Sunday, 28 March 2010
…and a bit on shouting and being loud
Since I re-wrote 'Kabaret', the posting that disappeared, I have been having a few more thoughts on laughing, on when to do it and how much, and how to control it.
Over the years I have found many different ways to help with this control and my clients and their families have developed their own techniques too.
It would be very useful for me and I suspect many others who read my blog if we could share any experiences that we have had.
In what situations do such problems occur? When are they embarrassing and when are they most disturbing for those around? Does the society itself help to solve the problem or is this another case of people being afraid to say No?
I am especially interested to hear from the people who have themselves managed to control their own inappropriate laughing and about the techniques they use. Everything doesn’t work for everyone, motivations and senses of humour are different.
How have parents, carers and conductors been able to help?
I think it would be very useful to gather a few more tips to pass on to others.
Turning down the volume
In connection with this I have been working again recently on the problem of talking too loudly for the situation that clients are in at a specific moment.
Teenage and adult CP clients and stroke clients are the main groups in which I come across this problem, but it can happen anywhere. We hear it all the time when we are sitting in a restaurant or on the train.
It is often very difficult for a client to understand that in a large group of people it is not always appropriate to talk loudly. If someone is a member of a large family, with many children and perhaps deaf grandparents around, it is often necessary to speak out loudly to be heard. Often it is hard then to adjust the volume in a quiet situation with many people around.
Yes of course we practise whispering and shouting in conductive groups but it is not until going into the appropriate situations that we can associate the learnt skill with the social reasoning.
My client did really well last week in the several restaurants that we visited but it was more difficult for him to judge the volume on the bus. With the noise of the engine and the other passengers talking around him he needed more help to balance the level.
We have discovered that his body language plays a huge role in the volume of his voice. If he keeps his hands in his pockets or sits on them his voice does not rise quite so quickly and to such a high level as it does when they are flying around pointing or emphasising.
On the other hand, I encourage my stroke clients to use their hands as body language, especially on the affected side to encourage movement, the flow of their speech and their confidence.
It is not just the voice that can be loud.
First impressions can be lasting impressions and they have an awful lot of influence on the ability to make friends and to be accepted in communities and groups.
As well as laughter and voice I have been working recently on how to make an entrance.
We have been talking about how bursting into rooms, sending the door flying back to hit the wall and then closing it with a crash, has a lasting impression on those already in the room. And when it is repeated often, then the first impression is reinforced.
We have discussed how, if this happens at home in just about every situation, even bursting into an occupied bathroom, it is annoying to the family. We discussed how, if it happens in other situations, places that are visited regularly, for example at school and at work, at swimming lessons and at physiotherapy, it makes people perhaps less friendly and welcoming. If it happens on first time visits it can give a very long lasting, perhaps false, impression.
This theatrical entrance brings all eyes on the door and the persson standing or sitting there. Sometimes this is not wanted at all.
Sussing out the joint
In our discussions we have talked about how we can take a split-second look around the room being entered to sum up the situation and tune behaviour to suit it. If it is a party atmosphere that we observe then a loud entrance might be tolerated, but we must ask ourselves whether we can tolerate the attention. On the other hand, if we have decided that the room is quiet, then we must go in with a softly, softly approach and test the waters before we speak.
All this control, all this looking outwards and assessing a situation, is difficult enough to do if just a bit wobbly on the feet or when using walking sticks, but even more difficult in a wheelchair, especially an electric one. But it is possible, even if the motor of a wheelchair is loud and the click of the gearing too, to enter a room demurely. It has a lot to do with speed of approach and body language. When walking into a room a speed must be found so that concentration can be divided, on to not falling over and on to the situation being entered.
In a wheelchair a speed must be found at which crashing into doors and walls can be avoided, and the head can be raised to look outwards.
All part of a conductive upbringing as it is of any upbringing.
Saturday, 27 March 2010
I have been up north again where in the past few days the spring has at last poked out its nose. The crocuses popped up to say hello too. The sun and the spring rain were doing a good job of clearing the huge piles of snow.
I was given, by the weather, at last two or three chances in the twelve days that I was there to get out to walk in the still cold but warming and greening hills.
Back now in my gorgeous and much missed flat I was really happy to see when I got up today and went out onto my balcony that the tree where the birds feed has also realised that spring should be showing its face here too. There are tiny dark red leaves shooting on the prunus and the soft, fluffy casings around the leaves of the acacia tree are beginning to split open.
