Let me draw you a story.

HuhhuH

When I am alone with a certain little boy he starts to talks to me instead of to himself. When he is with other children he rarely speaks directly to them but chatters on mainly for his own ears. When he is with me he calls my name, he asks me questions, and the continuous chatter to himself dies down as he communicates directly with me.

Sometimes I get treated to the most interesting stories. At the quiet time at the end of the day this week, we sat down as we talked and drew some pictures.

It is ghost and ghouls time of the year again and he told me some amazing stories as he drew his "I love Halloween" pictures.

The Halloween Green-Red Witch and the Ladybird.

The two white ghosts captured a lady bird and put it in a cage

The good, green-clothed witch wanted to help the ghosts at first but how can she be a good witch if she helps ghosts capture ladybirds? Oh no, for the witch to be good she would have to help the ladybird instead. But alas, at the last minute the ghosts put a good-witch shield around the darker- than-night house where the ladybird would be taken in the cage on wheels to be imprisoned.

The ghosts could get into the house as they could vanish into thin air but the green-clothed witch could not.

The poor ladybird would have to remain in the house until he was nothing but bones.

All the time the young lad was drawing his picture he told me the story above. Interestingly the story that he was telling me was not the story that he was drawing in his picture. It was however the story that I was drawing in mine!

It was a really lovely experience, especially when suddenly he realised what I was doing. He abandoned his art work for a while and encouraged me with mine, becoming more precise with his descriptions and praising my drawing skills!

The story-telling now continued with his eyes glued on to my developing picture-board of what he was telling me. His eyes gleamed with delight as his witch in red clothes appeared beside the four-spotted ladybird, and the shield that was bright pink and luminous, was draped over the darker- than-night house.

The narrator took my picture of his story home with him but not before I had snapped a shot of it. It was lucky that I did. I have suspected for a while now that this little boy has a difficulty in some situations and with certain tones, in telling the difference between red and green.

Now as I look at my photos of our drawings I realise that something is amiss. The picture that I drew and the story he told do not match.

Green or red? That is the question

I had drawn my witch before he gave her the name the green-clothed witch but I had drawn my witch red! He coloured in his own witch green. Perhaps he was just getting stories and pictures muddled up but perhaps he was getting the colours mixed up again too.

At school, like in most schools these days, the blackboard is a green board and if the teacher uses a red chalk on it this child cannot read what she writes.When we play with red and green beanbags on a neutral background he confuses the colours; if we play with them on the blue mat he does not mix them up.

I think it is time to do a bit more finding out. I hope that thiswill reveal exactly where the problems with his vision lie

Professional falling

"A very professional faller" by Susie Mallett 2010

Last week I wrote an email to the classroom assistant to one of our "Petö" children. She had been unable to come for her weekly visit to our sessions because she had been spending her free hours learning how to use a special computer programme. It is one that we hope will offer assistance to the child in school, to communicate fast during lessons. It will only make communication faster if someone knows how to use it.

I sent the email so the communication continued between us and so that the school stayed up to date with the progress that we have observed in the child who she is with each day in school.

I had written that we have been practising taking three of four steps with no assistance many times in the session rather than trying to walk a longer distance.I suggested that they do this too in school by stepping between the desks or a couple of free steps to the car or to the blackboard.

I also mentioned that we have a wonderful new, blue mat and that this little girl loves to walk on it as it makes her feel so safe. She feels so safe that we have begun practising falling down, which has become quite a passion!

Today I received an answer to that email, here is a part of it:

Today F. was attempting once again to make a few steps alone. I said to her: "I am behind you, there to save you if you fall!" She answered: I can save myself! And after two or three steps she fell down " professionally". In that moment I immediately realised what you had been pratising!

How about that for a snippet of conductive upbringing! This is what our work is all about. We are reaching out to every corner of our children's worlds, using all the skills our children have everywhere, everyday.

What a joy to have such a wonderful team of colleagues, parents, brothers and sisters, people I meet daily, rarely or never, but communicate with over the airwaves. All linked together by the children who play an important part in all our lives.

When I asked the little girl about it all today she told me that she had coined the new conductive phrase: " professional falling", (professionell Hinfallen).

An Angel PS

Stroke group, auf Wiederseh’n!

It was the last day of our stroke group today. This means that we will not meet as a group again for quite a while. With Hong Kong coming up and the long winter with snow, ice and slippery roads before us our next block will take place in March.

Just when we were making lots of progress the course came abruptly, or so it seemed, to an end, but we are planning some in-between-things to get us through the winter with a few extra meetings.

