Friendship

 "Making friends"

(That is me being silly with my ice-cream)

"Old Friends"
(That is my Grandma with the gloves and hat, just how I go out nowadays!)

My life 

Sometimes I just want to sit down and read the papers. As I only get one newspaper a week that arrives on Saturday mornings usually I resort to reading the news online, often just before bed with a cup of tea.

As I have been at home all day today I am finished with all the jobs and sitting down with a cuppa much earlier.

Often when I read the news my thoughts stray back to work related subjects, sometimes things crop up that I feel necessitate a bit of blogging.

This just happened. Two articles appeared on the screen, one after the other, that are all about a subject that comes up often in my work.

Making friends

Teenagers with disabilities talk to me about getting out and about and meeting people. Adults tell me too about the difficulties they have socialising. Not just difficulties with accessibility, but with the availability of suitable transport and with the behaviour shown towards them because of their disabilities.

Here on the BBC website I read of more such experiences and of one charity’s attempts to ease the difficulties for some of these people:

http://news.bbc.co.uk/newsbeat/hi/newsbeat/newsid_8338000/8338617.stm

http://www.bbc.co.uk/1xtra/tx/documentaries/willing_and_able.shtml

http://www.bbc.co.uk/news/uk-england-berkshire-15557244

Young “Petö” adults

There are now several young people living at the sheltered housing complex where our conductive centre is situated who were amongst our first “Petö” children, as they call themselves.

It is these young adults who speak to me about their feeling of isolation and their wishes to make non-disabled friends.

We encourage these youngsters to have high expectations and to have ambitions and most of them develop them.  How do we help them to live with them though?

It is so difficult for us to keep on providing what these people so rightly wish for themselves. Sometimes all I can offer is a listening ear and suggest who it is best to speak to about a specific problem. At other times I can offer a bit more, but I have other commitments and other work to do and the day is only so long.

Independent living, or is it?

Once these youngsters have left home they no longer have their parents fighting to provide them with what we take for granted as our normal social life. They realise that going to the disco or even organising a trip to a cinema is not that easy. Especially when the accessible transport runs only until 10.30!

These young people not only face problems making relationships they have added problems getting to places where they can even make an attempt at it.

A first step?

Recently one young lady and I came up with an idea.  She will start to make enquiries and will ask the bus company whether the night-liner bus  can do a re-route of just one hundred-yards, so whenever some of our youngsters plucks up enough courage to go-out-on-the-town alone on Saturday night so they can get back home!

We will see what response she gets so we can determine if she needs help in her cause from another source.

A walking success

Here is the best toy that I have ever discovered

If I had a conductive toy-list this would be near the top

It is a Laufrad, a walking bike, that I recommended recently to a family with a disabled child and it is a great success.

The child is a small eight-year-old and the XL version is just perfect for her, now put together on the lowest settings so there is room to grow. I discovered the bike in a catalogue given to me at a local shop, I then showed it to her mum who gave her approval and ordered it, all within a few days. The very next day after making the order we got a phone call. not only to say that it had arrived at the shop but that it was assembled and ready for collection.

So collected it was, and all in the space of four days a bike was found, ordered, picked up, and our Little Princess can now cycle home on her own. Well actually not quite cycling but walking home on her bike!

It is fourteen months since Little Princess became my first ever child-client to walk home on her own. She progressed from using a rolator to a tricycle quite quickly and now she is using her Laufrad. I cannot help but wonder what she will be doing next.

Made in Germany

The bike, a trike actually, is made in Germany as many toys always used to be, by Pedalo:

http://pedalo.poeppelshop.info/Laufraeder/Pedo-bike--S--air-XL---Lauf-3-Rad.html

We, the conductors here in Nürnberg, are all are absolutely thrilled with it. The child, who now owns one of these “walking-bikes”, has athetoid cerebral palsy. She can walk a very wobbly ten paces alone, she has very good trunk control and sits on a stool very safely. When she has to, as she does when using this bike, she can grasp well with both hands, and she has very good orientation and coordination skills. For example, she knew immediately when she got on to it that, if she scooted with one leg, then she would turn in as tight a circle as possible.

