Daily, weekly and annual routines

Winter at Boxdorf village pond

It is nice to be reminded just how important our daily, weekly, and even annual routines are. 

An early morning cup of tea on the balcony, a weekly visit to a friend, or the seasonal routines of blowing eggs for Easter, making cards for Christmas meeting for an autumn family walk, all remind us that our world is turning nicely.

At my work the children often remind me how much they depend on their own routines' staying constant when they arrive at the group and ask- ‘Where is Évi?’ or ‘Where is Susie?’ when one of us is ill or working elsewhere.

They always notice when another piece of our new kitchen is installed, and have a hundred questions to ask and need to look through the new cupboards and drawers to make sure that all the old things that they are used to are still there.

When a school assistant is ill, or a new replacement begins, it is the first story we hear before coats are removed.

If Mum or Dad is away at work, if a favourite teacher has left the school, or a sibling has gone off on a skiing trip, these changes are also reported. These changes are often the reasons for differences in children’s moods and the children know, without really knowing, why it is important to report these changes in routine to us and to their friends – we discuss them over lunch, their friends ask questions and we all learn from the situation. We learn how to adapt and learn new ways of coping with what comes along in our paths through life.

Spring at Boxdorf village pond

As conductors we must remember that we also have clients who cannot rush in the room and ask where someone is, tell us that brother is away all week and that he is sorely missed, tell us that Dad has had to fly off on a business trip, or that Grandma is poorly and now in hospital. Many of our children cannot report these routine-changing events to us so we must remember that when a child is sad, does not want to eat, seems restless, unmotivated, agitated or unhappy that perhaps their routine has also changed and perhaps we should ask about it in order to indicate in some way that we understand.

This of course happens positively too. Positive changes in routines also have to be discussed and changes in behaviour noted and often praised.

I am the first person to initially react negatively to change. I have improved as I get older but still my initial reaction to a change in my routine is fear, worry, it can even be panic. This may only last for the few seconds that it takes for me to tell myself everything is fine in its new way, or it can last for days and weeks depending on the degree of change.

I think it is one of the reasons that being a conductor suits me, because although my work is so varied and colourful there is always that underlying routine in it that we need to develop for the clients and it does me good too.

I have work in a new city, a new family, a new group of adults, new colleagues, but when the work starts I have to build into it a routine and this is very calming and reassuring and spreads its influences out onto my personal life.

Summer at Boxdorf village pond

What made me start thinking about routines today?

It was when I sat down to read the newspaper with my early morning cup of tea, the one that always tastes best, and I realised how much I had missed this routine and thought perhaps that this was why I never seemed to get going on Saturdays recently.

At last … my Guardian Weekly had arrived and just in time for Saturday morning breakfast as it always used to.

I cancel it when I go away and it usually starts appearing again the week after I return home.

But after my Christmas and New Year break it did not appear in my letter box – week after week.

At first I did not realise why, I thought I must have told them the wrong start-date, but eventually I wrote an email and was told that they had forgotten to restart delivery. My routine had been disturbed and oh how I had missed it.

Each morning as I got ready for work I took Chekhov or one of my other Christmas books with me, all quite heavy tomes, instead of compactly folding the Weekly into my pocket.

Rotating routines

My new routine starts again on Monday, the one that I have to prepare for with lots of sleep in the preceding weeks because it exhausts me.

For three weeks I have been working with the stroke group in the mornings but next Monday I begin three weeks with the Kindergarten children. This work starts an hour earlier but my day still stretches on well into the evenings as always. I find this work tiring but I have developed this as part of my routine so that despite always catching a cold from the always runny noses, I love it.

The dependable routine of nature always accompanies everything we do and makes its own changes along the way. I am happy to see that when I get up a earlier next week I will now be able to enjoy some daylight before I start work and perhaps in the evenings too, on my way home, if I am lucky to get away on time!

Autumn at Boxdorf village pond

My old much-loved, and much-needed, routine

The snow has almost melted and the days might warm up soon if it does not snow again, then I can begin the other routine that I love so much – cycling to work. 

Despite the massive amount of road-works on my route for the extended tramway I am determined to ride my way into the routine of summer, with nature gazing, picking four-leaved clovers and photographing the sunset all to look forward to!

I am glad that nature with its seasons ring the changes but still keeps to its daily routine.