Homework

As always on the last day we spent the time usually allocated to speech tasks, singing and picture- reading, discussing progress and homework.

When this was done and written out to take home, our clients made it clear that they had something else that they wanted to discuss. They wanted to tell Èvi, our new colleague, how happy they are to have her here.

Accepting change

Now that is quite a complement from a stroke group. A complement indeed from people who have been slowly learning over the years how to accept changes in their lives without becoming upset, worried, fearful and tense.

This small group have certainly got over this hurdle, that has been placed in all of their lives, with flying colours during this three-week course. It has noticeably made a difference having an extra conductor in the group and the clients have really appreciated this. Change has turned into something positive for them, no longer something to fear.

What has been lovely to observe is that they also realised from the beginning that they could help Évi too so she would quickly feel at home with us. They were so successful that Évi told us today that she was taken by surprise at how much she has enjoyed working with the groups of adults. This is something in which she has had very little experience until now.

The clients made her feel at home by practising to speak clearly or by speaking in English, but most of all they were all very kind to her.

Humour and laughter

The whole group seemed to get a new lease of life. It has been a pleasure to watch.

I not only saw that they have found some new reserves, in addition to that they have begun communicating with each other quite differently. The roles in the group have changed. The speakers have become the listeners and the listeners have begun to find their voices and speak out. We have had serious members of the group telling us humorous stories, the sense of humour being awoken again after years of being locked in. Knowing the subtle nuances of how to make something that is funny actually work and create laughter is not easy to recapture for these stroke clients. It is a thrill for us all when it works.

We have a group member who was for years on the outside of the group, always staying nearby, looking in but staying outside. He is now right in the middle. He now has become a central pivotal point! He has been the one helping Évi by explaining some difficult things to her in English. None of us knew that he could!

Caring for self and others

This young man of twenty-nine, whose life seemed to stop for him at the age of twenty when injuries received in a car accident resulted in hemiplegia, is now playing an important role in decision making. He is at the same time taking an interest in, and caring for, other group members. He offers to fetch older clients drinks, he helps me with the tasks of moving furniture and tidying up. He is much more concerned for his own well being too and is motivated to change some things in his life that up until now he has chosen to ignore.

For the past three weeks I have not heard from this young man, in answer to a question, his usual retort of “I don’t care, it is not important”. He responded positively with a voice of his own.

Èvi has a lot to answer for in all of this. A quiet presence, a smiling face, a help for me so the clients get more of my attention and a motivation for the clients to show her what they can do.

Èvi, one lady told us, does some things differently to how I do them. She explained to the group how this has been really good for her as she became more conscious of her limbs and body and how she moved and experienced touch.

Not alone anymore

It is two years since I last had a colleague who helped me with this group. Since then I have worked with between three and six clients alone. This has not been any easier for the clients than it has been for me, but we managed. We no longer have to “just manage” we can excel again.

Without a colleague to work with there has been no one with whom I could swap places with in the row of clients, so I could assist on one day this client and on the next day another. At that time the clients regularly felt a different touch and tried out different solutions with different conductors and we the conductors discovered new ways to help after watching our colleague at work. There has been no one to talk to the clients, to assist them in making coffee or tea, answer their questions or to search for information for them during the break while the furniture got moved around. I had to do the room change and talk at thee same time, when I should have been doing just the communicating.

We have all been missing this interaction, the change of roles and experiences. We have been missing the group work between conductor colleagues. I was so surprised and really pleased to discover today that it is not only me who noticed the change for the better with Évi amongst us, but my clients have noticed it too. Not only had they noticed it but one of them was also willing and able to express it.

Kicking off the discussion

The person to kick off the discussion today after the homework was settled was a lady who thirteen years ago could barely make herself understood with speech and at that time only three years after stroke she no longer had access to speech therapy. Today this lady was not only was able to express her joy that we have a new colleague, she could also explain why. She could express her emotions, she could explain to us how things had changed in her own perception of her body and she could talk about how it felt to have different people helping her. As if this list were not long enough she also motivated another quieter member of the group to speak out and give us his opinion, his thanks and praise!

I am so glad that Èvi joined us and so pleased that I had the confidence to let her have a go, to “just do it “ in the adults group. I had the confidence to let her have a go at leading the clients through small parts of the morning. Doing just enough on her own to get a feel of how it is and for the clients to get to hear her and communicate with her. I left her alone when they arrived so she could greet them and exchange news, I stayed beside her and kept the tempo in the standing programme or sometimes I took a step back to let the clients help and encourage when necessary, or to tell her the next thing that they wanted to do.

