. Susie lives in Germany and specialises in work with adults including those who have Parkinson’s disease. Our first ‘meeting’ was via email, followed quite swiftly by a face to face meeting in the UK - all orchestrated by Gill, who happens to know Susie too.

At this first meeting, Susie was very perceptive in how she assessed my problems and made immediate suggestions for how I might exercise, move, live differently. I felt more confident.

Then we discussed how we could continue this type of CE interaction with Susie in Germany and me in the UK or Greece for that matter; and Susie suggested using the internet with Skype, so that we could both see and hear each other.

We’ve had three sessions now. In the first one we agreed the length and frequency of future sessions, which in our case is 30 minutes every two weeks. We also spent a bit more time getting to know each other.

The following two sessions have been filled with CE exercises, sound advice and Susie answering concerns that I had. (One of these was about adaptations to my PC that I might need in the future. Susie did some research when we had finished our session and emailed me with a solution.) The exercises have included breathing and facial exercises. We have talked about becoming more consciously aware of the activity in my daily routine.

Is Tele-CE working?

Well, for me, yes. It has several advantages. First I’m within the comfort of my own home and have not had the stress and expense of a long journey to a specific venue; there is flexibility in that if I’m having an off day we can postpone to later or the next day; there is also continuity - when I eventually return to Greece we will be able to continue our sessions.

More - I get one to one attention and the opportunity to express, privately, deep concerns that I might have.

The down side?

I’m not part of a group, so I don’t get the support that a group gives, nor am I able to lend support to other group members. Undoubtedly, I will join a group when an opportunity arises, but I don’t see Tele-CE as trying to be a substitute for this. I would still continue my Tele-CE sessions in parallel with group activity for the one to one opportunities for discussion and confidence building that this brings.

Session four is due to start shortly. I’m going to ask what more I can do to help slow the deterioration of my posture. And I’m looking forward to a mix of practical advice and suggestions for exercise delivered with a good dose of Susie Mallett humour- via the internet.

Notes

*Tele-CE : Tele : at a distance, CE : Conductive Education

** Gill Maguire : Gill Maguire is a Honorary Conductor of Conductive Education


Friday, 19 November 2010

A helping hand

"Will there be a new bike in time for Christmas?"

"Anyone for football?"


My blog is being neglected, I am very sorry Blog and Readers. I do have an excuse I have been going to conferences and meeting, going to work and the thing that is taking up all of my time writing a book!

Well that exaggerating a little bit I have been doing all those things but the book is probably more like a booklet , as it is not printed yet I do not really know how to describe it.

Anyway books and work aside there is still time after a longer sleep than usual, and with now a morning off, to post just a snippet to say Évi is brilliant. Èvi is my now not so new colleague. And to say how wonderful it is not to work on my own every day.

She was so good this afternoon.

I could talk to the shoe, splint, wheelchair, cushion and wedge maker and anything-else-we-may-need man, who is called Ariel. The man who loves our children so much. While we talked about what everyone needs over the next few months the children still had someone with them, they were still learning through having fun and games. Évi was there.

Ariel is the best person for the job of providing our clients with what they need. It is lovely when he comes into the group, the children gather around him as if he has a bad of goodies to dish out. The goodies that he dishes out are time and understanding. Then later after all the measuring and fitting he brings something that makes life a bit easier for them all. A bike some shoes or a seat to rest on on the way home with the rolator.

Little Princess was in a dilemma today. She loves to be with Ariel, she especially likes his name! It reminds her of the mermaid! She knew that Ariel had driven over especially to fix the screws back in the ankle joint of her splint and also to fit a little seat on to her rolator. She wanted to be with him but she also saw that new games were being played on the mat. I suggested she asked if she was needed anymore before she scampered off to join the others. This she did, Ariel understood her words and he replied that yes he did need her. There they sat together for another ten minutes, he got her to turn the spanners while he fixed a seat on her rolator which she then she hoped up on it like a little bird! She stopped her shaky movements as she helped with the spanners by leaning her head on his arm. Team work! What a lovely feeling for them both. Littlie was so relaxed as she knows the shoe man since she was two years old and he enjoys her company very much!

It was a lovely scene to observe. Just like when we do our arty holiday projects that are on a larger scale than the normal art that we do it was an opportunity to watch and take note of how a child uses what she learns in our daily activities in the more “everyday” activities in life.