Although there is always so much to do when I get home again I had planned to go for a wander around the neighbourhood to see if spring had brought anything bright and cheerful. I just wanted to observe the changes in colour, to take note of the retreat of the greys and the return of the purples, oranges, whites and yellows as the first signs of spring blooms appear in window boxes and front gardens.
My well intended plans have amounted to nothing. I was just about to get myself ready when darkness fell in the flat. I thought that the power had failed before realising that I had not had any lights on, and the computer was still working.
I looked outside and what did I see?
Snow! And then lots of rain.
I snuggled down in the cosy flat with all the newspapers, letters and books that had arrived in the post while I had been away and I soon forgot about the planned recce of "spring in Johannis"!
I had already been delayed last night on the train by a sudden storm of snow and hail, and lightning. The lightning struck and caused the ICE train that I was on to make a detour , it travelled for the first part of our route on the slow track.
I didn’t mind the slow train, I didn’t have anymore connections to make, but I do mind, just a little bit, the return of winter weather.
The only good thing about this prolonged winter weather is that I can wear my winter clothes a bit longer, I prefer them to summer clothes. I love the cosiness of being bundled up, but I don’t like the snow boots very much anymore. They are the only way I can keep my feet warm but are so clumpy and cumbersome.
At least now it isn’t so cold that the snow stays on the ground so I could put away those boots until next year. Or should I wait just a week or two longer?
Weather Report, “A remark you made” –
Thursday, 25 March 2010
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 about possibilities for museum visits on the Net
- 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
- Preparing lunch
- Tying shoes
- Taking medicine and tablets with no help
- Mixing paints
- Clearing and preparing the table
- Filling and emptying the dishwasher
- Tidying and cleaning the bedroom
- Drinking quietly
- Getting ready for work alone
- Walking five kilometers, not every day but sometimes
- Sweeping the workshop
- Talking to people in the street
The last list are experiences that are all in the bag, but actually carrying some of them out is still dependent on Lust und Laune, feeling in the mood.
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, the bits that keep that 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.
Over the last few years things have been changing, he is capable of more and more. 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.
Not only was Brother part of the doing he was also part of the other accompanying ritual, 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. 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 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 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.
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 children she would stand up for him and defend him if he had been naughty. Now she is the one at home with him all week and is really tough.
It is interesting to observe how relationships change in this big family. Teenage and adult siblings of a motor-disabled young adult behave differently to how they did when they were children. As they become more and more independent themselves, they expect their disabled brother to become so too. They take on a Little bit 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 still now as young adults.
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. Of course she missed her Mum while they were all away on the various “therapy trips” that they made, but she was 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 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 brother those teenage experiences that he would otherwise miss. 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 giving her brother as many teenage experiences as she possible can. Taking him places that a nineteen year old doesn’t wish to be taken to by a parent and doing 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 when she does so.
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 the being tough on her brother. He was, I suspect, expecting it even when 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.
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.
Big Sis follows her parents 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.
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 “Petö” 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 with heaps of Lego comes, so often the end of being able to move around on the floor comes with it, 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 any more, 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 doesn’t. 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 roleof upbringer with someone else, just like on that first day at Kindergarten.
Wednesday, 24 March 2010
Last night I went to see a cabaret artist at the local Schutzenhalle, that’s the village hall to us Brits.
The hall was full to overflowing with four-hundred of the locals, all out for a jolly good hearty laugh.
And that is just what we were there for too. Me, my client and his sisters with their boyfriends joined half the village and laughed solidly for two whole hours.
The cabaret artist, Freda Braun, who came from just over the hill in Winterberg, had us it fits of laughter as soon as she walked in through the door at the back of the hall.
She had not even set foot on the stage but her very presence had us in stitches.
She had still to open her mouth and already the sides of every one in the audience were splitting.
Freda Braun had perfect timing, a conductor’s dream!
She could, with a turn of a cheek, a wink of an eye, the nod of a head or a change of posture, have every single person in the room laughing out loud.
She had observed the movements of the characters she was mimicing in so much detail that she had enough information to write a conductive programme for all of them.
It was amazing how much talent there is to be found out in the countryside and how, with such seemingly simple means, one person can motivate a crowd to laugh!