I am enjoying being in a teaching role again and having someone to learn from too.

Given a challenge and excelling

I knew from the beginning, deep in my soul that this adults block was going to be a great success. I knew too that the group is so confident when they are together, they know each other so well and enjoy being with each other so much that they would take on the challenge and excel.

What we experienced today was team work at its best. I am so looking forward to it continuing well into the future, not only for my own benefit but so I can see those important developments taking place in the clients lives that I have witnessed so many of today.

Thank you, Elliot

Connecting on the Net

Last week I was working on Skype with a client who asked me about where we could find contacts in the UK to help provide information about use of computers when you become disabled.

I have written on an earlier a posting that I have someone locally to help us with this but I know of no one in England.

I got on to the airwaves and, in no time at all, one of my emails came back with an answer.

Thanks to Elliot Clifton my client can begin researchng into what is available for her in the future. What a difficult thing that must be to do, so very brave and forward-looking.

Than you Elliot for this URL:

http://www.abilitynet.org.uk/

If any readers have further information to share on equipment available, or software, that makes computer use with a disability easier, please let me know.

Angels

András Petö and ladies

Petö Angels

I do not think I have ever mentioned "Petö Angels" on my blog before, except for those that were to do with András Petö himself. I have never written about them because I did not know about them.

That is not raltogether the truth, because my colleagues at the moment are all Petö Angels, and many have been in the past. But we are all getting old and the angels that I write about here are young!

My recent angels, the ones whom I have mentioned on my blog over the last two years, are young conductors, newly graduated conductors, most in their early twenties, all of whom I have worked with in different places or communicated with around the world. These angels have all been NICE Angels. They have been of many different nationalities and all have been brilliant.

Now I have met a young Petö Angel! She is Hungarian and she is brilliant too.

I have not only met a Petö Angel but, since she descended into our midst a few weeks ago, we have been working together every day.

I love it. I love not working alone. I love to learn from her, I love to be inspired by the amount of energy and ideas that she has, and I love to teach her and guide her. Most of all I love it that we are no longer isolated conductors working in groups but groups of conductors working with groups of clients.

Now we are four!

Three of us have been working here in Nürnberg for between twelve and seventeen years.

Between us we have more than forty-six years' experience working in Germany. Oue new colleague will hopefully stay for just as long!

The team consists of me, working here there and everywhere, my colleague in the integrated Kindergarten, plus another colleague who has been working here as long as me, who works with our babies and organises all sorts of interesting projects for us. And now there is our new angel, who has been here for three weeks, although it already feels like she has always been there at my side!

A team of old and new

The three of us oldies have been working alone a lot of the time. We get to work together now and then, but not enough. I always love it when I get the chance to work with my colleague from the Kindergarten in our three-week “Petö” blocks for the littlies, but it always ends to soon and we go back to working alone.

Now our conductor “group” is bound together by our new young colleague who this week has worked with all three of us in all our different groups. We are no longer isolated as conductors, we have a second member in each of our separate groups who links us all together as she moves between us.

She is going to become a Jack-of-all-trades and an expert in working with clients from two years to sixty-two years of age. She has experienced all of this already in her first few weeks. Yesterday she told me that she did not think that she was going to like working with adults, but she has loved it. And they loved her! The children love her too. They love all her new ideas, her new games and climbing adventures, and they love her big smile too!

On the way home last week I felt that I had been working as a pedagogue for the first time in ages. More precisely I realised that I had been a pedagogue all day. I had been teaching the children, the adults and the new angel all day.

Working side by side, two conductors can make tidying up and moving-furniture tasks disappear with a blink of an eye. When I work on my own those chores always take me away for too much of the time from the children and adults, and their activities and learning.

Understanding, with and without language

Yesterday, I enjoyed sitting down with my young colleague to discuss our work together. We talked about how we could best help each other. There is not much need for words, we understood each other from the first moment we met, we do not talk to each other very much while we work, we just do it and the children sense the ease with which we work together, and they just do it too. The adults, who are normally “Oh so critical” when someone new touches them or helps them in some other way to achieve their aims, are loving the extra attention that they are getting from us both.

Both children and adults have realised that, if my new colleague does not understand something in German, then I try to help her out in another language. If I can not manage it in Hungarian then I usually succeed with English. If not I use my hands and feet! I try my best, as I know the situation personally only too well, as I have twice been conducting in a language that I had yet to conquer.

