Monday, 2 June 2014

Conductive living spirals on, this time on four wheels



Going home alone, 2014

Another milestone in the life of our Little Princess

I think I will still be calling her our Little Princess when she is in her twenties!

I have known her since she was a tiny two-year old and now she is a small eleven-year-old. She has athetoid cerebral palsy and is the sunshine of many people’s lives

Now she is an eleven-year-old grammar-school girl and getting along in life very well.

She amazes us all with what she achieves and it is extra special to see how she uses today’s technology to organise her life, her social appointments, conductive appointments, photographs etc. It is all done on net-book, computer or smart phone, with that all important swipe of a finger that we must remember to teach in our task series! Little Princess uses mostly her little finger for this so remember to practise it with each finger in turn so our clients can pick the one that suits them best.

I have been a bit distracted from what I wanted to write about but all of this is part of what makes Little Princess’s life a success. She wants to take part in everything she finds interesting, she wants to try everything alone and nine times out of ten she finds a method to use so she can do it herself. Most important is that if she does not find a way or knows a way but needs help to achieve it, she asks – and she asks and asks until she gets the help she needs. Her enthusiasm, motivation and charisma, and her will to learn all mean that she rarely needs to ask anyone more than once.

I was talking to someone on Saturday who also knows our Little Princess very well and I mentioned how confident she is and how much self esteem she has, things that are very important to her as she approaches new situations. My friend said ‘You have taught her this’ – meaning that conductive upbringing has taught her this and for a huge part of her life that conductive upbringing had a lot to do with me – however, there have, been several other conductors involved over the last 9 years.

Technology

The first time that I communicated with Little Princess by text messaging was such a joy for me. It was our first ever flowing conversation without my once having to ask her to repeat something that I had not understood. It must give her such a sense of well being to be able to communicate quickly in this way. People can get to know her in a different way. She can be funny, serious, clever or witty without losing the drift of a conversation, without the joke being too long-winded, without giving up before the punch line, because she can type and spell and read on her net-book or mobile phone.

She still manages to communicate very well with her own voice, with her eyes and with a nod of the head in the right direction – with those who know her well, and with others too who take the time to watch and listen. Jolly Professor, who finds it very difficult to look most other people in the eye when he speaks, does not take his eyes off Little Princess when they have a chat or make arrangements to meet at school at break time to swap World Cup Football cards.

It is a pleasure to watch these old friends enjoy each other in much the same way as my sister’s twins did before they could speak properly.

It is lovely to watch them huddled in a quiet corner, a little bit away from the other children, communicating as they have done for most of their lives. They met nine years ago when they were two and three-years-old. For the first four years they met daily at Kindergarten, they then went to different junior schools but spent three afternoons each week in a conductive group, and now they meet each day at school and an afternoon each week in the conductive group.

They communicate without technology but often with or about technology as this is their world, the world of most eleven-year-olds.

Moving on

With the milestones involving new technology that she has reached over the past few years Little Princess is now ready to widen her physical world and not just communicate with it electronically.

We have waited and waited for this point when she wants to go off and do something on her own or with her friends.


Independence and fun on three wheels 2013
For several years now Little Princess has been getting around on her three-wheeler walking bike. It has been with her at junior school and she and Jolly Prof. both use one at grammar school.

Jolly Prof. can walk long distances alone but cannot carry his school bag so he has his three-wheeler bike that gives him more independence. Little Princess cannot walk without help so we have always know that she will need a different method to get around when she wants to go off to town with her friends or go to the disco.

Over the past few years Little Princess, her parents and her conductors have discussed the next milestone regularly. We have sought the expert advice of Ariel the man who helps us with most of our needs as far as sticks, splints, wedge cushions, shoes, bikes, rolators and wheelchairs are concerned.

Little Princess has spent the last few months negotiating with Ariel until they eventually decided on the wheelchair that she should try out. It is a compact wheelchair with two sets of wheels, one for manual use and one set for use with the motor. The motor is fixed under the seat and there is a tiny joy stick.

An example of this type of chair was brought to the group for a test drive and Little Princess had not been in it two seconds before she turned the speed up to its highest. We had to take her outside so that she did not damage our furniture or us!

She was off. Accompanied by Ariel she went home, collected her Mum and showed off her new-found freedom.

It only took a couple of weeks before Little Princess’s own chair arrived for a test run. Adjustments, choice of fabric and wheel covers also had to be made. A plain dark cloth was chosen, with artistic advice from me and fashion advice from Mum – we both wanted her gorgeous clothes to have no competition from the background that she sits in. Discs with leaping dolphins were chosen for the wheel covers.

Setting the wheel in action
 The Wedge with a Hole

Fixing the Wedge with a Hole
We went outside for a trial-run, as it was far too slow for her indoors! We went to the Kindergarten so that they too could share in the next step in Little Princess’s life. It was warm so we sat together and had a drink, but Little Princess needed help as she had no place for her drink. So in a spontaneous instant, as it often is with conductors, we invented The Little Princess Wedge with a Hole

Testing, testing
My colleagues and I had already decided that a wedge between the knees was one of the extras that we wanted for the wheelchair so we bodged together our ideas with material available and showed it to Ariel. Low and behold, a week later when the finished wheelchair was delivered, there it was – the Little Princess Wedge complete with the hole, the drink holder. The technician who made it was delighted with the idea will do the same for other children now. Little Princess asked whether the idea should be patented!

So the finished wheelchair was at last there with all its adjustments and additions in place. Little Princess had been a bit tired after school; she had no homework but had been listless and had not really wanted to join in much with our activities. She woke up, however, when Ariel walked in the door with two wheels in his hand, guessing that the rest was to follow. By the time I had helped to unload the chair from the van she had her shoes on and was ready to jump in it. Off she went, again with her friend Ariel chatting beside her, home to collect her Dad this time. He had to sign the papers, learn how to change the wheels and remove the motor, and he also had to take Little Princess’s walking-bike home with him for she intended to drive home in her new wheelchair. We made a deal for this first time, a helmet on her head and me filming her till she crossed the road, with a quick phone call to Dad that she was on her way.

2nd new bike 2011



Football with rolator 2011

Walking home in winter 2010

Jolly Prof. building Little Princess a Diddy-Car
Little Princess was so confident. I have seen this phenomenon before when our children can use electrically powered chairs amazingly well but that is usually after a fair bit of practice. Little Princess has been racing around on a bobby-car, on a Diddy-Car, on a bicycle or on her walking-bike since she was two-years-old, but has never driven an electrically powered wheelchair before. She is a natural when it comes to driving something, especially as fast as possible and through narrow spots.

What next?

I told her that I look forward to the next step when she is 18 and rides a quad-bike or a car. I can actually see her riding one of those VW Beetle trike conversions, or a Harley Davidson with a side car!

So with motivation, enthusiasm, a passion for technology, a will to be independent and an air of normality about it off went Little Princess in her newest vehicle.

Another set of photographs for the archives and for Mum and Dad and the rest of the family, who were not there to see it.

'Do not touch that switch'. Raring to go!
There were lots of smiles again that day and after as we witnessed Little Princess set off to explore another piece of her expanding world. This wheelchair arrived just in time for the Whitsun and summer holidays when the sky will be her limits. I think this development will be especially important for her brother who in the future will have his adventurous sister right beside him.

Bye! 

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