Her Mum was brilliant in the moment that she gave this bike to her daughter. She just picked her child up. plonked her on the bike and let her get on with trying it out! She had absolutely no doubts that she could do it, neither did the child or the conductors!

Highly recommended

We all thoroughly recommend it.

PS

Many thanks go to the man at:

http://www.avanti-mobil.de/

for the great service. Your advice, the ordering and super-fast assembly of the bike are all very much appreciated.

They just keep coming back for more

 "That green and pleasant land again"

by Susie Mallett, May 2011

I have experienced again and again how, as they get older, children begin to choose Conductive Education for themselves. As our young clients reach adulthood, many return to us, even after a break from conductive sessions for many years. They have been living conductively without input from conductors, but often an operation, a deterioration of movement or simply the wish to be more active, brings some clients returning and asking for our help.

In the summer I had a seventeen-year old lad phone me, after an operation on his legs, asking whether I could give him a week of my time in his summer holiday, and more recently, in the autumn half-term holiday, a thirteen-year-old boy asked his mum to phone me to arrange a week following a very successful operation on his arm.

The older boy had not been with us for about eight years after he moved away to boarding-school. The younger boy was with us regularly until he started high school, returning for a time after a foot operation and now after one on his arm.

The young lad was with me last week. He has grown as big as me, he has a deep voice already but, although he looks like a young man he still wanted to sing all the songs that went with all the actions, and when we did not sing he whistled while he worked.

Both these experiences were eye-opening

These children turning into teenagers have been brought up conductively. They have not taken part in conductive sessions all of their lives but they have experienced conductive pedagogic enough to have developed a problem solving, independent thinking personality. This is what I recognise in the children who return to me. It is not how well they can move, some of them can talk no steps unaided, that tells me that they have been in conductive groups, it is how they think and how there are that has developed from their conductive lifestyle.

Yes, I know that if you ask a teenager who attended lots of conductive sessions as a child to roll over you can usually recognise the “conductive roll”. If you ask teenagers to walk unaided across a room they will often immediately clasp their hands. But it is the way they are as people, how their personalities have developed, how they want to succeed and be involved in life, that for me shows that not only have they attended conductive sessions but they have lived a conductive lifestyle.

It is a joy to work with these returning independent souls. I hope to meet many more of them in the future. Our door is always open.

Life

"Autumn 2011" by Susie Mallett

I was at a meeting all day yesterday and, although the autumn sun was shining outside, this was interesting enough for me not to be longing to be out there walking along the riverbank or cycling through the woods.

One of the subjects that came up was how to provide the opportunity for conductive living to adults who had lived conductively with their families for most of their lives, as children, and wish to continue to do so.

Over a cup of coffee on this glorious, autumnal Sunday I was directed to this link by Norman Perrin:

http://www.dailymail.co.uk/debate/article-2049382/What-disabled-girl-taught-life.html#ixzz1arTPe1UT

It is not only in the conductive world, it is also not only in Germany, that children, who have discovered a satisfactory lifestyle that suits their needs at the moment, on becoming adults have to compromise, have to make do with less than adequate, become less independent and therefore more dependent, and begin again the fight against the authorities once for their right to enjoy life to the full.

How strong can families be? 

How long can families go on giving their now adult children the help that they need in this fight? 

What will it take to change the world out there, at least enough for parents to be sure that there are others to take up this fight when they themselves can no longer do it?

These families should no longer have to rely on that special social-worker or the chance meeting with a conductor, that perhaps helps to make truggling through life easier for them. How long will it be until anyone who has slightly different needs to the rest of us automatically receives the care and assistance necessary without having to fill in the same endless forms or answer the same questions a hundred times?

When will coming-of-age for a young adult with disabilities mean the same as it does for an eighteen-year old who is not disabled – the opening of doors to a wider world and not the slamming of them in their faces.

In the relatively short time since I became a conductor, medical care has improved so much that the population now includes many more elderly members with disabilities and many more at the other end of the spectrum, those born with disabilities. Children who will one day be disabled adults.

I have seen little change in provision for these members of our society. Yes, the streets have become more accessible, the public transport too, but I do not think there is as much of an increase in their usage as there should be. The infra-structure is still missing, there is still no way to make use of those improvements when the money is not there and the carers are not available to help.