The stroke group in particular has picked up on this and has started not only to speak much more clearly and precisely in German but also to speak English.

What more motivation can I ask for when I am doing the speech programme for the aphasia group, than to have our new colleague nearby!

From what I hear there are a lot of really good young Petö Angels going out to work in the conductive world. A new generation of conductors, perhaps to influence a new generation of conductive upbringing. Let us hope so.

I am feeling very privileged to have one of these young angels working beside me at the moment. I hope very much that the moment turns into a permanent situation!

Diagnosis

"What's on the horizon"by Susie Mallett 24th October 2010

I think I must be getting old!

No, that is not a diagnosis, just a feeling that I have had over the past few weeks when, on two or three days, although I was up early enough, I decided to leave my bike at home. The reason, I told myself, was that the weather looked a bit nippy, but it was really because the busy past few weeks have left my limbs feeling tired.

Anyway, it is nice sometimes to go on the tram and the bus and to walk across the fields. That’s how I got to see that gorgeous moon last week!

I have also had time some days to sit in the café by the duck pond for breakfast, because I arrived too early for work. It was there that I found time to read my English newspaper. There is always something that catches my eye after first reading all of my favourite feature, the Nature Watch. On this occasion,I remember, this was all about garden spiders, these are particularly splendid with their glistening webs at this time of the year.

After the nature there was the art

First I spotted Arcimboldo, with his amazing fruity faces on show in Washington, USA, and then I read about Kitagawa Utamaro and his lovely drawings of women to be seen at the Ikon Gallery in Birmingham, England. The Ikon was a favourite haunt of mine as a post-grad. art-student, and both Utamaro and Arcimboldo amongst my favourites. I wished that I could have been beamed up to take a look at them both.

Then there was ADHD and the roots of the matter

As it was, I had to go to work. I was just about to pack up and walk off to begin my stroke group when something about ADHD, attention-deficit hyperactivity disorder, caught my eye.

I have worked with a group with this disorder so I decided to spend a minute more to see what it said. You can read the full article from the Guardian at:

http://www.guardian.co.uk/commentisfree/2010/sep/30/attention-deficit-disorder-genetic-roots

In my Weekly Guardian was a shortened version, but basically telling us the same, that a Professor Thapur from Cardiff is claiming in the Lancet not that it can be proven, that one can say with confidence that the roots of this "disorder "are genetic.

I got the feeling that the author of the article, Johnjoe McFadden is telling ua with his intitial statement, just as Cordelia Fine did a few weeks ago, to be aware of Blobology:

http://www.susie-mallett.org/2010/10/blobology.html

Mcfaddon wrote:

“ADHD's roots are complex

To claim attention-deficit hyperactivity disorder is genetic is to dangerously simplify the nature of the condition.”

I am not sure what difference it makes knowing more about the roots of the matter when dealing with the clients and their symptoms, but it got me wondering about diagnosis and what difference it makes to clients, parents and carers, and professionals dealing with the clients, whether a diagnosis has been made or not.

Do other conductors discuss this with their clients?

I do, quite a lot, with adult clients and with the parents of children.

Is a having a diagnosis always good?

I am not sure what I think about having a “diagnosis”. Sometimes good sometimes bad: for some people good and for others bad.

I let a diagnosis influence my practise as little as possible, apart from, of course, in relationship to the health and safety of the client.

I have been in many situations when colleagues and other professionals have been very influenced by the diagnosis, especially when this is autistic or ADHD, and have let it affect their behaviour towards the client immensely.

Often the diagnosis “autistic" is taken as a label for certain behaviours eo which some professionals then say "No, this is not our in our field of practice", refusing to have such clients in their groups or individual sessions.

As a conductor, art therapist and pedagogue, I work out a programme for my clients independently of the diagnosis, but dependent on their needs at the time. I have worked with ADHD groups and with autistic clients. Yes, they do have a diagnosis but this is not what I am looking at, I am looking at what are the needs and wishes of my clients, and what I can offer them.

Back to the importance of a diagnosis

I am hoping that I will get some people writing in with comments about their own experiences on this subject. Although it is a something that I have talked to my clients about a great deal I am sure there is a lot more to say on the matter, especially by clients, the adults and the children, and the parents and the carers themselves.

Many adults with multiple sclerosis, adults with Parkinson’s disease and also adults who have suffered a stroke, tell me that on the day that they are given a diagnosis, when they are told what is wrong, why their bodies are not behaving in the way they are used to, one of the first feelings that they have is of relief: relief of knowing that they are not imagining it all and that there is a name to the problems that they have.

