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Monday 18 February 2013

A wonky world

Pinning the tail on a donkey!

“Oh, how I would like to know how you see the world!”

This is what I said to Jolly Professor recently as he threw one plastic ring after the other on to a thirty-centimetre-high stick that stood about two metres away from him. He was standing, balancing well, and while throwing he was supinating his arm and flicking his wrist so that the ring flew like a spinning disc through the air to land exactly where he was aiming for.

He knew immediately what I meant and retorted–

“So would I”

I knew what he meant too.

Sorting it

Jolly Professor has problems with his eyes. Well whether he actually has problems with his actual eyes I am not so sure but somewhere along the road to understanding what he is looking and then deciding how to deal with it something goes a bit wonky, at sometimes more wonky than at others. The degree of wonkiness depends on too many factors to list here, and anyway I have no way of telling what many of these factors are.

It has taken us a long time to sort out what we can do to help Jolly Prof., especially at school. 

During his years in conductive groups and Kindergarten we have worked on improving his eye movements and his head and neck movements, his balance, turning and skills while walking through obstacle courses have all improved too over the years. At his school we meet the teacher and receive the advice of a specialist for the visually impaired who has lots of equipment that we can try out.

Jolly Prof. has found the best place to sit in the classroom and the best position for his lamp. We have contacted experts in technology, so soon he will have a camera and a computer that will bring the words from the blackboard to the screen on his desk so that he will not lose his place so often by having to look up and down, and here and there.

We have worked for many years together learning how to concentrate while looking and coordinate what he sees with his actions. This has been a great success, so much so that he plays football in a club rides a bike alone to school and is off to grammar school, gymnasium, in September.

He was really confused when everyone started giving him machinery that made texts bigger, patches to cover one eye, glasses that appeared not to alter things. Slowly but surely he is getting it all sorted. With all the people around to help him his actions and vision are merging into a controllable whole, but he and I still do not really understand what he sees, how he sees and why he has still has such difficulties.

Why, we ask ourselves, does he need work-sheets enlarged when he can see to sew and paint in fine detail, screw in tiny screws on IKEA furniture and make fine chocolates?

Assembling a car for his best friend

Why is it that he can throw one ring after the other on to a small stick two metres away and get it spot on, but then trips over everything that comes into his path as he walks across the room?

Yes, we know that it is to do with coordinating what he sees with his movement but that still does not mean we know what he sees.

Getting it together

What is most important to know is that we understand each other and we strive to make the best of what he sees in his world. We know that with the appropriate help school days in grammar school will still be fun, hard work but great fun.

Most conductors will know how it is with some of the children and adults with motor disorders. We observe in all activities that they just do not see like most of us do. 

Off  with list and trolley to buy SCHAMPYONKS for pizza

Keep on learning

Perhaps, like me, you suffer from visual problems; have bifocals and prisms or very strong lens, so perhaps like me you too can come close to guessing what it is like for someone like Jolly Prof. Perhaps you too have a client like Jolly Prof. who likes to explain things in detail so, you too can learn, as I do, a lot more that helps us on our way towards understanding.

Sometimes I worry about taking all these observations to the grave. I have a mine of information in my head that cannot be learnt from books, things that cannot be discovered in a short research project. I have many stories to tell and experiences to share.

I am always eager to learn more and do so by reading, observing, asking and listening. I learn more through my work and through my contact with clients, carers, parents and partners. I learn more when I write my stories and start learning some more when I read what others write down.

Recently I followed a link from a blog that I have mentioned here before –

This link took me to the stories of another blogging-mum, another story teller –   

There I read what a mum had written about her experiences with her child with cerebral palsy when she was given a camera.

Like me that mum is also interested in learning what those children who see the world a little wonky experience.

By looking at her daughter’s pictures this mum was helped towards a better understanding of what it is like to experience life from a different point of view, when the world is crooked, upside down or just seen from an unusual angle.

Through a camera we can only see what happens when a child cannot balance properly or has problems with fine motor movement so it is hard to grasp the camera. We cannot see from a camera shot what is actually going on in someone’s eyes and how images are coordinated with movement and understanding of the world. But even seeing wonky pictures is an eye-opener and reminds me of something I once wrote about showing a child with a motor disorder the full moon.

We really do not know what the child sees

Are there two moons, a pink moon, a clear moon or a fuzzy moon? Is there a face on the moon? Is it a 3D moon? Are there craters or does it look like a flat disc floating in the sky?

Do we have to hold the child’s head in the middle? Do we have to point the child’s finger to the sky to follow it in the direction of the moon? Do we have to use lots of words to describe what is out there, or do we need to be silent?

Mostly we do not know, but we can do our best to make the experiences of looking as exciting as possible and in the mean time keep on learning how to balance, how to control a head and trunk, coordinate sight and movement and even learn how to manipulate a camera and keep it steady, in order to build up a less wonky image of the world.


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