PS

Sorry but the photos are not of this story, those are still in the camera, but of last week when the same man came to repair a bike for one child and put Little Priincess on it to see if it was the next stage up for her. It was, look how straight her back is!

She looked at me as Ariel helped her on it, this was less help than she needs to get on the awkward trike that she has. Now she was on a two wheeler for the first time in her life, still with stabilisers, but a bike like her brother’s all the same.

She said so clearly “I am scared”, so Ariel held her tight. It only took two metres before she was off on her own and the owner of the bike was running behind her, hot on her trail in case she rode off with his bike!

Monday, 15 November 2010

Segway PS


My "Simply Moving" posting earlier today would not allow me to put up another photo. Here is a PS, with a photo of the Segway just like the one that the young man who spoke at the conference got his motor-scooter license to drive.

What a lot of successful young people there are in the conductive world.

Re: translating books, Würzburg Three




"Would you like to be a Godparent of conductive literature?"

This advert relates to Andrew Sutton's posting "Translating books". It was distributed at the beginning of the afternoon session at the congress at the weekend.

http://www.conductive-world.info/2010/11/translating-books.html

Würzburg Two: Simply moving

"At the conference"


Segway and other useful things that make the world go round

Conductive upbringing, among many other things, means to me being open to finding solutions that are useful to clients at the precise moment of their life that they are experiencing, right now.

Over the past few weeks this has meant for me discovering how computers can be used by clients with physical disabilities. One client is restricted to using a computer only in a lying position in bed, and at the same time with restricted use of his hands. Another client with Parkinson’s disease is looking forwards and planning for a future when perhaps her requirements will be different to what they are now. I discovered that both these clients will be able to compute as before once they have the correct equipment.

I wrote about one of my stroke clients buying herself an electric wheel chair last week. This weekend, at the congess I picked up a brochure for a Segway, after listening to a young disabled man talk about his life and how he has just passed his motor scooter license that allows him to use a Segway on the streets in Germany.

Although I first read about these strange motor-machines eight years ago in a magazine on a train. It is only in recent months that I have seen them appearing on the streets of Nürnberg. I have seen them all over the city, being used by tourists taking guided city-tours, and I have also seen one or two being used by people with disability. There is often one parked in the nearby supermarket and outside the local Caffé Fatal. I have seen the Segway‘s owner, who has multiple sclerosis, and have seen many people speaking to him and asking him about his use of it.

One of my clients with multiple sclerosis has tried one too and he was surprised by how good his ability to balance still is and how well he could use his body to change direction. He had thought that these abilities were worse than they in fact are. Because of the weakness in his thigh muscles, that makes stepping so difficult, placing his feet was becoming very insecure and this causes him to lose his balance. He actually discovered that on the Segway, where his feet remain stationary, his trunk control is actually still very good.

During one of the presentations at the Würzburg conference the young man who is the son of the Founder of the Würzburg Fortschritt Verein, spoke about his use of the Segway. He showed us a short film of how he took his driving test on it and proudly told us that he gained his motor-scooter license. The Segway has increased his mobility, making places more accessible to him than using a wheelchair would. and it also looks really modern and trendy seeing him whizzing around on it.

Notes

Segway-

http://inventors.about.com/od/sstartinventions/a/segway.htm

http://inventors.about.com/od/sstartinventions/a/segway.htm

Conductive Congress Würzburg, One

"Where we spent the weekend!"
"The view from inside"

A flying visit to the Fortress-Würzburg

I was at the Conductive Congress in Würzburg at the weekend. It was a flying visit as I had to work on Friday and I had an appointment with the designer of my poster and book on Sunday morning.

Words

I arrived in time on Friday evening in time to hear the last thirty minutes of the podium discussion, when the chances for integration and inclusion were being discussed. The title of the discussion had also included the questions: “How much inclusion do we need?” and “How much independence will be accepted?”. I did not hear anything said about these two questions, perhaps I missed that part of the discussion.

I did hear reference made two or three times to the methods used in Italy, but these were not elaborated on in the part of the discussion that I heard, perhaps someone had mentioned them earlier.

I wonder whether publications about the conference in the Internet or in hard copy will reveal this to me later.