This relief is tsoon replaced by all the fears and worries about the future. Most of the people I speak to say that, despite the fact that after being diagnosed they can read up on all the possibilities of what is to come in their futures, some of which can cause depression and angst, they still believe that it is better to be in the know.

Psychologically it is really important for them to have this knowledge, they can prepare for he future, discuss plans with family members, and of course in some cases it is very important so that medicine can be prescribed to ease and even slow the progress of the symptoms.

The clients often say that, when they know what is wrong, when this thing that has been happening to them has a name, then feel that they can do something for themselves. The feel in control again. They say they can begin a search for ways to ease their symptoms, they can begin to organise a way of life that suits them. Some of them discover at this stage, and some much later, a conductive group and lifestyle.

They then describe the time when symptoms are there but they do not know why, as a time when their lives are “put on hold”, while they trail from one doctor to the next having tests and awaiting results.

There are practical things to consider too

When someone is constantly away from work with symptoms that remain undiagnosed this can cause great tension in the workplace. With a diagnosis, steps can be taken to work reduced hours, even to take early retirement or sick leave. The illness fits into a compartment that can be dealt with by the health insurance companies and the employers.

When I started to write this I purposely included stroke in the list of adults waiting for a diagnosis. You may say that a stroke happens, the diagnosis is immediate. Yes, it usually is but that does not mean that the client gets to hear about the diagnosis immediately. I have heard many a sad story about stroke victims who have not known for weeks what has happened to them. They have not understood, because of various problems in communicating, what has happened to turn their world up-side-down.

One of my clients told me that, when she was well enough to sit in a wheel chair and be pushed to a different part of the hospital for treatment, she was given her papers to hold on her lap. It was while waiting to get into the lift that she read that her diagnosis was a stroke.

She could not speak, so she could not ask. No one had thought to sit beside her and explain to her what had happened and what would happen in the future, and try to answer any unspoken questions. She could read and she could understand all that was said to her, but for many months she could not utter a word that was understandable to anyone but herself. This client spent many days without a diagnosis in a state of fear and bewilderment. She is sure that, had she known, it would have had a very positive effect on the quality of her immediate recovery.

Parents of children

Parents also tell us that at the moment the diagnosis was given to them they felt a sense of relief .

Often they say how important it is to have a name for an illness or a disease or condition because, although they know something is not right in the world of their child, often the professionals do not believe them.

A diagnosis gives these parents their right to be right.

I have also heard it said that, once parents of childten with cerebral palsy receive a diagnosis from a doctor, and they go on to ask what the next step forward is, then all too often they come up against a brick wall. Often there is a lack of ready advice, a lack of knowledge maybe, and the parents are all too often left on their own. Sometimes they have an offer of physiotherapy, sometimes they are left alone with nothing but the World Wide Web to surf for information.

They must decide alone and choose like any other parent what they want for their child. But they are not like any other parent, as they have a child with a diagnosis. This means their child has "special needs" and does not, according to the social services and educational systems, fit into the system that other children, those with no diagnosis fit into. The choice that other families have is closed to them.

So in the case of parents of disaled children, yes they also welcome the diagnosis that they receive for their child but they would also welcome some stepping stones and guidelines showing them where they could move on to after the diagnosis has been given. The majority of parents that we meet in conductive environments are the parents who were dissatisfied with early help. That is what set them off on a search for something that they felt was more appropriate for bringing up of their children. I do not really have a true cross section of parents to ask, as we do not see the ones who are happy with the provision that they have been given.

As Andrew Sutton wrote onn his blog last week, some parents say that, when a child with a motor disorder is born, there is a removal of hope, and often it is replaced by despair. Some hope may return when the family receives a name for the child's condition or illness. With a diagnosis they think that they have made a step on a new road, not to recovery but to finding a means to live life with their child. Soon, some parents say, that small amount of hope is snatched away, soon after it has returned, when they discover that provision for their child is inadequate or beyond them because of prohibitive costs. Hope can reappear once more when the family discovers conductive upbringing.

Having a diagnosis can also be prohibitive when it comes to schooling. Often the people dishing out school places do not look further than the words on a paper. A child with cerebral palsy, ADHD or autism, or any other debilitating condition, may miss out on an appropriate schooling because of one mark made on a piece of paper. And then the fight begins.

