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I think the week of the 3rd October the was the worst so far, not for Luke I hasten to add, but for Anne and I.

We had spent the weekend of the 1st October in Brighton and it should have been a lovely time. Indeed bits of it were. When we met with Luke it took us a while to reconnect, as we walked off from his house his hand didn't reach for mine as quickly as he often does. Probably quite rightly too - he is 20 after all. We spent the Sunday afternoon wandering around the Laines going into music shops, having a bite to eat and just generally hanging out. I suppose there's a sense that things are changing and we have started the process of 'letting go' and Luke is starting to find his own way. We should be celebrating and hopefully we will be able to. It's a bit sudden. When it happens. I know we've been dreaming of this for him for years. A college where he can study music, where he can live away from us, develop friendships and an independent social life. There is still a void.

Random recollection - The time before when we went down Luke managed to get stuck in the loo at lunchtime. Entirely not his fault. However he showed remarkable creativity in his way of highlighting his situation. I eventually went to see what was happening as he had been downstairs for a long time and I heard this strange voice coming from the cubicle. Luke had decided that the best way to attract help would be to ask for it in an Italian accent as we were in an Italian restaurant. The inside rotary handle lock was the only way someone could open the door once inside. There was nothing to grip on. The restaurant in question (ZIZZI) still haven't bothered to reply to my email highlighting the potential danger. Imagine if there had been a fire.

One of the things that we hadn't allowed for was how much our family routine has been built up around Luke. Once he left, the temptation to skip tea and head for the shed was often given in to. I was given a potting shed for my last birthday and needless to say it is still waiting for anything to be potted. However there is a nice collection of screw tops building up. Thankfully the recent drop in temperature has helped calm us down a bit and slowly order it reestablishing itself. It isn't just Luke, the others are getting older and are often away. In fact this Wednesday was the first time in ages that the 4 of us sat down to eat together. We didn't sing grace, which we have been doing for years with Luke leading either on piano or ukulele, probably because it wouldn't have seemed right without him there. Alternatively, maybe he has been the one keeping us on the straight and narrow. Even when we sit outside to eat during the summer he would encourage us to sing before eating, which we would do in very muted voices!

All of these feelings were compounded by watching 'A World without Down's Syndrome' and thinking of life without Luke. A long time ago I would always refer to having a child with a disability as joining a very exclusive club for which there is no waiting list. My life has changed in so many unexpected ways since Luke arrived to share it. We have a tandem, I'm in a rock band, I look after this website, I sing grace before meals, I am going to Brighton every other weekend, we have an album out... I'm delighted that I was accepted for membership.

We're going back down this Sunday and then the following week he's coming back for half term. Can't wait.

Just as an update, on Sunday we left him and Barnaby in Luke's room strumming away on their ukuleles. 


Nick Radclyffe writing about Life at EalingHELP on 13 October 2016

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