I did not leave the meeting yesterday with the air of despondency that I often have about conductive education's becoming established in the world of learning. I came away with a sadness and questioning why it should be that all members of our society with a disability of any kind have an endless struggle to achieve what it is that they wish for themselves in their lives. Whether it is a wish to live together in a house with friends, to attend a mainstream school with an assistant, to study for a master’s degree, to continue living conductively or to own an electric wheelchair, it is a continuous round of fighting, form-filling and questions and answers. 

We find ourselves going down the same paths year after year, with the same officials, with the same questions, always for the next children or adults, nothing changes, no wheels get oiled through experiences. 

Caring is not always enough

A friend wrote to me today to thank me for helping her with something. In her mail she wrote:

“I can see that you care not only about CE but about people too, which in our profession is not a disadvantage.”

What would the world for our clients with disability be like if there were not members of all the professions who work with them who are able and willing to care about people and not just do a job?

But these families, children, adults both young and old, need more than professionals who care. They need the backing of the powers-that-be too. Until they get this we shall all go on caring.

Notes 

Norman Perrin - on facebook 

http://www.facebook.com/norman.perrin

 

PS

After I had read the newspaper article and written my ramble above I went back for a re-read and went on to read the comments.

There I read about a problem that crops up again and again in my work here in Germany. Children become adults and provision for these young adults can be less than adequate, so many parents decide that they will be the carers of their adult-children. Care allowance is available to them. Then when these parents reach retirement age what happens next? They continue to do the caring but the allowance is no longer available. I read that the same happens in the UK. What a crazy world we live in, but can it really be so uncaring?

Conductive upbringing and more dilemmas

"Geraniums on Edith Cavell's grave", by Susie Mallett

Norwich Cathedral, 11th September 2011

Indecision

Flip-flopping

Eating humble-pie

Going to someone with tail between the legs

“The procedure is safe and quick, but it is still not fair.  My son fell asleep after crying for a long time about how scared he was and asked a million times how much it will hurt.  He doesn’t deserve that. It may be the right thing to do, it could change his life, but it kind of sucks anyway.”

The parent who wrote the paragraph above had just decided, against her original wishes, to go ahead with an operation for her child.

Read the full story here on this always very good blog:

http://wearingcostumes.wordpress.com/2011/09/22/perky-for-percs/

PS to “A cyberspace conversation with a conductive parent”

"North Norfolk undulations"  
by Susie Mallett September 2011

Just my part of a conversation as a conductor-carer

You know, when I was a carer and someone asked "And how are you?", there was a feeling inside me that I cannot describe. A dilemma, not knowing what to say.

As a carer I never felt it all right just to go off, although my client’s family helped out and I was able to carry out my work in families, occasionally working away from home for a week at a time.

While away I was always sort of worried and felt responsible, and could never completely concentrate one-hundred percent on my work, or on myself.

I never thought about myself first and what I wanted to do, even when I knew that everything was all right at home. I suppose that I felt guilty.

Not thinking about my own needs did not often matter to me, I thought that it was often better to have to think about someone else, but in fact it really was a relief when someone asked “How are you?”, thus allowing me not always to feel smiley and even occasionally to tell someone the truth that I was not managing too well that day if this was indeed the case.

The only person who ever asked me this question was my partner’s mother, I suppose that she knew. Most other people gave me the feeling, as mentioned in A cyberspace conversation with a conductive parent that it is just not done to get overwhelmed by it all and to wish for even five minutes alone:

http://www.susie-mallett.com/2011/09/cyberspace-conversation-with-conductive.html

This was when I got into the habit of using the nights to feel by myself, to be uninterrupted with my own thoughts and to do something like painting or writing, something just for me. And sometimes the lady who knew invited my client out for the day so that I had the house all to myself for hours!

A cyberspace conversation with a conductive parent

"My worries" by SB

(Still have a hitch in computer please view this picture,

painted by a twenty-one-year-old client of mine, from the left-hand side!)

This is how it went

That holiday destination sounds like a lovely place.

Had a very happy week, just the two of us.