Comments please

These are just a few of the thoughts sparked off while reading the newspaper one chilly, autumn morning. I would really welcome some comments on this one, from clients conductors providers of services, anyone who has something to say about this.

Notes

Susie Mallett on Conductor-Blobology -

http://www.susie-mallett.org/2010/10/blobology.html

The Guardian, ADHD's roots are complex –

http://www.guardian.co.uk/commentisfree/2010/sep/30/attention-deficit-disorder-genetic-roots

Johnjoe McFadden -

A science author and professor of molecular genetics at the University of Surrey

Cordelia Fine -

http://www.cordeliafine.com/

Andrew Sutton - HOPE http://www.conductive-world.info/2010/10/hope.html

Conductor of the airwaves

"A smiley pumpkin" by Susie Mallett October 2010

Or are they microwaves or some other kind of waves?

It is not really that important what kind of waves they are, what is important is that it works.

I have just been conducting via Skype and I really quite enjoy it.

I have had this option available to me for just about two years now and I have the feeling now that it is actually beginning to do the job that I imagined it would do.

I had always hoped that I would be able to be of help to people who know about conductive upbringing but are only able to attend sessions irregularly, in blocks or maybe only once a year at a summer camp. All of this may be several hundreds of miles away from home and therefore with little or no possibility of follow-up work.

I wanted to bridge this gap, to help families learn how to continue to live conductively between their visits to camps.

I have been in contact with several families whose children have been attending camps and we have spent some time asking and answering questions over Skype. As most of these families are in America and Canada it has very difficult to coordinate “meetings” at times when the children are not eithe at school or not in bed. It worked out sometimes at the weekends, between sports events and family outings. It has not been so successful as to make it a regular weekly or monthly session.

Now I have such a client in Europe, which makes the timing an awful lot easier. Apart from the ease of timing I really do feel like we are beginning to get a communication going that is working really well.

My client has a special notebook for writing questions that arise during the fourteen days between our “meetings”. We go through tism one question at a time, I show a few movements that may help, I describe why I think the physiotherapist has suggested certain movement in their sessions together, and expand on these when possible. I give tips for times of the day or certain activities in which movements can be incorporated to improve posture and loosen up joints. I search for info in the Internet and send the URLs immediately, or later if I need more time to find out what we need. We arrange to communicate via email if something crops up between Skype sessions.

Questions

My client always has a list of questions ready, many of them are of the sort that arise from being isolated with a newly diagnosed illness. They are questions that I can answer because of my experience, or I know where I can get an answer from. They are the sort of questions that get discussed in my conductive groups.

There are so many questions that can cause a client quite a lot of worry, but when answered the client is often immediately at ease. It is because of the need for such discussion that I offer a three- hour programme in my groups where there is time allocated for a round-table discussion on whatever the theme of the day is. This week we covered learning to cook and mobility scooters, last week it was the best type of walking sticks to use and accessible holidays in the hills of Bavaria.

Having a debilitating disease is bad enough without the worry of having unanswered questions. Without a group to attend near to home when discussion is an important part of the session, then Skype is the next best thing.

And one from me

I have one unanswered question at the moment too. Perhaps there is someone out there who can help to answer it. It is something that I have found an answer to this week for two clients here in Germany, but now I need an answer for a client in England.

I am looking for an individual or a company who supplies computers and computer accessories to people with disabilities. I am looking for the person who knows about speech -activated computers, and breath-activated computers, and about using the blink of an eye or a nod of the head to write a letter. All these devices and more I tried out with my client in the Computer Museum in Paderborn in the summer, and I now wish to have information about them for my clients to use at home.

I have a contact in Germany now I need one in the UK. Any information will be very gratefully received.

Big Brother

I had a lovely experience in the last few minutes at work yesterday. Actually, as always, I had many lovely experiences all day long but one sticks in my mind as it was the last thing that happened and rather special. It reminded me of my sister's twins communicating at play before they could really speak. I always watched them; I was entralled by such things long before I was a conductor.

Little Princess did not want to go home

She had missed a lot of her time for doing exciting things yesterday, as she had an appointment with our shoe-man who plastered her legs up to her knees and gave her some catalogues to choose some tattoos from, to make the new plastic splints pretty. With this all done, plus a new seat fixed on to her rolator, for perching on when in need of a rest or a chat with a friend, she got on with her "work".

She still had painting and making autumn deco on her agenda. There was lots to do.

It was going-home time when she asked if she could stay longer to finish off!

I have never had that happen before. This littlie goes home alone so all that was needed was a quiuck phone call to stop Mum worrying where she was.

