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This has been without doubt the longest time between blogs since I took over at EalingHELP. It also happens to be World Down Syndrome Day.

The break started with a chat about an incident which raised all sorts of concerns about the double sidedness of sexuality and vulnerability that can affect people with learning disabilities or difficulties. I had always understood the idea of our children being vulnerable to people with predatory intent. What I hadn't understood was how this works the other way and the vulnerability can come from the inability to understand, process and/or deliver clear messages about what is and isn't acceptable. It wasn't until recently when I went along to Mark Brown's excellent talk on puberty for the EPCF when I understood the extent of this problem. Huge amounts of work need to be done in all environments where people with learning disabilities are supported. So often it is easier for these issues are ignored or swept to one side. When trying to address these concerns with the people I work with reactions can vary from childish giggling to firm rebuttal. 

So, whilst that was going through my head, Christmas then came around and we had Luke back home for a couple of weeks. It's strange even though he sticks to his usual routine and we see him only when he comes downstairs to eat, or maybe watch a movie, there's a difference to the way the house feels. After taking him back to college at the beginning of January we then had the shock of my Mum suddenly dying very unexpectedly. We decided not to tell Luke at the time so he wouldn't have to process his grief and feelings away from us. Right or wrong? We decided to tell him once we'd organised the service as we would bring him back home for that. As it happened the service didn't happen for another month and he was back home for half-term. On the Friday, once we had picked him up we told him what had happened and he observed that I was now 'parentless'. He's always had a great sense of occasion! About an hour or so later he came back with a poem that he had written which floored us all. Just a way of expressing things that is so unencumbered, so direct and so powerful for all those reasons. The following Wednesday he stood up at the service and read his poem out beautifully, clearly. One of my brothers said that in some ways they wanted the poem to be read but at the same time they didn't. As though hearing it, in some way, exposed our very innermost vulnerabilities.

Luke also had an appointment with his neurologist over the half term as I'd managed to get some video of him during one of his absences. The suspicion is that these are temporal seizures and we now have to monitor the frequency of these episodes before deciding what to do next.

Luke heading back to college

Luke heading back to college after the half-term

I love this picture. Heading off into his future and whatever that may bring. With his lopsided grin. Luke continues to use poetry and song to express his feelings and reactions to his world and the things happening in it. He mentioned one that he's working on at the moment when we were there last weekend. Sounds like it could be another that hits very close to the mark. Not only that but he taught me a chord on the ukulele!! The band are working on a tune at the moment that is based on a text exchange we had towards the end of last year. Clandestine Archways. 

You can see this is turning into a list of excuses. Then we had the Ealing INFO Fair at the end of February. I won't add anymore to what has already been written on the subject but I will note that the site generally seems to suffer a bit whenever we have a project like that running. Although this time the work that I did in creating the new pages for the Fair has had some useful side effects in terms of the site now being a little more flexible in the way information can be distributed.

So here we are. Not really edited highlights but life continuing to confound our best attempts to make any sense of it.


Nick Radclyffe writing about Life at EalingHELP on 21 March 2017

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