That must feel like a dream come true.

I know how much you love your child but it must be lovely to just be the two of you for a whole week.

Absolutely.

I think some people feel ashamed to say that they enjoy not being with their disabled children, but I think that this comes more from the attitudes and reactions of other people rather than from within the families themselves. It is all part of a conductor’s job, to help families feel OK about this.

There is a huge gap in the notion of “transitions“– which focus on the individual child/child-adult and not on the family/parents. I would like to see so much more work done with parents, not just their understanding of CP/CE, nor even the struggles they face, but also on “letting go”.

How I wish that we as parents could have that help as we face “letting go“ of our adult child into her own accommodation soon.

I have done a lot of work with the partners of people with MS. They are often shocked when I asked them: “And how are you?” They are not used to it.

But just by discussing the places where they could do with some assistance and where they think progress could be made it already begins to feel like a conductive lifestyle is emerging.

Yes, I like that.

Have you at last found somewhere for your adult-child?

Yes we have.

All being well.

Is it what was wanted, with best friends?

Three of them in a bungalow. What was wanted? I hope so, I do hope so.

We cannot know until it is tried

It is the same with us all. We do not know either how we can live until we try it. It is just easier without a disability to give something else a try if at first it does not succeed.

It is the same for us all, “becoming” very conductive.

Your child will have lots of people helping to make it work but what about you two (parents), who will help you?

Good question.

Not taboo but part of the job

How many of us have had conversations like this one? How many of us have had conversations like this that we remember for a long time because they had a huge impact on us?

I actually wrote this one down because I did not want to forget it and I then realised that I wanted to share it with other people so I sought permission to do so.

It should not be taboo to ask partners of very sick people “And how are you?”, but I know from the reactions that I have had over the years when I have asked this that it is a question that is rarely asked. I know also from personal experience as a carer and partner of someone with MS that I was only ever asked this question, now and then, by one person and that it made me feel good just being asked. Just knowing that someone knew that it was not easy was enough to help solve some problems.

Parents and carers and partners all need to be reassured that it is all right and quite usual to be feeling how they feel. They need to be encouraged to ask questions and even to ask for assistance. These people are often so worried because they believe that it is just not acceptable when caring for someone with a disability to be angry, upset or frustrated or to wish for time alone or with friends. It is just not done to ask for help or to say: “I do not feel like I am doing well at all”.

Of course there are conductors out there who are already offering families help in learning how to “let go”, helping families to accept the fact that they are allowed to wish for time alone, and offering help to research for ways for it all  to be possible.

I have hopes that with the formation of many more small conductive centres and with more self-employed conductors developing a different way of working, developing a long-term clientele, there will be more scope for working within the home environment, so that conductors can give more thought to the wider questions involved in living with a disability in the family and to approach the matter of offering assistance to the parents, carers, siblings and partners as touched on in the conversation above.

Learning to swim,

"The north sea at Winterton, Norfolk"

by Susie Mallett, May 2011

Determined and motivated and having fun

A video appeared on Facebook recently that showed children from the Petö Institute learning to swim. They really looked like they were having so much fun and where thrilled that they could move around in the water. In fact they looked just like most children do when they are learning to swim, so determined to succeed, so highly motivated.

http://www.youtube.com/watch?v=kmMsxicG4NQ&feature=player_embedded

I come from a part of England and lived the sort of childhood that made it too dangerous not to learn to swim. I grew up in the east coastal region that includes the Norfolk Broads, a network of rivers and gravel pits and man-made channels that were used to transport the building material to Norwich for its cathedral and more recently for its shopping mall.

Our family activities included river and sea fishing and the whole of the summer holidays spent at the seaside.

I learnt to swim in much the same way as these children with a very strong hand! The hand was either my Dad’s or his brother’s, my Uncle’s. Most of this learning took place in the North Sea, and my sister, my cousin and I all had to learn to swim quickly if we wanted to join in with the family fun!

It was too dangerous to have three children on the beach as often as we were if we could not swim.

I remember that movement that I saw in the video, my Dad did it in almost exactly the same way, a tiny nip on the back of the costume to pull my bum and legs up. And there was that hand just under my tummy like the rings around the children.