My client was a delight to have sitting beside me. He was laughing gently, trying his best not to let his laughing get out of control. He has had to leave many a performance in the past because he was disturbing the rest of the audience when his laughter has got louder and louder and he was unable to stop.
This didn’t happen last night. He had his laughter absolutely in control, he didn’t fling an arm at his neighbour or throw himself back in his chair, he enjoyed, he watched and listened and he laughed gently at the right moment. His timing was perfect too.
I think that he was so enthralled and so absorbed in what he was hearing and seeing, and excited by the fact that he understood why it was all so very funny, that this helped him to concentrate and not play the fool. He was laughing unconsciously, almost as a reflex. It sounded real and it remained in his control.
My client loves this kind of theatre as does his twin brother. His brother performs with the local theatre group and this has been the biggest motivation for my client to control his laughter.
He has watched several of his brother’s performances and has learnt to control the loudness of his laughter. It would be the end of the world for him to be asked to leave a show when his brother was performing. That is the best motivation that he could have had and last evening was evidence enough that it has worked.
The client I was with last night is not the only one of my clients to have problems with laughter. It is often very difficult for people with cerebral palsy to laugh in the appropriate place, with the approriate volume, and for the appropriate amount of time. And very often the needle gets stuck. They cannot get out of laughing mode however much they try.
I have a client who is now at university who would phone me for tips about laughter. She oftern had problems when at high school, usually in the middle of a maths lesson. She would find herself still laughing long after her teacher had made a witty but not particularly funny remark. Her peers had long forgotten it but she would keep switching back into laughter mode, and this she found extremely embarassing.
It was difficult for her, but we got it under control eventually. She developed a technique of thinking through a list of very serious subjects that we compiled until the laughter stopped.
Back to the cabaret
I need not have worried: last night there was no embarassing moments at all, Freda Braun was wonderful. I surprised even myself by laughing out loud for two whole hours and I just loved listening to myself doing so.
Not only did I enjoy my own laughter but that surrounding me on all sides. It totally enveloped my whole being.
The old ladies behind us seemed to think the same, they were roaring, one with her deep bass laugh and another with her high soprano. They had the effect of the Laughing Policeman on all those near enough to hear.
What I enjoyed as much as anything, almost as much as the hundreds of jolly faces, was understanding every word. This meant that I was able to laugh at every single joke, even those about the surrounding villages and the Catholic Church. There is a lot of friendly inter-village friendly rivalry, and just about every one is Catholic in that area.
There were no strong regional accents for me to need interpret, as there are in the Bavarian theatre that I am more used to experiencing. So I laughed a lot more than I usually do!
Freda Braun is quite well known in the area and someone has found her funny enough to write a Master‘s research paper about her and about her extraordinary ability to keep a whole hall full of people rolling about in the aisles for two hours non-stop, even when she isn't speaking. And she achieves this just by describing events that could happen in our everyday lives.
Freda Braun has the sort of timing any conductor would eat their heart out for, but her show flows so naturally it really is something special, well worth a Master's research paper!
I wonder if disability and the ability to control laughter is worth writing a Master’s research paper on too. It is certaining just as special when clients such as the two mentioned above have their laughing skills well enough under their control to go out anywhere without being afraid of being asked to leave.
Freda Braun –
The Laughing Policeman-
Andrew Sutton’s posting yesterday was a rather sad one, called "It's been a poor old day. I could do with a laugh". Well, I thought, we all feel like that sometimes and I was about to suggest that he read my own posting on laughing when I realised that it was no longer there!
By the way, if anyone read my original laughter posting disappeared and thinks that I have left anything important out of the new, one please let me know.
Tuesday, 23 March 2010
As you will have seen I have been taking a writer's break over the last week, doing lots of painting instead. Yesterday I came back with a BANG and put up a long posting about theatre and laughter, in Germany, in cerebral palsy and in Conductive Education.
I loved doing it and it took me three hours but I made the dreadful mistake of writing it directly into Blogger!
Up it went into Cyberspace and off I went to bed, happier then I have been for ages with blogging!
My map and its little blue dots (you) show that you my readers soon spotted it and came to look. I do so hope that you enjoyed it too.
I have just discovered that it has vanished! It is simply not there, it is as if it had never been. I could scream, it's enough to put me off blogging for life. Even the title of the picture and the spelling mistakes have gone!