She was just about finished ten minutes later when Big Brother arrived at the window. They started communicating with each other through the glass, understanding perfectly what the other wanted to say, although not a sound could be heard.

Littlie had been what we call "Mund faul", mouth-lazy. It had been one of those days when she had found it just too much like hard work to speak. We all get days like this and for this little athetoid girl it is very understandable that sometimes she does does not have the energy any more, especially if she is not understood first time and has to repeat the whole sentence again. On such days she uses a nod of the head and a blink of an eye with those who she knows will get the message this way.

It is never like this with Big Brother!

When Littlie was in the Kindergarten she could not speak very much but Big Brother always understood each sound that she made and this is how it still is today. There are more sounds and lots of words and really long sentences coming out of Littlie's mouth these days but even so, watching these siblings communicating with each other is still very special.

When the crafty work was over and Littlie was all dressed up ready to go, goodbyes said and out of the door, I watched them meet up outside, through the closed window.

Getting home was slow going. First there was the hockey to play; brother had a hockey stick and a tennis ball, and inline-skates on his feet. Then there was the chatting. Littlie stopped walking each time it was her turn to speak, it is easier for her this way.

I could see the movements throughout her whole body as she tried her hardest to get the words out. She was squealing with delight at whatever her brother told her when he responded immediately to her words. And so continued their slow journey home.

When talking and listening are a two-way process

There was no "Pardon", "Please say it again", "Sorry I did not understand" to interupt this conversation. The whole thing flowed like the game of hockey that they were playing, the banter going back and forth with the same rhythm as the ball.

It was a delight to see that there are times for Littlie when speaking is communicating and not just a frustrating time trying to tell someone what she needs.

A lovely end to a lovely day, except of course there was still the experience of the lovely moon and sunset to come! (See the previous posting.)

Smiling at the moon

"The man in the moon is singing"

21 October, 2010, 18.00 MET

"Then the bus arrived"

Walking home after a nice day at work

Sometimes it is good to be too tired to cycle, especially when my camera is in my pocket and my notebook is close at hand. Below is what I wrote while standing in the middle of a field, and above you can see what was in the camera.

As the pictures show it has suddenly got very cold, snow has been forecast, in fact on higher ground the first sprinkling of white dust can be seen.

From my notebook

"Twilight is lovely, an amazing violet sky. To the east a full moon is rising fast in a perfected graded pastel sky and behind me to the west a red ball of sun is fading in a sky criss-crossed with vapour trails. Very cold."

From home

An hour after I had written my notes about the dusky sky, I received a message from home, England, that told me:

“Sky is a wash of pale orange and duck-egg green. Very nippy.

PS

The reason that I put up so many pictures of the huge, rising moon is because I was so surprised at the speed at which it was moving as I stood waiting for the bus. I had never realised before that the moon comes up so quickly. It was appearing just as quickly in front of me as the sun was disappearing behind me. I was really glad that I had left the bike at home.

Who are the congresses for?

"Tiger" by Susie Mallett, 2010

Who are congresses for?

This is something I have been thinking about and discussing with several people recently, including with one of my MS clients this morning when he mentioned a recent event held by the German MS Society here in Nürnberg.

With the two conductive congresses on the horizon, in Würzburg and in Hong Kong, many of us have been talking about who the organisers wish to attend. I have already mentioned on my blog that it will be difficult for conductors to attend the whole of the Würzburg Congress, as it starts on Friday morning when many of us will be working. Conductors are not on the published list of people expected to attend either, which presumably tells us a great deal about that side of the story!

On the other hand the World Congress's organisers certainly are expecting to have disabled users of our services in the audience, and prospective users too, as there are are people with disability making presentations. I have every confidence that there will be a barrier-free environment for them, just as there was at the Nürnberg Congress in 2009 and Munich in 2008. I do not think that peple should even consider that they might need to ask about this, unless they have extra medical needs

Knowing in advance

On the Hong Kong social-networking site there was a message from Elliot Clifton. His questions there got me on my high-horse last weekend. They, and my high-horse, have occupied my thoughts quite a lot since.

Elliot was asking about accessibility for wheelchair users in the hotel and congress centre in Hong Kong. I was rather shocked that he had even to think about something like this, let alone spend time asking questions. Attending such a conference, he should be able to set off from home taking for granted that within the congress environment he will be in a barrier-free environment.

If Elliot and others cannot confidently assume that a World Congress on Conductive Education will get this right, with no questions asked, how can we expect the rest of the world to be accessible to wheelchair-users.

