Paths to lives

Jolly Professor with one of his own inventions

Some short stories of some people and their shared paths to lives

Networking

While I was putting the finishing touches to the book that got sent to the printers last week, I was working with Laddo in his home.

At round about the same time I started to write an article about my work with Little Princess and Jolly Professor, and their friends in our after-school group.

To add to all of that I have been carrying around a newspaper article in my notebook from 2 December 2011 issue of the Weekly Guardian, about a man who suffered a stroke. I had been planning one day to write about it here.

Getting round to it

I was curled up on the sofa on this snowy Sunday afternoon with a cuppa and a book when I suddenly realized what it is that all these success stories have in common and why I have been collecting certain snippets from them in my thoughts and notebooks for so long.

All these people live in the centre of their own network, a network so well coordinated that lives that were threatened to become dysfunctional by injury, illness or disabilities caused by birth, are able to develop into fulfilling lifestyles.

The expanding worlds of adults 

Post-stroke

Waltraud’s wonderful story about surviving a stroke is told in her book, the one that will be published and on sale from 24 February 2012. Over the years, here on my blog, I have regularly published snippets of her story, told through my own eyes. Her small but fast-growing network began with her husband, her father and her mother, but it soon spread to include her brothers and sisters too. Later on the network widened to include different therapists and neighbours. More recently it has included choir members, book designers and many more as Waltraud’s lifestyle has opened up. I have been lucky to have been part of her network for most of the years that this progression to a functional lifestyle has taken place, sometimes helping to coordinate parts of it, at others just giving a little bit of moral support.

Through childhood to adult life

I have been around for fourteen of the twenty-one years of Laddo’s life, and I have not only witnessed his development but have also been instrumental in expanding the network around him. I have been actively assisting with its coordination. Often I have introduced ideas such as attending the local water-aerobics class that his families have helped to implement, at others I have been practically involved, for example when learning to ride the buses. I am always looking out for new openings for him and people who may be interested in helping, joining the local network to encourage future developments.

Laddo now has the swimming instructor in the village as part of his weekly programme, the horse-riding instructor too. But they are more than just a part of his weekly life, they provide huge milestones for him. He is going snorkelling in Egypt this year with the swimmers and he plays the role of Saint Martin every 11 November on the horse that he rides regularly. Further afield, in a local town, he meets my conductor-colleague, with whom he practises his bus-riding and his social skills. At the same time he learns to keep appointments and to organise trips to museums, swimming baths and other excursions with her.

Children from Kindergarten to school, already enjoying their paths to life

The children who left our integrated Kindergarten to attend mainstream school still join us in the conductive group in the afternoon. They already have a huge network, each one ever-expanding and encouraging these children to progress along their paths in life.

Many of the links in their networks are coordinated by the conductors. The conductive centre is the constant link in their lives and in many cases the conductors are the people who know well all the other links in the network.

This week I have been overjoyed to discover just how well the school-teacher, school-assistant, child and conductor network is succeeding.

Two school assistants spontaneously arrived at the group this week to tell us how well everything is working out and I received a wonderful thank you letter from a mother who just wanted to tell me how well her son’s life is progressing at the moment, not only at school but also that he is ice-skating and learning how to stand up from the ice.

1, 2, 3, 4 and 5

To top it all, each day during the week a different child arrived with a story of the first top marks received in a test. 

1, 2, 3, 4, 5, are not only numbers associated with a conductive programme, they are the scores that are given to German school-children, from a very early age, for their work, with a One being the best.

All of our children wish to attain a One so much. They know that they are capable but there have always been so many problems that have prevented it. Some of the children were occasionally at or near the top of the class in their early schooling, in German or in Maths, but that was before the stricter marking system comes into use as they get older and does not carry with it the same feeling of success.

Some children are slow at writing, others have problems with their eyesight that make it difficult to copy words and sums from the blackboard, some have problems with speech and there are difficulties for them in conveying what they think the correct answer to be.

When all the children came in this week exclaiming about their successes in German Dictation, Religious Education, English and Maths, it was an indication to me that this part of all their networks was working well. Each member of the group had achieved top marks in at least one subject.

It was time to celebrate, but we would need to invite all the networking group to the party. Every link plays an important role in the creation of the happy souls that achieve such success and if we cannot leave just one of them out, for the party or at the moment in the lives.

The time will come when some of the people in the network blend into the background to make way for new links in a wider world.

“Team ties transcend injury”

Now I come to the newspaper article

The words in the title above sound very much like a title that could be given to all the stories mentioned here. It is in fact the title of a sports feature by a Guardian newspaper journalist, Louise Taylor.

She writes about a football scout and former Middlesbrough player, Gary Parkinson, who suffered a severe stroke in the autumn of 2010. At forty-three years of age he was left with what the article describes as “locked-in syndrome”. The article goes on to tell us that he is almost completely paralysed, while his mind remains alive and active. His only means of communicating, just like for many others with the same condition, is by blinking. He began to develop this method with his family. Then his network of people who work together on the development of his fulfilling lifestyle expanded to include his colleagues from work and he communicates with them in the same way. The managers, coaches and others who work for the football club travel almost two-hundred kilometers to meet their colleague and collect the assessments on the players who Gary Parkinson, the scout, thinks the management should, or should not, follow.