I was given a folder as I registered that contained a pen and a notebook and a couple of brochures from one of the centres hosting the conference. Unfortunately it did not contain a book of abstracts. I had found the abstracts extremely useful after the conference in Munich in 2008 as I could look there for information later about the presentations that had been in a different parallel session to the one that I was in, and also to look up names of people I had heard speaking.

There was no mention during the conference that there will be anything produced later so it does not look too hopeful that I will be able to read about the presentations that I missed on Friday afternoon.

During the morning on Friday there were visits to the conductive groups in Würzburg, some of which I already know so I was not so disappointed in missing this.

Images

It was a bit of a shock as I walked in to find that my face looking at me! Not only once but in one of the brochures four times. Actually it was not only my face, therewere pictures of me working with a stroke client.

I have mentioned before in my blog how it has been a surprise for me on other occasions to suddenly discover myself in pictures on yje conductive websites pf centres where I have worked over the years. Now I have that surprise again, discovering myself in brochures.

We, as I expect everyone does, have to have consent to publish pictures of our clients, but never once has anyone asked my permission to print a photograph picturing me at work. It is not that I do not want my photograph in print, it is that I want any photographs used to be telling a story that needs to be told, and not just a snap-shot. I wish to be asked, just as we ask the clients, so that I can decide. Sometimes a photograph really does not illustrate what is intended to be said. The ones that I saw at the weekend are not bad, although one or maybe two could have been being saying it a lot better!

I did recieve an apology, as soon as my shocked face was noticed!

"Conductive" should mean bringing together

I will write about some of the things that I heard during the weekend separately. Just for the moment I want to say that I think that the general feeling for those attending was positive, though once again I heard that, although interesting, this "conductive congress" conference failed in the same way as have many before in bringing together in making a connection between conductive pedagogy and the different themes of the other presentations.

I was told today that this had been the job of the moderators, but there was often no time for this to happen between the presentations.

Although time-keeping was quite good by conductive-congress standards, time was still too short.

Time was also cut from the important tea breaks, when we usually get to swap information with our colleagues who work all over the country.

Unfortunately too, on the Friday evening, the coming-together snacks and drinks that had been planned, where more “info-swapping” and “getting-to-know-you” could have taken place, were cancelled at the last minute. The conductors missed this most of all I think. We really enjoy coming together once a year and finding out what the others are up to. Many of us have been in Germany for a long time and have worked with each other from time to time over the past fifteen years. Sadly we ended up in small groups in several different restaurants throughout the city, which was a shame.

I have just been informed that all in all the majority of people were happy with what they saw and heard, and that is the main thing. Perhaps we will be able to read other thoughts on the conference elsewhere on the blogosphere. I met several conductors who work in Rosenheim, a link to their blog is to be found on Conductive World. Perhaps they will write something too.

I will write more about the individual presentations that I heard on Saturday, as I get time during the next week.

Notes

www.fortschritt-wuerzburg.net/kongress

Sunday, 14 November 2010

Lest we forget

"Poppies" by K.L.Mallett

I am taking the time at just after eleven to post this painting by my Dad.

Taking a couple of minutes to take a deep breath and have a few quiet moments before getting on again.

It is a busy time, as I expect it is for all, especially for Hong Kong-goers. A time for preparing for the Congress and preparing whatever it is that we leave behind, hoping to have all in good order so that everything runs smoothly without us!

It is a time with more hours working than is really good for me, with a poster finished and about to be collected from the printers, and with a little book still in its final stages of editing. This weekend was also the time of the year for Germany's own "conductive congress", this year in Würzburg. I had hoped to report on it in situ but I have not managed it. More perhaps later this evening when I get back from the third, but probably not the last, "book-fitting".

So I am taking a short break with this picture by my special Dad. A painting of poppies that are rather like those in the fields in Flanders. I am sitting back, taking a deep breath, thinking about a few special people and places. Watching a nice film in my head of special times and of my hopes and dreams for the future.

I am certain that my book-editing will be much easier after these few peaceful minutes and that the world will look less busy. I will take myself back into the slow lane where I prefer to be, taking things at my own speed and not being influenced by the lives that I feel are whizzing past me at top speed.

Wednesday, 10 November 2010

Holidays full of success

"Big Sis off to the shops in 1959"


"Been there, done that!"