Elliot and others should be able to make this journey knowing from the start that they will be able to get around with no problems in the venue and the hotel, and between them. and to and from the airport. Once Elliot knows this then he can begin enjoying the Vorfreude (the joy of anticipation) that the rest of us are experiencing. If he does not know it, then the next few weeks will be full of worries instead of the joys that such a trip should bring him.

If wheelchair-users know that the everyday living is going to be easy for them, then they can look on the rest of the trip as an adventure, and can set out to conquer the rest of Hong Kong as tourists as well as they can.

As it has turned out, the information is now being given and I think that Elliot will have been put at his ease.

My high horse was due to Elliot having to ask at all.

Who does the IPA provide World Congresses for?

The International Petö Association could so easily have made sure that everyone feels welcome, going out of its way to make a happy time for wheelchair-users. I have had the impression that there has not been an equal hand held out to disabled people and their carers, never mind a special one.

It is not that provision has not been made in Hong Kong, but that this was not made clear early enough. Much of the enjoyment in preparing to be there may have gone for Elliot because of having to be concerned about things that should have been made clear earlier.

I used to be a carer myself. I know from hand personal experience the number of advance phone calls, letters and extra visits that it took to make sure that we could holiday and not have obstacles in our way all the time. Someone in Hong Kong I am sure will have been doing the same caboodle, maybe even someone in a wheelchair has been testing out the venue etc., just like they did here in Nürnberg last year, but this has not been communicated, giving cause for Elliot’s worries and, one hears, at least one person to cancel altogether.

In a strange way I am embarrassed that anyone needs to ask at all. We, the able-bodied congress-goers do not have extra worries and it is just not OK that disabled people should, not at a congress that is all about disability and the upbringing and lifestyle of disabled people.

I have been incredibly impressed with the efficiency of all those I have had contact with in Hong Kong during my own preparations for this trip. Everyone has been so kind and helpful, and amazingly fast at solving all sorts of problems. Perhaps I am particularly prompted to mention access because of my own personal experiences in the past while travelling with a wheelchair-user, and knowing how a hiccup in organisation can ruin a wonderful holiday.

Early congress communications made no mention of disabled people and provision for their special needs. Disabled people could be forgiven for thinking that the IPA does not really want them there. It should have taken so very little for those who have been working in disability all their lives to give a little thought and care to the matter.

It has been nice to see that over the last week there has been more information going up on the Congress website that begins to answer Elliot’s questions and hopefully put him and other wheelchair-users, and people with special needs, at their ease. Hopefully, they can begin to enjoy the excitement and the Vorfreude that accompany the planning of such a wonderful adventure.

I can come down of my high horse now, and wish Elliot and co. a smooth journey.

Apple crumble and the supermarket dash

Off to the oven with the crumble

Snip snip

Sometimes I hardly believe what a wonderful team we have developing in the lives of our little ones who attend mainstream school. Every single person involved in their lives is determined to succeed.

Last week one of the school assistants asked whether, on the day that she visits "Petö" to pick up tips and ask questions, she might do some cooking with the children. Not only that, she offered to take the children shopping for the ingredients on the way over to us from school.

Shopping

The school assistant later showed me the photos and the videos of the children that she had taken in the supermarket. I could hardly believe my eyes. It was hard to believe that she had had the chance to take photos, but the two children are really independent.

There were pictures of Little Princess, who nly three months ago started to walk home alone, and her mate the Jolly Prof., who had learnt to walk independently two years ago, whizzing around like mad things with their own hand-made shopping lists made in the group last Friday, each with a little shopping trolley. There was a video of Little Princess hanging on to her trolley and chasing Jolly Prof. with his, both of them shrieking with joy! I do hope that the other customers enjoyed the sight as much as I did on film.

In Germany we have child-sized trolleys in many supermarketsIt was these that the two children had been using today.

They did not seem to mind that they were eating their lunch at three in the afternoon, or that the apple crumble that they cooked was not out of the oven ready to take home for tea. They had had a whale of a time and had no idea that they were "at Petö" for the afternoon!

Including

When I was at the Petö Institute we had lots of wonderful role-play mornings and afternoons, enacting real life in the group rooms. I am so happy that with this wonderful team we are able to do more than role play. We do the real-life action, and even get it down on film!

I do not have the photographs of the dash around the supermarket yet, but I do have some of the cooking action.

A big thank you to the classroom asssitant who set off this spontaneous spot of action!