I have just one hope of getting it back and putting it up there again, that is if one of my readers for some reasons stored it to read later, and took a copy electronically or on paper.
If anyone can help me, please put a comment at the end of this posting, or email me at firstname.lastname@example.org
Monday, 22 March 2010
It seems like an age ago since going home late one evening on the tram I last wrote a list of the highlights of my just-finishing week.
It had been a really difficult few weeks, always working alone, and I had done this list-writing exercise really to tell myself what I had achieved despite feeling totally inadequate.
I discovered that the list was quite long considering, and the super, top-of-the-list sucesses had both been with the same young boy, a four-year-old lad who is, sad to say in my opiniony, on the brink of having the word "autist“ written all over his personal papers.
"Autistic?" Daft! (the very idea, not the child)
I taught this child to ride his very first and very new three-wheeler bike. It took us fifteen minutes at the most.
I also showed him how to build a very high tower out of Duplo bricks. That’s Lego for little hands.
It was the very first time that this child had put more than two bricks together at one sitting. He didn’t throw one of the thirty-two bricks that we used on the floor, and he didn’t fling his hands around for a whole hour.
That is an awful lot of successes in one hour.
I am tearing my hair out about the so-called "diagnosis" that is sadly about to be made official. I am so worried that even more of the people who this child comes in to contact with will write him off, not even try, because they know that "autists can’t do that“!
I have already experienced such reactions from people who have only heard that this is what might be in the pipeline, so I do not think I am exaggerating my fears.
I am crying out to have him with me for just an hour every day. Look at what we have already achieved in that one hour:
- riding a bike with a big cheesey grin
- building a tower with another cheesey grin
- all without waving hands or things flying on to the floor.
In the previous week I witnessed a whole bunch of the school taxi-drivers who deliver our children, watch in awe as the same child, under a bit of directing from me, slowly but surely took off his coat, his scarf, his hat and finally his shoes and gave them to his driver to put away for him.
I had not taught him how to do these things. He had never done any of them on his own before in Kindergarten, but somehow he just knew how to do them all. He is after all four years old and has nothing wrong with his arms and fingers.
What I did was to expect him to do them all, and of course to realise in the first place that he could if he wanted to. With lots of encouragement to try and to find out what he has recently discovered, that he has an awful lot of hidden talents and skills.
As you can imagine he has been smiling like the Cheshire Cat quite often.
The next skill that he is trying hard to conquer is learning how to use his first wheelchair, with care! He is driving like a wild thing in it at the moment when he is left to his own devices. He has never been able to move around under his own steam before, except by crawling on the floor. He is discovering the thrill of speed, the wind in his hair and doing wheelies!
My motivation to write this: the Duplo tower and this:
I have very high expectations of my little lad with the new bike!
Saturday, 20 March 2010
Wednesday, 17 March 2010
Monday, 15 March 2010
Sunday, 14 March 2010
Friday, 12 March 2010
A few days ago I read how Norman Perrin was resisting the temptation of rejoicing in the wonders of being a grandfather.
I wish that he hadn’t resisted. He rejoiced once before about this role that he so much enjoys and I had found it a joy to read.
I won’t ever be able to rejoice in the wonders of being a grandmother, as I do not have any children.
But my sister has two children, twins, and on 10.03.10 one of these, my nephew, became a Dad. That makes me a great-auntie and I find it exactly that, great!
I want to be just the sort of great-auntie that I had as a child. My Grandma had four sisters who were all really weird and wonderful, and all slightly loopy! That sound just about the role I might be able to fill without much practice!
You will have to excuse me if I do not resist the temptation as well as Norman did, and just now and then rejoice in this new role that I have been given.
It is a nice feeling to have a baby in the family again.
Great-granddad is of course as delighted as I am and was one of the first on the scene to see the few-hours-old Aimee. I shall have to make do, until I take a break from work, with lots of photos.
Monday, 8 March 2010
Learning to say no
I have been gathering my thoughts on speaking out, finding a voice, saying Yes and saying No, for about two years now. If I don’t start writing it soon it will be the same as the food blog. It will stay hidden in notebooks and USB sticks for another two years, getting lost, deeper and deeper in the old files.
Finding my voice
Two things happened last week to jerk me into action on this one.
So I will start this series with stories about children and young adult clients who are learning to find their voices, learning to say what is on their minds, learning to say Yes and No, or That‘s enough.
