"Under a big umbrella" by Susie Mallett 2010
Many strings in the orchestra…
…and many of the bows are playing together at last
With forty-two visits behind me, forty of them for conductive work, one to attend a grandma’s funeral and the other to go to a Tina Turner concert together, I have spent, all together, a total of over two years of days and nights helping this wonderful family to live conductively. We are now realizing that all that hard work has actually resulted in an amazing life-style for a severely disabled young man.
It has not only been with the family that I have been learning over the past fourteen years. The circle is very wide in this household, widening more and more as my client gets older, his experiences get richer and he reaches out into the world outside the home.
A system of educating and learning has developed with friends and relatives, villagers, conductors, school teachers, occupational and physiotherapists, riding instructors, swimming teachers, and many others over the years joining in the development of my young client‘s conductive lifestyle.
Over the past six months this long journey of hard work seems to be drawing together so that everyone’s paths have come closer together, converging sometimes showing us that many long term aims have been reached. New wishes and ambitions like snorkeling in Egypt, going on holiday in Australia with his sister, meeting a nice girlfriend, and going on dates in the nearby town are all now the very realistic goals. Just thinking about past achievements and the newly opened up horizon brings a tear to my eye. But still there are everyday hurdles to overcome before this developing independent life is an orthofunctional life where constant practice and reminders become just small nudges in the right direction.
Are you proud that I now work in the afternoons as hard as I do in the mornings?
This is what I was asked today after a visit to my client’s workplace.
As strict as always I said: “I am very proud that you travel to work alone on public transport, something that you have worked so hard to achieve over the past few years, but that you do your work both mornings and afternoon is what I expect from you, it is what you get paid to do.”
There was a look of shock on his face. I do not think he was really expecting a yes from me because he knows me as well as I know him, but he did not expect quite what I said although he said in the end that he agreed.
Of course we all have praised his change in attitude and his ability to transform himself and adjust his behaviour so he can fit in well with his colleagues at work, but that he works all afternoon, as I told him, is what I, his group leader and his parents all expect from him.
I sometimes wish that the expectations that my parents had for me were as high as this young man’s family have for him. As his group leader said this afternoon for someone with his diagnosis, athetoid cerebral palsy, he exceeds many expectations already.
Later, when we were alone, I said to my client that he does not really exceed all expectations as we believe that he still has lots to learn and we are all here to help him, for example, to do all the things that the freedom of travelling by public transport alone now allows him access to.
I spoke to the group leader at work of our hopes that one day all new experiences that come his way will become part of daily life and our client will just take them in his stride without too much guidance from the team around him.
The man about town
Today we were in the town taking the usual route back from work, changing buses in the market square. We had decided to have lunch in town but first of all to get a few jobs done that my client’s mother usually does for him. I a leisurely ten minutes window shopping while my client walked down the cobbled street to the opticians to get his crooked glasses fixed. Something that needs doing quite often and will now be accomplished without his Mum’s help after visiting the fitness studio, before jumping on the next bus, on a Monday evening.
Please note that this was a wet and slippery cobbled street and that just a few years ago this young man could not walk once around the back garden unaided.
After getting the glasses fixed we went to the bank to use the money-machine.
A couple of years ago, when my client was at college, he did a project about the difficulties that need to be overcome when “banking with a disability”. He told me at the time about all the disadvantages that a group of wheelchair users and he, a walker with fine motor difficulties, had discovered when trying their hardest to get at their Euros. There were a lot of hurdles to be crossed. This group of teenagers wrote a report about it and sent it to the local bank and the city council offices.
The screen was hard to read from the angle that it is viewed from at wheelchair level and sometimes it was hard to see the numbers on the pad or to reach them when sitting. At some banks there was too little space in which to manoeuvre an electric wheelchair in order to get at the right angle to be able to use the machine, and often for my client with his wobbly fingers the time the machine allowed for transactions before spitting out the card was much too short. Sometimes the whole procedure must be repeated several times before reaching the required speed.
This is just what happened today. As my client did not need 50, 100 or 200 Euros but 120, he had to type in the amount himself and press several buttons to pass on to the next stage, he was a few seconds too slow and eventually he looked around for my help. We used the situation as yet another step in conductive learning as I pointed out that really he should not ask someone waiting in the queue behind him for help, we may run off with his card or his money, or indeed with both.
So taking the matter into his own hands he looked around for help in the bank eventually announcing to the girl at the counter that he had a physical disability and that he sometimes needs help with the machine to get at his money. He also has a problem with his speech, but this young lady was brilliant and immediately understood the gist if not every word and kindly offered him any help that he needed.
I really did feel proud of him at that moment as I watched him playing the man-about-town and completing all his jobs. He went on to choose the café for our lunch where I treated him to mug of hot chocolate and hot cherries, ice cream and cream all piled up on a homemade a waffle, that he proceeded to eat alone with not a drop on him or on the table. That is quite a feat I can tell you, especially with the ice cream melting at top speed despite the autumn weather.
Plans over lunch
Over lunch my client and I had a wonderful conversation. We discussed our visit to his work place and made plans to improve on the successes already achieved. The waitress was impressed by my client’s efforts to be understood and a man in the corner having his lunch alone did not take his eyes of us. I wondered what he was thinking. I hope that he was as impressed as I am by the young man whose company I was in.
We had a pretty good start to our working week together and we are looking forward to finding out what we will discover next on our conductive journey together, a journey that we hope will last for at least another fourteen years. We already have plans for a three week “wellness break” together in 2013 and I think I know of just the conductor who could provide such a thing for us. So if you are reading this lets get the thinking caps on and start planning!
What a real pleasure it is to watch this life transforming before our eyes. It is lovely to experience this expansion of contacts in my client’s world and to be able to work with more and more of them conductively.
Orchestrating this transformation together
There are two very important new elements at the moment. These are the monthly day-trips that my client makes alone on the bus to work with my conductor friend and the fact that for first time in his life my client has people helping him all day long at his place of work. These are people who as well as teaching him how to do specific a work, they also aim to develop his independence. They teach him how to deal with all that life throws at him as an adult, just like the rest of his contacts, therapists, friends and family do. They teach him how to react to disputes between workers, arguments between friends and just last month the group leader escorted my client every afternoon for ten days to the bus stop until he was convinced that he could get home on his own.
It is not surprising that in most conversations that we have these days this man gets a mention. His belief in my client and his ability to adapt and change and develop new skills is helping so much to bring about huge transformations that make such a difference to this young man’s quality of life and to the whole family.
I am really looking forward to the next fourteen years, observing the expanding world and being part of helping it all to become conductive!