It was the first day back for the after-school children today, following the autumn holiday.

Actually, two of them had no break as they had come for a few days during the holiday to do some arty, crafty, cooking, playing, holiday-camp "Petö". They even brought a friend along one day to join in the fun!

And one little boy had a holiday at home with all the family. Today he was excited to tell us something rather special about his week at home.His dream come true!

At the end of the summer holiday one of the school children had achieved her dream of the moment. That was to go home alon. She had managed it not on her bike, as she at first imagined she might, but on foot! This success has already been featured here on my blog quite a lot!

We are all so happy about it, none as happy as Little Princess as we witness each evening as she puts on her coat, says goodbye and walks out of the door.Now, on these dark evenings, she wearing her flourescent safety vest, with its blinky reflector-light switched on. We try just to say goodbye and let her go, but we all end up at the window watching as she passes, and she always turns to wave.

This child is lucky that she lives just down the road. It is still a long way for a small, seven-year old, athetoid girl, but near enough to have been practised and to be a real and achievable goal. Now she is wearing the imaginary T-shirt stating: "Been there, done that!"

Jolly Professor would love to wear the same T-shirt, but he lives ten kilometres away and goes home with his mum in the car.

So we came up with another stepping stone for him, and this holiday not only did Jolly Prof. take huge steps, but his brave family took them too, by letting him.

Jolly Prof. went to the bakers, rucksack on his back, to fetch the breakfast rolls. This he did all on his own. Not only that, he did it twice! It is a distance even longer than Little Princess's walk home, and over a couple of busy roads.

On his very first bread-shopping expedition he told us that he had memorised the assortment of bread and rolls that he was to buy, which included croisants, sesame rolls, long split rolls and two special treats for himself and his brother. On the second occasion, he explained that he wrote himself a list, probably just for the fun of it. He would have remembered a list of a hundred items on such a special occasion!

What a delight it was to see the look of wonder and joy not only on his face but also on that of his little friend, she who walks home alone. She knew better than all of us what a thrill it must have been for Jolly Prof. to go out of the house all by himself, for the first time ever! We decided that the breakfast must have been the best that his family had ever tasted.

Celebrations all round!

Little Princess had something to celebrate too. She walked in from the car today carrying her school bag on the back of her rolator. She has been asking us to sort this out for ages and today was the day.

I have promised her that we will practise crossing the road with this weight hanging on the back until the day comes when Grandma does not have to come over to pick it up at some time during the afternoon.

Those school bags are so heavy that most people would be pleased not to have to lift one, let alone carry it, but when you are a new schoolgirl or schoolboy in Germany, you want to be like all your friends and carry your new satchel yourself. Jolly Professor now walks proudly with his on his back!

I think that it is time to have a day of celebrating the achievements of these wonderful children, although we did have quite a festive atmosphere already today on hearing all the "holiday" news about conductive living during the holidays, without a condutor in sight!

Sunday, 7 November 2010

Change, new places, strangers and decision-making

"Test drive" November 5th, 2010

Lost for words

It was not my stroke client this time who was lost for words, but me. All that I could say was that she was really brave and that it was amazing to me to observe and think about how much progress she had made over the years that I have known her.

This all made her smile even more than she already was doing, but I still felt like these were not the words that I was searching for to express what I was feeling. She was doing a lot better than I was with the words but we were both smiling from the inside. Several souls were really happy.

My client found the words to tell me that she felt like she had found her feet in her world again, and had regained a freedom of movement that had been denied her for many years.

Carefully organised

I had the great pleasure on Friday morning of accompanying my client and her husband on a trip to take a look at electrically powered wheelchairs and scooters.

It had all been carefully planned. We had made several phone calls then we waited until the appropriate articles were available for testing. My client planned the timing so that she and her husband could pick me up from the train then drive us on to the suppliers, where we would have time for her to do a couple of test runs and still get me back to work in time for the arrival of the littlies who were anticipating their half-term cooking and painting action.

It could not have gone smoother. All of her well-thought-out plans meant that my client was so relaxed and enjoyed the morning more than she had imagined.

She was exhausted from all the planning and the thinking but she had done it all alone. Yes, her husband was there to drive the car and ask a few technical questions. Yes, I was there too, having been briefed in the car and on previous occasions as to what it was exactly that she was after and what she wanted to talk about.

