Jenda – PATH for Young Man in Czech Republic

Written by his Mum.

Derek Wilson and Colin Newton as part of their training in the Czech Republic modelled a PATH live around Jenda and his family. This is what his mum wrote about the experience and what followed!

I’ve been a Transition Program consultant only for a while. Rather than my working experience with person- centred planning, I’d like to share my experience as a parent. I learnt about person-centred planning on training courses led by foreign instructors that I started to frequent as a parent of a disabled child. Later on, the seminar organisers asked me if we, or rather my son, would like to participate in a seminar as a “living, breathing exam- ple”. We accepted their request. I knew the course organisers and was confident that we would not be exposed to uncomfortable situations, despite the fact that the planning would take place among lots of strangers. The purpose of the meeting was to introduce the Path planning tool to the participants.

Jenda invited a number of people to the meeting. He invited me, his three siblings, a neighbour and her children and a family friend and her son. I invited the social worker who had worked with Jenda.

Jenda arrived at the meeting with his assistant. The lecturers welcomed him and introduced themselves. Jenda’s guests sat in the front rows. Other participants sat behind them. There was a large sheet of packing paper pinned on the wall with Jenda’s Path written in colour and a sketch of a journey on it. In the right upper corner the heading Dreams indicated a section with no boundaries dedicated to dreams. Next to that section, almost in the middle, a circle called Goals, possible, positive captured one’s attention. The path to those goals, with a description of each step, went from the left to the right.

And the planning started within a few moments. First we – everyone at the seminar – had to put aside eve- rything standing in the way of good planning. So, first of all, we took off our judges’ wigs. Some people took off real wigs, other people removed imaginary wigs. In reality we tried to put aside judgemental thinking, rigid statements and judgements such as: that won’t work, he won’t learn how to do that, that’s ridiculous, he’ll never be able to do it… Then we threw away imaginary chains and fetters and the burden of our negative experiences, fears and prejudices that tie down our minds, among other things. There’s only a squeaky rubber hen left among us, so that anyone can squeeze it as if to say: I don’t understand what you’re saying, This is too complex. You are using words that I do not understand.

And so we relaxed and began. Jenda was continuously at the centre of attention. He invited people to come up to him at the front to help him, first to express his dreams. During the discussion one section of the pack- ing paper was filled up. “I want to drive a tractor, go to the seaside, and play in a band.” After Jenda ran out of his own ideas, other people helped out. “What kind of dream do you see for Jenda?” “I can see him with his girlfriend driving a red convertible.” “Is that so? Is that your dream, Jenda?” And a red convertible it is – right there on the paper. And also a guard dog and super duper communication technology and also a big heart on the house where he lives with his girlfriend, and little figures – friends that he would like to be surrounded with.

That completed the first part of Jenda’s journey. According to lecturers it is the most difficult and important part. Everything that follows should be directed towards fulfilling those dreams.

And then we turned to the next steps. First, back to reality. Is there anything on Jenda’s journey to his dreams that can be fulfilled within a year? We formulated the first goals: play guitar in Vaclav’s band at Dad’s birthday party, live on my own in an apartment in our house, go out for coffee with my girlfriend… Having made a list of goals, we took another small step forward. First of all – what’s the situation now? We described Jenda’s current situation, his current position. Then Jenda took a marker and made the first note in the column “Who we will need”. He made a list of people who offered their assistance, as well as those who are absent, but whose assist- ance would be required. I could see we would have to contact them. We also needed to know what would make us stronger. As we got closer to the goal, the recording paper became filled with writing. Before we reached the goal we wanted to know what would be done by whom and by what deadline: by the end of November Jenda and his brothers will have cleared out the rooms where Jenda plans to live. Every Friday, Jane, a volunteer, will have met Jenda at half past four. By the end of October Aunt Anna will have driven Jends to a farm… and the last empty column was thus filled in. The plan was done. It was large, colourful, and cheerful. It made such an impression on Jenda that several months later he put it on the wall of his flat. How did Jenda feel after two hours of ques- tioning and answering, listening to interpretation from English, continuous attention and being surrounded by lots of people speaking to him, directly and indirectly? Colin, the facilitator, turned to him and asked him in adorable Czech with a thumbs-up: “Jenda, is everything OK?” With a half thumbs-up: “Half OK, half not OK?” And with a thumbs-down: “Not OK?” And Jenda’s thumb said: “I’m OK”.

It’s been more than a year and a half since Jenda’s planning process. Not all the goals have been fulfilled. But I still consider Jenda’s planning process to be highly beneficial not only for Jenda, but also for the rest of us. I can assess only from a distance what Jenda got out of the planning process. Jenda has got his own flat in our family’s house and he is gradually becoming more and more independent. It is becoming more obvious where our assistance is needed and what he can manage on his own. He’s been meeting with the volunteer to talk over the whole year and using a computer for communication, which he otherwise does not want to use. He has been out for coffee with the volunteer several times and occasionally plays in the band. He has neither managed to play in the band on a regular basis nor has he been to a party for single people. Neither has he been helping as a volunteer with lawn mowing in our community. Instead he goes to the care facility twice a week and takes care of the garden.

Some things have gone well, and others haven’t. Some things have been postponed, while others are still pending. I have to admit that my plans work in the same way. And what has the planning process given me? And why is it worth writing about its impacts and benefits? The planning session was amazing in and of itself. We had a great time, lots of fun and laughs; we shared it with our children and friends. It did not drain my energy – which happens to me at most of the “parent meetings”. Clearly, Jenda was taken as a person who has some skills, who wants and needs something – just as the rest of us do. It was built around Jenda’s strengths, hobbies, and dreams. I did not have to defend Jenda or stand up for him; I could simply enjoy the fact that I have an adult son who is capable of doing lots of things, who has his own dreams and many people around who are willing to support him in his life. I realised that the people in our lives do have the potential to assist Jenda and the entire family – something that is highly appreciated and needed for Jenda to live his life. That the burden on family caregivers can be distributed in a natural way among a greater number of people who will do what they are ca- pable of doing without feeling strained. I felt they did not perceive the tasks they assumed as a burden. I realised what I personally need on the long path to Jenda’s goals, such as breaking them down into small and simple steps that are manageable for me, that I must enjoy my successes, not rush and delegate responsibility to others.

Not only did Jenda’s journey start a process of specific changes in his life, it also revealed sources of support and ways of using them. Regardless of the fact that we did not fulfil all the goals, I rest assured that Jenda, as he goes on his way through life, can set other, new goals, that he can choose different ways to reach the goals he has not yet attained and that he will not be alone.

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