We were not allowed to take any inflatable toys into the sea, only arm-bands were allowed before we learnt to swim, the wind was always to strong we would have been carried away on anything that floated.

My Dad and my Uncle learnt to swim in the local river where he spent many hours with his friends. At about fourteen years of age he rescued his drowning ten-years-younger brother and then immediately set about teaching him to swim, so we children were not his first pupils in the water.

I am sure that when I show that film to my Dad he will not be astounded or amazed. It will make him smile for sure and he will think it is just common sense, just more children who must learn to swim.

I am glad that my Dad brought me up. It was the same with the bike. The same technique was used, tough love.

We had to learn to ride a bike we had to get to school and back. I had to know how to mend a puncture he would not always be there.

He taught me everything in the same way as he taught me swimming, he expected me to know how to do it, it was essential to life and he was patient and caring as he taught me.

He also taught me how to put up wall paper, paint a door, put up tiles and grout them, hammer in a nail with the right sort of hammer, put a plug on the end of an electric cable and change a fuse, and much more besides. And once by telephone in my first flat he talked me through putting up a shelf in the kitchen with only a hand drill! It stayed on the wall for several years.

Some people seek good education for their children, or as their career, because they did not get it themselves, but I think one of the reasons that I do what I do is because I got what I got from my Dad.

More recently he has taught me how to double-dig the garden, put the straw under the strawberries, fill, start and clean the petrol-powered lawnmower, and I know that later on, in my annual Indian summer holiday with him, he will be teaching me much more.



Conductive living, that’s the way to do it!

 "Under a big umbrella" by Susie Mallett 2010

Many strings in the orchestra…

…and many of the bows are playing together at last

With forty-two visits behind me, forty of them for conductive work, one to attend a grandma’s funeral and the other to go to a Tina Turner concert together, I have spent, all together, a total of over two years of days and nights helping this wonderful family to live conductively. We are now realizing that all that hard work has actually resulted in an amazing life-style for a severely disabled young man.

It has not only been with the family that I have been learning over the past fourteen years. The circle is very wide in this household, widening more and more as my client gets older, his experiences get richer and he reaches out into the world outside the home. 

A system of educating and learning has developed with friends and relatives, villagers, conductors, school teachers, occupational and physiotherapists, riding instructors, swimming teachers, and many others over the years joining in the development of my young client‘s conductive lifestyle.

Over the past six months this long journey of hard work seems to be drawing together so that everyone’s paths have come closer together, converging sometimes showing us that many long term aims have been reached. New wishes and ambitions like snorkeling in Egypt, going on holiday in Australia with his sister, meeting a nice girlfriend, and going on dates in the nearby town are all now the very realistic goals. Just thinking about past achievements and the newly opened up horizon brings a tear to my eye. But still there are everyday hurdles to overcome before this developing independent life is an orthofunctional life where constant practice and reminders become just small nudges in the right direction.

Are you proud that I now work in the afternoons as hard as I do in the mornings?

This is what I was asked today after a visit to my client’s workplace. 

As strict as always I said:  “I am very proud that you travel to work alone on public transport, something that you have worked so hard to achieve over the past few years, but that you do your work both mornings and afternoon is what I expect from you, it is what you get paid to do.” 

There was a look of shock on his face. I do not think he was really expecting a yes from me because he knows me as well as I know him, but he did not expect quite what I said although he said in the end that he agreed.

Of course we all have praised his change in attitude and his ability to transform himself and adjust his behaviour so he can fit in well with his colleagues at work, but that he works all afternoon, as I told him, is what I, his group leader and his parents all expect from him.

High expectations

I sometimes wish that the expectations that my parents had for me were as high as this young man’s family have for him. As his group leader said this afternoon for someone with his diagnosis, athetoid cerebral palsy, he exceeds many expectations already. 

Later, when we were alone, I said to my client that he does not really exceed all expectations as we believe that he still has lots to learn and we are all here to help him, for example, to do all the things that the freedom of travelling by public transport alone now allows him access to. 

I spoke to the group leader at work of our hopes that one day all new experiences that come his way will become part of daily life and our client will just take them in his stride without too much guidance from the team around him.