I was not needed but I was looked to on a couple of occasions for back-up and encouragement. I think that my client would have thought of the technical questions too. It is amazing that this was the same lady who ten years ago had been told that she was not eligible for speech therapy any more, even though she still could not speak much, and not at all in sentences to strangers.

What a brave lady

Here she was in a strange place, with strangers, making big decisions. All these things bring about a state of excitement, anticipation and worry that usually cause her whole being to change, from inside to outside. In new surroundings, in demanding situations, she looks and sounds completely different rom how she does when she is going about the life that she knows, with people whom she knows and trusts.

These are just the same reactions that we all have but as with many stroke clients, it is so extreme that the spasticity increases to such an extent that movement can be restricted and painful, and speech becomes very difficult too.

On Friday I was amazed and, as I said, speechless too

My client just sailed through the hour, test-driving one vehicle after the other as though she had a joystick in her hand and a motor under her seat every day. In fact she had never been in an electric wheelchair in her life and up to a year or so ago would never have been able to organise a morning like today’s to try these ones out. The thought would not even have entered her head that she could whiz around in a high-speed wheelchair.

She took to it all like a duck to water and amazed the men who were looking after her so brilliantly. They were kind and patient, they had gentle voices, listened carefully to her every word, and understood so well.

You could say “Of course they did, that is their job” but, as my client explained to me in the car later, she has been treated very differently at other providers of equipment for people with motor disorders. She was impressed with the service hat she received, just as much as the men were impressed with her.

My client did more than whiz around inside the store and out, trying out all the vehicles that they had on offer. Some with fat wheels at the front and others with fat wheels at the back. Some with padded-leather seats. Some just ordinary manual wheelchairs with a motor added. My client not only test drove the chairs and scooters, she tested herself too, to the limits.

She was able to discuss the differences in the various models and explain the different feelings that she had when riding in them. She asked the questions on charging batteries and about availability of ramps to get such a heavy machine into the back of the family car.

And in the end her husband said if to her that if she wanted one of the “machines” then it was up to her to make the decision. He had every faith in her too.

And decide she could!

She decided there and then on a second-hand model with a very comfortable seat, and with fat wheels at the front that meant the spasiticity did not shoot into her legs as she bumped up a small kerb. She decided on a ramp for the car and even asked for a new seat belt as the one that she had used was to difficult to fix with one hand.

She even made all the financial arrangements herself! All done in less than an hour!

I was really impressed. I can tell you. I know that she has been considering this for a long time from the comfort of her own home, talking about it with me and with her husband, but even so she was wonderful and I told her so. She was so good at questioning, and comparing, and deciding.

We all went home smiling, it had been a successful day all round.

Come spring my client will be experiencing a freedom of movement that she has not felt for fifteen years. Not only a freedom of movement but much more. She will have independence, she will not have to rely on her husband for so much, their relationship can change, maybe something will return to how it was before the stroke occurred.

Having a chat as we go

Her not-getting-any younger husband will be able to walk beside her when they are out and about, my client will not have to worry about him getting exhausted by pushing her, and they will be able to communicate side by side. This was something that they discussed in the car afterwards. They both said how awful it was talking ahead into thin air, knowing that the person pushing probably could not hear. The person pushing leaning over to listen makes pushing almost impossible. From now on, walks in the forests will take place side by side.

(Yes indeed, there are many walk-ways in Bavarian forests that are wheelchair-friendly.)

On this day as on every day, conductive living was not about learning to walk, it was about learning to solve problems and learning to live.

Blogging, vlogging, information

"Those misty November days are here", by Susie Mallett
6th November 2010

Blogging for the deaf and hard of hearing!

It is always interesting for me to discover something new in the world of blogging.

Blogging and developments from blogging are taking up much of my time these past few weeks, which means that I am left with very little time for the actual physical process of doing it.

Sunday breakfast

The Guardian Weekly did not arrive on Saturday as it usually does (is there a postal strike in the UK?) So this morning, instead of reading Nature Watch and puzzling over the crossword at breakfast, I spent a few minutes looking at this :

http://health.ongkinhviet.com/?p=5865

and then I found this among other “postings” on the original site:

http://health.ongkinhviet.com/?p=5865

I smiled quite a bit more at breakfast time than I usually do, when I am joined by Guardian Weekly!