There was a new member in our worker’s group last week and as always the group welcomed him with open arms.
You know that‘s what I like most about this group, and the stroke group, they are always game to try something new, always welcoming to new members, even though they know that for a while it will make things a bit harder, with less time for themselves in the group.
The stroke group was different. Earlier the members of the group were older and more nervous about anything new. But over the years the older members got used to it, inspired by the enthusiasm and confidence of the younger ones.
Now it is adventure after adventure, and a change is welcomed with open arms, even when this means a new member of the group who uses up some of their valuable time.
So on Tuesday the worker’s group welcomed with open arms our newest member.
It is funny how life sometimes seems to turn full circle but it is really spiralling on its way upwards.
The young man who joined the group has just arrived in Nürnberg. He is twenty-four years old. Many years ago he was attending the group that I was working in as a student at the Petö Institute.
It isn’t a coincidence that he has landed up here, he came because he knew that there would be an opportunity for him to continue with his conductive upbringing. It is a coincidence, however, that we knew each other. Of course we didn’t recognise each other at first, he has forgotten most of what happened there in Budapest when he was just four years old. But I remember working with him, I remember what he looked like twenty years ago.
He hasn’t been part of a conductive group for six years but it wasn’t difficult for him to get stuck in again. He told me what he needed and how I could help him and we all got on with our work.
In the bits-in-between we were all thrilled that along with new a client new subjects for discussion were cropping up.
We talked about the love of riding around in fast electric wheelchairs, trying out the VW trikes at the summer Fest, or pedalling really fast on bicycles. We discussed the fact that it seems to be the athetoid clients amongst us who love speed the most.
Could it be that they enjoy the freedom of movement? Could it be that the thrill of the speed stops the jerks, lets the muscles rest? We shill have to do some research!
This was the light-hearted subject that we touched on.
On a more serious note we talked about the need for clients to tell their carers and therapists how and how much they are allowed to touch them. This is not something that gets broached very often, it seems to be one of those taboo subjects. It certainly isn’t taboo in my groups though. And with a new client amongst us it was top of the list.
It is something that I consider very important and I insist that my clients speak up when something doesn’t suit. I encourage them to talk about what it is like for them to have relative strangers always intimately touching their bodies.
I encourage my clients to speak up with a loud and confident voice. Their own voice. The voice that is allowed to tell the world what they want, and what they don’t want.
Their bodies are their ow. They are the ones who know and need to say what goes, and what doesn’t. They have to learn to say “Hang on a minute that’s not OK”, or “That hurts”, or to explain that sometimes things work better if done differently.
No one will know that there is a problem if the clients don’t speak out. We practise this in the group by having lots of discussions and opportunities where choices can be made, when preferences can be voiced.
A real eye-opening time
In 1997 I broke my wrist badly. It was pinned in four places which meant that I wasn’t working as a conductor for a long time. I had a lot of physiotherapy at this time to try to get it moving again, all the stuff I couldn’t do myself, single-handed.
I was amazed how little thought some therapists gave to the closeness of their bodies to the client’s, and did not seem to realise that this closeness was often uncomfortable for the client.
I must admit that I didn’t much enjoy having a complete stranger’s chest in my face while my wrist was being manipulated.
I didn’t enjoy being touched by strangers at all. I found it all rather difficult. Daily life was suddenly difficult, with me having only one arm and pain in the other, and my partner with two fairly good arms but legs that needed a wheelchair. I discovered how hard it can be to be tough and shout in a confident voice, when really in need of assistance but at the same time not happy with what is happening to you.
I only had to put up with it for a few months others have to do it for their whole lives. But even so I found it almost impossible to find my voice to say “Please, take a step back, you are too close for comfort.“
It was just as hard to say “Ouch, you are hurting me“, and I found it absolutely impossible to say "I don’t feel like having a stranger so close to me today“.
I did however learn a great deal and I did sometimes manage to say what I felt.
I try to teach my clients, especially the teenagers and young adults who are so conscious of how they look and are so unsure of how to behave in many situations.
I have been planning a long article for a long time, years in fact, called “Awkwardness and saying No“.
This posting deals with the first sort of saying No and the first sort of awkwardness. It is about disabled youngsters finding their voices and the confidence to stand up for their rights and their wishes.