Gary Parkinson compiles his reports working with members of his family then meets with his colleagues to pass them on.

This man communicates by blinking and by using this method he is able to work. Through the good coordination of his own network he is also in his own way taking steps along his path to a fulfilling lifestyle.

Notes

Gary Parkinson -

http://www.guardian.co.uk/football/2011/nov/24/middlesbrough-gary-parkinson-locked-in-syndrome

http://www.bbc.co.uk/sport/0/football/15835359

Weddings

My festive gingerbread biscuit

I have not yet been asked for advice about organising a wedding where there would be disabled guests or when the bride or groom are themselves disabled, but as my young clients get older, several of them very near to completing their university education, I am sure that the time is not far off.

I have just discovered an article in the Guardian that deals with just this subject:

http://www.guardian.co.uk/lifeandstyle/2012/feb/17/disabled-weddings-plan-accessible-day

Reference

http://www.mdctrailblazers.org/news/961

Village lifestyle equals conductive lifestyle…

Norfolk's winter colours by Susie Mallett, 2011

...well, it does in the case of Laddo!

I was relaxing at home, under the Christmas tree with a book, with some sewing and a cup of tea. After weeks of not having the time or the energy for more than just work and the occasional bit-in-between-for-conductors, I had at last tidied up and had sat down to do something just for me, when the phone rang.

In Germany it was the Zweite Weihnachtstag, the second Christmas Day, what we in England call Boxing Day in England, and I was enjoying a rare treat these days, a day at home.

I knew immediately who it would be on the phone as there was, as always in his case, a pause, a deep intake of breath and a great effort made to speak loud and clear.

It was Laddo

Laddo phones often. He leaves messages on the answer phone, all evening sometimes, knowing that I will call him back. I always do call back because I know that he usually wishes to discuss something very important. He rarely calls for chit-chat. He likes to discuss with me any problems that have cropped up at work, he tells me when he is sad about something or he describes new exciting milestones in his life.

Dial-a-conductor!

I still visit twenty-one-year-old Laddo two or three times a year, but since he has achieved greater independence and is out there in the big wide world he seeks my advice more and more often on the phone. I am always so happy when he does this, as it is a great pleasure for me to know that he feels that I am there to talk him through the next steps forwards in his conductive life at all times and not just when I am with him in person.

Often all that Laddo needs is reassurance that he is doing everything as he should be, or he needs lots of praise heaped on him for some successful, new adventure that he just knows will please me, like travelling on his own to work and back.

Actively living in the techno-age

I could almost hear the relief in Laddo’s voice when he heard me say Hello. That relief came at the point when he realised that I was at home and that there would be no need for an answer-phone message or a redial. He uses both a mobile phone and the land-line phone, just like any other young person does. With his clumsy, athetoid fingers and hands, however, I know that he gets impatient when he gets an answer-phone service, even though it only means pressing Redial half-an-hour later. That is if no one else has used the phone in the meantime.

Joy at Christmas

Laddo began the recent conversation with a very jolly:

“Merry Christmas! How did you celebrate?”

I love the fact that he phones me quite independently from the rest of his family, and I am sure that they have no idea that we speak so often. He enjoys having someone who is his, who he can turn to in moments of celebration, the St Martin’s Day festival for example, at times of joy and also of disappointment, when worry or mourning.

Laddo as St. Martin:

http://www.susie-mallett.com/2010/11/st-martin-on-horse.html

I try to return calls that I miss as soon as I can and I spend time asking Laddo to repeat until I understand him, so that I can offer advice, congratulations, or console or share sorrows and joys. Not once in all the years that I have known him has he ever said that it does not matter, he has never refused to repeat until I catch on!

Laddo considers our chats very private and has often very quickly ended the call when a family-member enters his room.

This Christmas call was jolly, a merry Christmas call

I could hear immediately from the tone of Laddo’s voice that he was happy and relaxed. He was on holiday from work so had no worries to tell me about from that part of his life. His Granddad is recovering well from a serious illness so no sadness there at the moment either. I thanked him for my present and the card that he had created for me with paint and a typed seasonal message before we got on to discussing his busy life and I marvelled at the clarity of his speech.

Pressing news?

Although I like to think that Laddo had just phoned me to wish me Happy Christmas, I could not help but wonder whether he had some pressing news to impart.

Perhaps he had met my bestest friend and colleague on one of his weekend conductive-living trips and had news for me from her.

I am so happy that my NICE conductor-friend in northern Germany agreed to do the bits-in-between-for-Laddo that became so very necessary as his independence increased. I saw a need several years ago for more conductive input in Laddo’s life than I could give at my routine stays at his family home. It came about when he was at the brink of independence and at the same time his siblings were all off doing their own thing and spending less and less time at home with him. Laddo spent a lot of time alone in his late teenage years and was getting quite miserable about it. With just his music and films to entertain him he had too much time to think and not enough to do to keep him busy and developing.