All this had come my way through a Google Alert that told me that it was sending me to a site where there was something about Conductive Education, even though it was headed “codabrothers”.

I usually send any Google Alerts that come my way straight on to Gill Maguire, but this one I am glad to say I opened up. I found it very interesting because of my involvement at the moment in developing ways of providing information through the Blogosphere and other means.

Maybe others will find it interesting too, even useful.

The “codabrothers” are Children Of Deaf Adults. They have both made careers in education and interpreting, media services and more, for the hearing impaired and deaf. Read more about them and there work here:

http://www.codabrothers.com/blog/?page_id=71

Monday, 1 November 2010

The Day of the Dead


November 1st, 2010, Nürnberg

Today I was in one of the big cemeteries, the one in the south of the city. It was a lovely atmosphere and the most gorgeous autumn weather.

The cemetery has many huge, hundreds-of-years-old beech trees, also sycamore and horse chestnuts.

It is Allerheiligen, The Day of the Dead, All Hallows

The cemetery and the streets and trams were full of people. The neighbouring streets, beside the cemeteries, were full of cars. It was as if there was a football match on, but much quieter.

I walked with the bike (no cycling is allowed amongst the dead people). There were crowds of live people walking beneath the huge yellowy-brown leaved trees in the gorgeous sunshine.

Almost every one dressed in black, all in their Sunday best and of all ages. From babies in prams to old men and ladies on the arm of someone else. There were young couples with toddlers and people pushing wheelchairs, there were people with walking frames and children holding hands. There were people in groups chatting, family groups walking to the grave of a loved one. There were people standing in circles, praying around candles or sitting on the benches that are scattered around beneath the trees, beside the graves and around the walls filled with urns.

I have never experienced anything like it before in Germany. Once I went to a cemetery on November the first in Budapest, but that experience was much different to today’s.

That day in Budapest was a cold, bitterly cold, frosty day. It was late evening and there was a grey and dreary light. There were no beautiful trees backed by blue skies and the people seemed to be draped in black, almost enveloped in their black clothes and grey atmosphere. Not dressed in their Sunday best like today's people were. The feelings I had on that day in Budapest were very different to those of today.

Today the families were all out to visit. They were visiting each other and visiting their dead relatives. The atmosphere was so peaceful and even if sad there was such a closeness amongst strangers, something I have never known before. It radiated an inner peace a serenity, but there was a lot of sadness there too.

But there was so much respect, for the dead and for each other. Children and teenagers behaving well, playfully quiet, not restrained and false, they were respectful. It was nice to be there and the flowers that were being brought in were spectacular.

Unfortunately my camera battery ran out before I could even photograph the amazing blue sky above us, hidden slightly by the amazingly autumnal trees.

It was a picture too beautiful to capture on film or with paint. It was so impregnated with feelings and the movements of people, the almost silent murmurings and the respect for each other that it is only possible for me to describe it in words or to keep the image safe in my head as a memory.

Today is a holiday in Bavaria. I think it is probably one of the nicest celebrations as regards to the atmosphere that there is. The buses and trams were full, some people carrying baskets of flowers from gardens and allotments, others with bowls with dried flowers arranged for them at one of the many stands and shops on the roadside. The only places open for business today.

There were whole families out together, not all in a rush as they are when they go shopping, are on their way to work or to school, they were making a relaxed journey to the place of rest of the dead members of their families.

I am so glad I went out to make that journey too so I experienced all that I saw and felt.

Notes

Allerheiligen -

The power of books


janet-lee-harrold-2.JPG

By Janet Lee Harrold

Take three books

A few weeks ago I wrote about discovering a book, written by a mum for her young son whose father is a wheelchair user: Mein schneller Papa“:

http://www.susie-mallett.org/2010/10/there-are-still-people-who-think-that.html

http://www.susie-mallett.org/2010/10/books-and-magazines.html

I expected this book to be really useful in my work with children, and so it is proving to be.

What I did not expect was now useful, and motivating, it would prove to be with my adult clients too.

Last week we were practising writing with the hand not affected by a stroke. This is something that is so important for the well-being of stroke clients. To be able to write well with the hand that before a stroke was not the dominant hand must be practised, and it is very difficult.