PS

I chose the photographs published here to illustrate my early morning routine of observing the seasonal changes at our local village pond,  not to illustrate the changing rhythms of nature that also affect our lives, that is something else to be dealt with another time.

Out and about in Munich in a wheelchair

School children and adults fighting their way through Munich by wheelchair

http://www.bild.de/regional/muenchen/barrierefreiheit/muenchen-nicht-rollstuhl-gerecht-29580910.bild.html

In this article school children and adults complain about what they have to fight against to travel around in Munich. They explain how broken or foul-smelling lifts and with transport staff and members of the public complaining about delays due to wheelchair users, hinder their progress several times each week.

One of the school children suggested that everyone should spend one day out and about in a wheelchair. Then they would know what there is to fight against.

One of my stroke clients expressed a similar sentiment this week when he described when he was in court defending himself in a case to receive a care allowance. It was suggested that it was not necessary as in a few months he would be as right as rain again! 

My client did not go as far as to suggest that the speaker of these words should suffer a stroke, but that he should spend a year in a wheelchair with the problems that the stroke had given my client. Whether this had an influence on the outcome we cannot know but the result was in favour of my client.

My partner was a wheelchair-user, I used to sit in his wheelchair around the house but I never did go out in it. I was too worried about getting stuck like we so often did when I was out with my partner and then having to get up and push it home, thus giving a false impression. But the mother of one of my clients did ride several electric wheelchairs the 10 kilometres to town and back. She also used them on the underground in test runs during the months while they were deciding which one was the best for their daughter’s needs. 

So yes, despite many improvements during the past twenty years, there still is a lot to be done so that wheelchair users and other people with disability can take an active part in everyday life without extra barriers put in their paths and without hurdles to overcome.

Oh, dear! or not Oh, dear! That is the question

"An early morning walk, in blue snow under blue skies"
30th December 2010

"Little Caleb making great strides as he battles with cerebral palsy", reports Portadown Today. "Conductive education focuses on re-tracking the messages to the brain to help him sit up and use his arms and legs. He has a poor sense of balance and his ..."

When I first looked at this, asit landed in my in-tray yesterday, my initial reaction was “Oh, dear, not again”. I am sure I have no need to explain which piece of the short Google alert alerted the Oh dear! reaction. Now that Andrew Sutton tells us that he has retired from G. alerts I also wondered what I should do with this. Should I add it to my personal "Oh Dear!" list for later use or have a look?

I decided to have a look at:

http://www.portadowntimes.co.uk/news/Little-Caleb-making-great-strides.6675427.jp

I was pleased to read up-to-date news from Buddy Bear, in Dungannon, still struggling to raise funds but still there providing a service. Some of my colleagues in Budapest were spending their summers in Northern Ireland working with Buddy Bear in the very early 1990s.

As I began to read through the article I decided before I got far to copy it and add my remarks as I read. Despite its being a positive report there were several “Oh dear” moments to add to the initial one that I had when I read about the brain messages. but there were also a couple of better moments as I read, even a smile or two.

My comments

As is often the case with conductive services this family had the luck to come across Buddy Bear and conduction, but it was only by chance. What can we do to remedy this? It happens like this all over the world.

Cerebral palsy is referred to as belonging to the child: “his CP”. I compared this to what it would sound like if I decided that I would own “my migraine”.

Very late diagnosis of quadriplegia, at over one year of age, and a prognosis of never being able to walk, proved wrong at 17 months when, after discovering CE, this child began walking with a frame!

A familiar story?

Actually it sounds like the family made the initial diagnosis themselves. How can this still be going on? Why do doctors not tell the parents earlier? This still dumbfounds me.

"We met someone who said they thought it looked like cerebral palsy and when Caleb’s mother typed it into the internet all the symptoms we had seen in Caleb came up."

There were a few more sentences that if a conductor had been asked to check the news report first, would, I hope, never have been published: “...the one-to-one, specialist therapy” and “regular daily exercise for his muscles” are two more of them.

I went on to read with dismay something about which I recently wrote on my blog:

“...closed for Christmas but will open in the New Year”.

Is there never anyone manning the phones, or available on the Internet to answer questions from these shocked potential clients who might have read this newspaper report?

This summer, when a client of mine found herself newly diagnosed with Parkinson’s disease and unable to contact conductive centres in the UK to gather much needed information, a friend suggested she contacted me, many miles away, kin another country. What a disgrace that this has to happen.

