Adventures in Zagreb

In Zagreb with self advocate Beth Richards to talk at the fourth annual Mental Health and Autism conference organised by a small group of reluctant activists/autistic mothers.

We ate štrukli, wandered around the Festival of Lights before the conference was opened by Zagreb mayor, Tomislav Tomašević.

The day was intense. I talked about social murder, flourishing lives and the Laughing Boy production. Beth offered insights into her involvement in various projects. The Lost in the System panel, including Kristina Karlović, Jelena Čupković-Premuš, Ljilja Ivanković, Marko Buljevac and Raphael Bene, talked sense while listening to lengthy impassioned/desperate contributions from parent attendees. Niamh Mellerick offered an unusually plotted request for recognition that well meaning actions in childhood can have long term impacts for autistic children. Matea Begić Alić finished up, talking about her research into autistic people’s lives and support.

Today Beth and I ran a coproduction course at the University of Zagreb for a team of researchers pioneering different ways of doing research in Croatia. A lively and engaging conversation with the sweetest cabbage for lunch.

Contrasts, similarities and moments. Shared atrocity stories, sadness, disbelief and anger spilled into the conference and course. There’s a long way to go to change practices in Croatia though in many ways we’re not much better in the UK. Eighty odd years after the establishment of parent led groups like Mencap, the four organisers worked in the background during the conference. No limelight seeking, egos, photo opps or desire for acknowledgement. They simply want things to be better.

Helsinki Sunday

I was given/awarded? earned? a ‘one off payment’ after filling in a carers assessment form. Wow. A brief letter asked for my bank details to transfer the money. Wow. I picked myself off the floor and decided to tag an extra day on to my Finnish work trip. A day and night in Helsinki. A carers break.

It was fab, fun and sunny.

Today I got a letter from the County Council asking for confirmation that the money has been spent in line with the scheme. Eh? The scheme? With receipts.

Oh.

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Choice and enthusiasm

Beginning to find our way around this choice issue with LB at last. Or just picking up the techniques we used for years before ‘choices’ were relayed through and monitored by a third person.  Yesterday I rang the unit and asked if LB wanted to go out somewhere today. Yes. Good.

This morning, after much thought and discussion with Rich about where to take him (we don’t want to go too far down the route of endless treats and no sniff of dishwasher-land), we agreed the bus museum would be a good plan. A ‘bus museum plus’ plan. A pleasure and pain model.

I picked him up from the unit at 12.

“Where do you want to go then LB?”
“Bus museum.”
“Ok. We’ll go to the bus museum. And then we’ll go to Sainsbury’s after to do the shopping.”
“Sainsbury’s after?”
“Yep. Bus museum followed by Sainsbury’s shopping.” End of.

Nearly four hours of watching mechanics and enthusiasts in action, with a vintage bus ride thrown in. And then a packed Sainsbury’s at closing time. All done joyously.

Don’t you just love buses?

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The Unit. Day 61

Buffet lunch at our favourite Indian restaurant. Fun and filling. And no burgers.

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