There are many more aspects of saying No and not only from the clients point of view but I thought it appropriate to begin with clients' learning to say no and our part as conductors in encouraging it because, this is what came up in my group last week.
As conductors it is a part of our job to show a disabled person how to make their voice heard in a way that notice is taken. Encourage a voice that exudes confidence and respect. We need to teach at the same time the importance of posture and facial expression and the need for eye- contact so that the voice will be heard with full impact and not made invisible by a body shrinking into a wheelchair.
We have to discourage our clients from believing that they are invisible beings with no voice in the world. We need to discourage them from being dependent in all aspects of living, we must stop the ability to say No from being taken away, and encourage the ability to also say Yes.
It is out responsibility alongside parents, teachers, carers and therapists, to ensure that our clients are brought up knowing what they need, what they will allow. They need to learn how to ask for what they need and how to say how the help that they need should be given. Our clients need to learn that they don’t have to put up with anything that oversteps their personal space and wishes.
I wrote most of this posting in my notebook last week as I was walking home over the fields, my back bathed in sunshine from the most amazing sunset. I was thinking about the time with my worker’s group discussing saying No, and also about what had just happened minutes before, with two of my seven-year-olds. One I had accompanied to speech therapy last week, and her “Petö” friend who she has known for five years. These two littlies were sitting at the table sewing and chatting, the girl saying “Wow” each time that she hit the spot she was aiming for with her needle, the boy saying “Wow” every time that he understood what his friend was saying. Both of these “Wow” events happened quite often.
He was actually talking incessantly as always, sometimes taking the Mickey out of us both and sometimes getting on little girl’s nerves! Mine were holding out. It sometimes takes a naughty little boy to help a little girl find her voice, it also takes a lot of hard work and intensive speech therapy and much determination.
The athetoid little girl said suddenly, loud and clear and confidently “Leave off!“
I was surprised, but little boy was shocked. He looked at me and opened his eyes and mouth wide before saying in a softer than normal voice “She told me to leave off."
He did stop the teasing, for a few minutes anyway, and that gave little girl the confidence to say it again whenever she feels it necessary. She now knows that she will be understood.
Little girl is finding her voice, little boy is listening
These two are both developing in so many ways. Little boy is learning to listen, discovering how his behaviour affects others, he is learning to be patient and to do things just a little bit more slowly if he wants to do them with his friend.
She has learnt to say No. She had to repeat it several times before real notice was taken, but it worked. Her friend is delighted, he is discovering a new side to her.
These two have grown so much recently, not only in height. They really are schoolchildren, socialising now in a new and exciting world. They are more aware of each other, they enjoy each other and recognise new traits in the other’s personality.
They are slowly and surely making their own way in the world and learning how to use their ever-stronger voices.
They are learning at a very young age how to say No and how to say Yes.
It is so interesting how some chores are not chores at all. Some have become activities that I have learnt and at the same time learnt to love. Other chores are not chores when done in other people's houses.
The rest, though, remain chores wherever they are done!
I have just been carrying out one of those chores that I love and I was wondering why this is.
The snow had almost gone. It had been a bit drizzly and wet for two days but I thought no longer is there the need for warm, water-proof snow-boots. Leather shoes and boots have taken their places again on the shoe rack, after not being worn for two whole months. Even so, although the snow was melting away, the grit is still around and there is still a danger that, when it rains, the salt will leave white lines on leather shoes.
Action was needed
Out came the shoe-polishing kit, filled to overflowing with an array of rags and many brushes in all sizes, with tins of polish in ever colour imaginable, even though most of my shoes are now black!
I covered the floor in newspaper, then I fetched a cushion and I plonked myself on it in my usual place in the middle of the hall, ready for a shoe-cleaning marathon.
I love cleaning shoes. I clean shoes with gusto, with spit and polish and with elbow grease. I love it, I have loved it since I was a very small child.
I learnt to love it because I did it with my Dad and he loved it. We cleaned his work shoes together every single day, rubbing and brushing until I could see my face in them. They would be covered in coal dust when he got home, so the difference between before and after was great and it was very satisfying “work”.
My Dad and I would then do my school shoes, my sister’s school shoes and last but not least my Mum’s shoes.