It is more often than not right-handers who face not only the problem of having a dominant hand that does not function as it did before but can also suffer from cognitive symptoms that also make writing difficult for them.

Left-handers with a left-hand dysfunction are usually spared the extra burden of a cognitive problem, but not always.

A legible signature, a signature that the client likes, is the first aim. We then move on from there to create a good handwriting style . It is important to prevent the client feeling that the writing style is childish.

One person in the group has moved on a long way. Not only does she write legibly and fluently, write lists and notes for herself, but she can also express her own personal thoughts.

Last week it was not until the group had finished, coats were being put on and goodbyes said, that I noticed what this lady had written on her handwriting-practice paper:

"I wanted to write a book, but I do not think it will be possible now.“

Earlier in the session my client had been looking at the “Mein schneller Papa book, perhaps she had already sown a seed of inspiration in her thoughts. Something like "Perhaps I could after all write that book".

As she dressed to go home and her husband and I chatted, we discussed the possibility of writing the book together, helping my client to fulfil her dream and helping other people at the same time.

We developed the idea of a picture book with my clients words describing how it was and how it is and what happened in between. A book on the hidden symptoms of stroke by a stroke victim for stroke victims.

A book full of all the wise-words that I have heard from my client over the past fourteen years.

“But", she immediately said, “I do not remember how it was. I do not remember what it was like to learn, what it was like before I learnt and moved on step by step to a new stage in my life.“

“But I remember“, said her husband and I simultaneously. “We can help!“ we continued.

We immediately jogged her memory with a couple of examples of how the family had lent a helping hand in her learning process, and that set her off. She did indeed remember. In fact she remembered lots and the fact that she remembered pleased her much more than what she remembered!

This client's husband is a keen amateur photographer, his wife a would-be author. Me and Évi have tons of enthusiasm and some necessary computer skills. Together as a team we have all we need to put together picture book with words for fellow stroke sufferers.

An idea was born

The husband will get some advice with how to work on his photographs in the computer and my client will get just a little bit of memory-jogging about all the snippets that she has told me over the years.

In just a few minutes, just because I discovered a hand-written note expressing the loss of a dream, another dream came alive.

All good things come in threes

I always say that grandmas should get medals, now I am even more certain of this!

Late last night a Google Alert arrived in my inbox. Surprise, surprise more about books! Book number three.

Not only about a book but about the life and works of a special and talented grandmother, who is using her creativity not only to raise money for conductive sessions for her grandchild but also to bring a bit of normality into the world of disability.

The Google-message alerted me to a blog where “ fabulous local mamas“ are celebrated. It is called Boston Mama’s Rock:

http://www.bostonmamas.com/2010/10/boston_mamas_rock_janet_lee_harrold.html

Here you can read all about Janet Lee Harrold, artist, activist, and weekly bloggist in the world of disability.

Janet Harrold has made a book for her grandchild. It is called: ABC’s Flowers and Trees: a walk in the public gardens.

Although made for her grand-daughter the book will, I am sure, be welcomed by other children and their families, just as Mein schneller Papa has been.

Janet Harrold is selling paintings and this book to raise money for conductive sessions for her grandchild.

Not only a book, greeting cards too

This artist is now also planning a series of greeting cards for people with disability, and using her voice to improve and widen the understanding of disability in the world.

It is worth reading the blog celebrating how fabulous she is and also taking a look at her own blog at:

http://www.exceptionalfamilytv.com/blogs/families/janet

Books forever!

The power of books, despite the growing importance to many of cyberspace, is as strong as ever.

Notes

Mein Schneller Papa, es gibt vielle Möglichkeiten schnell zu sein -

by Bianca Jahnke-Oppold: ISBN 978-3-00-031 273-1

www.mein-schneller-papa.de

Susie Mallett -

http://www.susie-mallett.org/2010/10/there-are-still-people-who-think-that.html

http://www.susie-mallett.org/2010/10/books-and-magazines.html

Janet Lee Harrold –

http://www.bostonmamas.com/2010/10/boston_mamas_rock_janet_lee_harrold.html

http://www.exceptionalfamilytv.com/blogs/families/janet

Her book -

http://www.amazon.com/gp/product/1606722581?ie=UTF8&tag=bostonmamas-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1606722581