The man about town

Today we were in the town taking the usual route back from work, changing buses in the market square. We had decided to have lunch in town but first of all to get a few jobs done that my client’s mother usually does for him.  I a leisurely ten minutes window shopping while my client walked down the cobbled street to the opticians to get his crooked glasses fixed. Something that needs doing quite often and will now be accomplished without his Mum’s help after visiting the fitness studio, before jumping on the next bus, on a Monday evening.

Please note that this was a wet and slippery cobbled street and that just a few years ago this young man could not walk once around the back garden unaided.

After getting the glasses fixed we went to the bank to use the money-machine. 

A couple of years ago, when my client was at college, he did a project about the difficulties that need to be overcome when “banking with a disability”.  He told me at the time about all the disadvantages that a group of wheelchair users and he, a walker with fine motor difficulties, had discovered when trying their hardest to get at their Euros. There were a lot of hurdles to be crossed. This group of teenagers wrote a report about it and sent it to the local bank and the city council offices.

The screen was hard to read from the angle that it is viewed from at wheelchair level and sometimes it was hard to see the numbers on the pad or to reach them when sitting. At some banks there was too little space in which to manoeuvre an electric wheelchair in order to get at the right angle to be able to use the machine, and often for my client with his wobbly fingers the time the machine allowed for transactions before spitting out the card was much too short. Sometimes the whole procedure must be repeated several times before reaching the required speed.

This is just what happened today. As my client did not need 50, 100 or 200 Euros but 120, he had to type in the amount himself and press several buttons to pass on to the next stage, he was a few seconds too slow and eventually he looked around for my help. We used the situation as yet another step in conductive learning as I pointed out that really he should not ask someone waiting in the queue behind him for help, we may run off with his card or his money, or indeed with both. 

So taking the matter into his own hands he looked around for help in the bank eventually announcing to the girl at the counter that he had a physical disability and that he sometimes needs help with the machine to get at his money. He also has a problem with his speech, but this young lady was brilliant and immediately understood the gist if not every word and kindly offered him any help that he needed.

I really did feel proud of him at that moment as I watched him playing the man-about-town and completing all his jobs. He went on to choose the café for our lunch where I treated him to mug of hot chocolate and hot cherries, ice cream and cream all piled up on a homemade a waffle, that he proceeded to eat alone with not a drop on him or on the table. That is quite a feat I can tell you, especially with the ice cream melting at top speed despite the autumn weather.

Plans over lunch

Over lunch my client and I had a wonderful conversation. We discussed our visit to his work place and made plans to improve on the successes already achieved. The waitress was impressed by my client’s efforts to be understood and a man in the corner having his lunch alone did not take his eyes of us. I wondered what he was thinking. I hope that he was as impressed as I am by the young man whose company I was in.

We had a pretty good start to our working week together and we are looking forward to finding out what we will discover next on our conductive journey together, a journey that we hope will last for at least another fourteen years. We already have plans for a three week “wellness break” together in 2013 and I think I know of just the conductor who could provide such a thing for us. So if you are reading this lets get the thinking caps on and start planning!

What a real pleasure it is to watch this life transforming before our eyes. It is lovely to experience this expansion of contacts in my client’s world and to be able to work with more and more of them conductively. 

Orchestrating this transformation together

There are two very important new elements at the moment. These are the monthly day-trips that my client makes alone on the bus to work with my conductor friend and the fact that for first time in his life my client has people helping him all day long at his place of work. These are people who as well as teaching him how to do specific a work, they also aim to develop his independence. They teach him how to deal with all that life throws at him as an adult, just like the rest of his contacts, therapists, friends and family do. They teach him how to react to disputes between workers, arguments between friends and just last month the group leader escorted my client every afternoon for ten days to the bus stop until he was convinced that he could get home on his own.  

It is not surprising that in most conversations that we have these days this man gets a mention. His belief in my client and his ability to adapt and change and develop new skills is helping so much to bring about huge transformations that make such a difference to this young man’s quality of life and to the whole family.

I am really looking forward to the next fourteen years, observing the expanding world and being part of helping it all to become conductive!