While we polished I would listen to stories, sometimes about shoes, mostly about trains and what there was to see en route from Norwich to London and from Norwich to the Norfolk coast. I soon knew what to do when a sheep was stuck on its back – stop the train and turn it over! I learnt what to do when a pheasant was hanging on the front of the train – take it home and eat it! I learnt about the single roads and leaning out of the window to pass the hoop to the driver coming in the opposite direction. I discovered where the heronry was and where the glow-worms could be seen. I knew where the flamingo stood and where the swan was mourning her mate. I knew where the cows always got out of their meadow on to the line, and I knew which farmers were friendly and which were not. I almost personally knew the lady who always stood at the gate crossing every day and waved.
I heard about dead man's handles, and frying breakfast on the coal shovel, about learning the road, and speed restrictions. I knew in great detail the comings and going of the mess rooms in Thorpe, Norwich and Liverpool Street, London. I knew who made the best cup of tea and who was best at playing cards.
I knew quite a lot really for a little girl who loved cleaning boots .
When I was about thirteen I had the best pair of chestnut brown shoes that one could wish for, for polishing that is. They came up with the toes looking like brand new conkers fresh out of the shell. By this time if Dad’s shift didn’t coincide with school then I became the main shoe-polisher in the family, I was on shoe-polishing duty. I don’t think that my sister has polished a pair of shoes in her life.
I didn’t mind doing it alone as I loved to be able to shine them as well as Dad could, but I missed the stories. I still clean my shoes when I am home at the same time as my Dad cleans his, just for the company and his stories.
This evening, as I rubbed and brushed and polished and spat, I composed this posting for my blog.
There are other chores that I learnt to love.
Like weeding gardens
That’s because of the stories too, stories about life that Mum and I told to each other when I was home from college for the holidays, while weeding next to each other in her garden. I still tell myself stories whenever I weed, in whoever's garden!
That’s the other chore that I enjoy, another one with a story attached to it. When I was tiny my rather loopy Great Auntie Winnie would come to help Mum with the ironing every Monday evening. She would iron and I would watch, and she would tell me crazy stories about her earlier life in Northern Ireland. I got hooked on ironing!
In my twenties when still in England I ironed for the old lady next door, I did it while listening to the Tuesday play on BBC Radio 4. There were not such loopy stories on the BBC but they were still stories
Sunday, 7 March 2010
Yesterday afternoon I took myself off to the art shop in the middle of the city. Normally I would walk but it was bitterly cold so I went by tram and U-Bahn.
I had a shopping list
I bought everything that was on, the and of course a lot more.
I haven’t been painting much over the past year but started again very recently. So it is also a long time since I went into town especially to go to the art shop. Normally town is a place that I avoid on a Saturday. Actually I avoid the whole city on Saturdays as I do not like the bustling crowds.
Today there were no crowds. The Club were not playing football, that always makes a big difference and the bitter weather kept people cosy indoors too. The art shop was surprisingly empty and there were lots of assistants available and willing to help.
On my list for the art shop were some gold and silver ink, gold and silver crayons, some metallic acrylic paints, and some gold powder. I also needed cadmium-red, alizarin-crimson, and cobalt-green half-pans of watercolour. These are tiny and expensive, and gorgeous to look at. I like these little half-pans even more when they are clean and shining in the paint tin before use, they look almost good enough to eat!
Added to these in my basket was a 32 x 24 cm pad of 125-lbs, rough, watercolour paper to continue the series that I have began painting in 2010. Luckily I found some almost identical in texture and colour as the paper that I have just finished, that I had bought in the UK.
That wasn’t all that I put in my shopping basket
I found two pairs of scissors that I think may be perfect for the next stages in learning to cut for my athetoid littlie.
I found a nice fold-out, concertina-type card that I will use to create something appropriate for my grand-niece/nephew when it at last arrives on the scene (due last Sunday).
I found some blank do-it-yourself memory cards that I will use at work with the children, or maybe even for myself, and I bought some heart-shaped beer-mats for guests to paint at a friend's wedding, and that was it.
I stuck my hands in my pockets and walked, eyes facing forwards not to be tempted by the bits and pieces strategically placed like the chocolates in the supermarkets, to the cashier!
I was very pleased with my purchases and impressed by how restrained I had been considering the lovely things that I had seen and touched. I love art shops, I would love to have the opportunity to do one of those shopping trolley runs like they used to do years ago. Five minutes to fill the trolley with paints and brushes, easel and canvases, pads of paper and, my biggest weakness of all, sketch-books!
I can dream and, until the dream comes true, I can keep my hands in my pockets.