Time to find some new interests and activities

One of the new activities that we planned was the once-a-month-on-a-Saturday outing, travelling alone on public transport, to a pre-prepared conductive-meeting with my bestest friend. My conductor-friend emails Laddo a choice of four or five activities and Laddo decides before he sets off whether they will visit a museum, go swimming, shop for new clothes or do some carpentry.

This arrangement proved to be a turning point in Laddo’s development and, together with a few more activities in his near but ever widening world, Laddo now believes that the sky has no limits!

“It takes a village to raise a child”

One of the other activities that we chose for Laddo was water-aerobics at his local village pool. Yes, this village of less than one-thousand inhabitants really does have a swimming pool and a large one at that. Laddo has attended this water-aerobics course for several years now with his mother, auntie and a dozen other villagers.

The swimming-instructor is the father of Laddo’s riding-instructor, who, with her riding school and stables five-hundred metres along the road from Laddo’s home, also owns the horse that Laddo rides for the St. Martin’s festival.

It was another step in the right direction for Laddo when his riding lessons moved from a village ten miles away to his doorstep meaning he walks there once or twice a week on his own.

Not only does he walk to the riding lessons alone he also has to organise himself before hand on his own so he gets there punctually.

Mum or Dad, brother or sister do not remind Laddo, they do nolonger have to think about Laddo’s appointments because they do not have to drive him any more. These are his hobbies and now that he gets himself there under his own steam he also has to remember to go. This need for planning is something quite new in the life of this physically disabled young person who, after years of hard work, finds himself at the age of twenty-one independent enough to go places alone. We practise it together and it has been known for Mum actually to let him forget and miss an appointment so that he learns how to deal this the consequences of doing so.

Learning to snorkel in the sink

Some readers may remember that I wrote about the fun Laddo and I had together while developing the breathing technique needed for snorkelling. We did this walking around in the house with the snorkels on and by submersing our faces in the bathroom sink.

We took on this task because the water-aerobics and swimming-instructor had thought up something more interesting for Laddo to do at the end of the water-aerobics class. During the time when the middle-aged, mostly female fellow-swimmers swim a few lengths of the pool to finish of the evening, Laddo dons the snorkels and flippers and learns to snorkel. I have watched the teacher when involved in teaching this difficult task and I admired his patience and determination as much as I do Laddo’s. Next time I visit I will, having been asked to do so by the teacher, get into the pool and join in.

The cherry on the cake

Just as I guessed there was a cherry on the cake to my jolly Merry Christmas call.

It was almost as a by-the-way that right at the end of our conversation, that included work, home, family, music, television (a new one for Christmas with a difficult-to-master remote control), that Laddo eventually came to the point! And a very important point it was too.

“I am going to Egypt.”

I knew immediately that praise was due. That Laddo had at last mastered the art of snorkelling!

One of the snippets of conversation that I had picked up from the side of the pool on my last learning-to-snorkel visit was the swimming-instructor’s telling Laddo that, if he mastered the art of the snorkel and the flippers, he would take him to Egypt on his next diving holiday.

It seems like yet another milestone reached

I also remember Laddo’s mum asking whether the teacher was planning on taking Laddo to Egypt on his own. To our pleasure and amazement the answer was Yes. Mum was not to be left out, however, and she and Laddo’s big sister, plus a couple of other villagers, will all be joining the snorkelling party on a trip to Egypt in the spring.

I think that Laddo’s Mum, who has been going along to water-aerobics for just as long as Laddo to assist him with the undressing and dressing and prevent falls on the slippery tiles, is thrilled that she can go on a holiday with her son as an equal. There will be enough willing pairs of hands to make her help almost redundant for much of the time. Mum’s and Laddo’s hard work is paying off. As the conductive lifestyle spreads its wings ¬- beyond the boundaries of the home, the village, the work place and visits to my bestest friend, to sporting holidays abroad - more people are involved in Laddo’s life and know how to help make life interesting and as independent and fulfilling for him as possible.

This will be a holiday of a lifetime for this family and their friends. A holiday where Mum’s presence, and that of his sister are welcome, but not absolutely necessary.

Well done Laddo!

I look forward very much to joining in with some of the final snorkel-practise sessions in the pool on my next visit, and to joining in too with the pre-holiday excitement.

Laddo’s perseverance through the ups and downs of teenage life is certainly paying off and I think he will be the first time to tell me this next time that we meet. He often tells me how pleased he is that his Dad and I did not let him give up when all he wanted to do was turn his back on all the hard work.

All I can say is how pleased I am too. I just love being involved in the life of this young man, his family and his ever-increasing village of friends.

Notes

It takes a village to raise a child:

Book by Hilary Rodham Clinton

African proverb, attributed to African proverbs, could be Nigerian Igbo people whose name for children is child of the community”

http://en.m.wikipedia.org/wiki//It_Takes_a_Village_

Previous postings on this subject:

http://www.susie-mallett.com/2011/08/conductive-living-thats-way-to-do-it.html

http://www.susie-mallett.com/2011/07/transitions-in-family.html

http://www.susie-mallett.com/2010/12/tough-living-and-tough-loving.html










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?