A smiley moment

A particular smile happened when I was amused to read that the PAI is still being referred to as the “world-famous Peto Institute”.

As trainee-conductors in Budapest we always called it "The World Famous. “Just going to the World Famous?" This was the usual question asked if we met any of our colleagues in Moszkva Tér, not far from the Institute. Many of the British students found themselves called upon to give interviews for local British newspapers as they prepared for their first trip to the PAI. The headlines were usually something like “Angels of Mercy to study at the world-famous Petö Institute”, 2British trainees off to the world-famous centre in Budapest” etc. etc.

I wish that I remembered them exactly, but there were enough of such headlines for the name to stick and for us all to use the term in our everyday speech for the next twenty-odd years!

Another nice moment

It seems that this particular school is specialising in early intervention. I have not come across this in many other places and it is good to see. I have mentioned before on this blog that as a trainee at the World Famous I accompanied a conductor on visits to the premature baby unit in one of Budapests hospitals. It is an experience that I have never forgotten and one that I would love to experience in my own practice.

"There are thousands of children with cerebral palsy, many of whom could be helped by early intervention. It could make the difference between children being able to walk or spending their lives in a wheelchair”

Finishing on this note

This posting turned out not to be so much of an "Oh dear" Google alert as I intially thought that it would be.

http://www.buddybeartrust.com/websitepublisher/what-is-conductive-education.html

A sniff of communication

By Susie Mallett, July 2010

At the end of each week my Guardian Weekly newspaper and Time Magazine arrive, one on Thursday and the other on Friday. They last me all week. I take them with me on the occasional tram journey, read them over breakfast or with an afternoon cup of tea. They are a real treat.

I was on the balcony just now in the last few rays of evening sunshine with a cuppa enjoying the connection through my newspaper with England and the English language. I was thinking about how important this communication is for me.

There was a lovely Nature Report by Paul Evans, always one of my favourite pieces in the whole paper, especially when he writes from Norfolk. In the most recent article from Wenlock Edge his words reflect my own observations from my bike this week. “Something has changed”. It is not quite autumn but the greens are no longer those of high summer, the flowers are no longer fresh and bright and the early morning air has a chill again. I live far enough north in Europe for the flowers and birds and changes in the landscape to be similar to those at home. I can often relate what I experience here to his vivid descriptions of England.

I always read my Guardian Weekly from the middle outwards. I like to read the nature report and the book reviews first before I work forwards or backwards. I read Learning English and do all the lessons as if I were a student! I enjoy it when I get to the page with small articles in a column down the side in the Science section. Here I often find very interesting snippets, just as I did today. It was all about communication and also about disability:

“A fifty-one-year-old woman who was left paralysed and unable to communicate following a massive stroke has written for the first time in seven years, scientists say. The Israeli patient, who was diagnosed with “locked-in-syndrome”, typed an emotional email to her six children using a revolutionary device that is controlled by sniffing.

The technology, developed by scientists at the Weizmann Institute in Rehovot, Israel, is now being used by other severely disabled people to surf the internet and even control a wheelchair. One, a sixty-three-year-old quadriplegic woman who can barely speak, wrote her first letter in ten years with the device and has started using it to send emails.”

How wonderful that these two people, and hopefully many more, have rediscovered the joys of communication through technology.

I am forever thankful that since I have lived in Germany I have been able to communicate with the wide world via the Internet. The developments that have taken place in this field of technology since 1993, when we purchased our first computer, are colossal.

But despite the internet, emails and surfing it is the end of the week post that I enjoy more than anything, news from around the world that I can take outside with my cup of tea and read slowly.

I have been reading the Guardian since I was eighteen and the Guardian Weekly since 1989. I have been reading Time Magazine just as long. They are the very last things that I would economize on. I love this means of communication that lands in my letter box from the outside world. I have no television and no radio but I love reading newspapers!

To be able to read or be read to is one thing but to be able to respond is just as important. I also use technology and my blog to communicate.

Now these wonderful developments in technology have made a two way communication possible for the people mentioned in the Guardian Weekly article using the new “Sniff technology”.

It would be lovely if just a little more time and money could be spent on developing technology for the purpose of communication for disabled people. With access to such equipment many people would have their worlds unlocked and they could become more active members of society.

Notes

Guardian Weekly 06.08.2010, Science, Sniff of communication – http://www.guardianweekly.co.uk/