With my rucksack full of goodies I walked ithrough the Siberian wind back towards the U-Bahn. On the way I noticed that there was a sale on at one of my two favourite, affordable clothes shops. Actually the one that I spotted yesterday is affordable only when there is a sale on!
I had been looking at my wardrobe recently and had decided that in the next months I should purchase a pair of black trousers if I found any going cheap. There they were, along with a cheap shirt, not exciting but warm. I also came across a lightweight, black, long, thin-wool jacket/ cardigan, ideal to throw in my suitcase in spring and autumn, even in summer if I am visiting the UK!
I didn’t buy anything fancy, all very sensible things that I had decided that I needed at some time or other. Here they all were in one shop. That is the way I like to go shopping, quick and painless and no crowds.
Although the art shop was the more exciting store, the temptation had been just as strong in the clothes shop.
The assistant was about the same age as me, and had lots of time as the shop was almost empty and spontaneously began bringing me things to try on. I love it when this happens because I am just as much an opsimath when it comes to clothes, as I am with books.
I enjoy it very much when women of my own age feel happy to advise me. This lady was really good at it, she brought me lots of things that I would really have enjoyed wearing but would never have chosen for myself. I would have loved to have bought them all. I probably would have bought them all if I didn’t want to travel to Hong Kong this year and desperately need a new laptop.
I resisted here too, put all but the three sensible items back on the shelf, and walked to the cashier, coincidently spending exactly the same in both shops!
Two years old today
At two years old one of my little clients would still be in the parent-and-child group with Mum, both of them learning together as they set off on their chosen conductive-upbringing path in life.
My blog and I have been learning just like that over the past two years. we have tentatively been moving on step by step, at times motivating ourselves but often very much appreciating the motivation provided by the group that we belong to: the conductive blogosphere group!
Without this group, making themselves known by the appearance of little purple dots on my map, by the occasional comments and by regular emails, I may not have reached almost four-hundred and forty postings in twenty-four months.
I must admit I was aiming for the five-hundred mark, but that's all right, aiming high is what I advise all my conductive families to do!
I am quite happy with my four-hundred-and-thirty-seven postings. I hope that my readers are happy too.
Saturday, 6 March 2010
There is another interesting article in this week's Weekly Guardian, this time in the Weekly Review.
Chris Arnot writes, in "Pictures of health", about a set of books used for encouraging conversation and to wake up memories.
The article describes books that where first developed by Helen Bates, architect and illustrator, to encourage conversation between her ten-year old son and her mother who was developing demetia.
It describes much the same things that I do in my stroke and multiple sclerosis groups to encourage delving deep into locked-away memories, and then to talk about them.
I use photographs, paintings and series of images to develop communication skills and use of more abstract thinking, and to encourage the use of the imagination.
The project written about in the Guardian Weekly and now put in to action in six care homes in England, is called "Pictures to share".
Chris Arnot writes that this project is:
" a combination of striking images coupled with a few lines of large-print text to stimulate memories of past pleasures and experiences. One of the books is called Beside the Seaside, hence the importation of beach-balls and sand.
Other titles include In the Garden, Women's Work, A Sporting Life and A Funny Old World."
I looked them up in the Internet and discovered that there are many more titles. You can even flip through the pages to make choosing your title easier.
While I was browsing around this site I discovered that under "resources" on the left-hand side of the page there were links to You Tube. It is hoped that these selected clips will stimulate conversations and spark the memories of the clients, just as the books do.
Here on the You Tube links I found my old favourite, Louis Armstrong, and it is here that I found him singing the title of the posting: "We have all the time in the world"
I was sorting through my files the other day, the ones containing all the pictures that I have collected over the years, all glued on to separate pieces of card and kept in individual plastic sleeves. I was looking for appropriate images to use with my new stroke client.
It seems that yet again I may have missed the boat, but on the other hand maybe I have just been given more reassurance that even without making it on to the boat I am on the right track.
What I have been using with my clients for years has popped up its head in a project in care homes in Coventry, in central England.
I will not be investing in any of these very nice looking books, although I am very interested to hear from anyone who is using them in their work.
I will stick to the hand-made versions though, if there is at some time a bit of spare cash in the pot, I may be able to put my pictures into little books instead of being stuck on separate pieces of card.
Guardian Weekly -
Pictures to share-