Day 57: My son’s not rainman #107days

Day 57 has been adopted by John Williams, an incredibly funny man and casual baker  whose blog will make you laugh and cry: ‘John is a comedian and single dad. His son is twelve years old and autistic. He isn’t a genius. His only special power is making his Dad laugh. A lot’. We were delighted when John got in touch to offer his support to the #107days campaign, after all LB is short for laughing boy. LB, whose giggle captured the hearts of so many, so if you’re going tonight (or if you spend the day reading John’s blog – highly recommended) please laugh long and laugh deeply. It’s very special that we have a day of intentional laughter and stand-up comedy within the 107days.

This is what John had to say about getting involved:

I had been following Sara’s blog for a couple of months – it had been recommended to me by a friend. I was struck by the warmth of it, as well as the writing. Incidentally, this was, and still is, my favourite blog post. And then I remember the day Sara posted that LB had died. I remember the numbness that followed the initial punch in the kidneys, this strange feeling of mourning someone who you hadn’t met but you felt in some small way you knew.

As the days, weeks and months followed, and Sara continued to share their story, the treatment of the family by those responsible became difficult to comprehend. It moved from the realms of incompetency to something far more sinister. To this day I am dumbfounded by the behaviour of Southern Health in all this. On every level. They’ve become like the King Midas of healthcare, only in their case everything they touch turns to shite. I can’t even begin to imagine the indescribable pain of losing a child, but their behaviour and inability to take responsibility and even just-bloody-say-sorry is akin to continually poking at an open wound with a stick. Katrina whats-her-face, “Chief Executive of the Year”, bloody shame on you.

I suppose if I’m honest there’s a selfishness behind my getting involved in LB’s story. In many ways my own blog is the “acceptable” face of autism – heartwarming stories of the life of me and my son. At times it seems we live an almost Peter Pan existence, he’s the boy who’ll never grow up, and Dad’s so embroiled in the battle with the education system that he never thinks for one minute about the world beyond it. But LB’s story has brought things into focus. It’s made me confront my own fears for the future. The seemingly terrifying world of Adult Services beckons sooner than I care to acknowledge.

And so for Day 57, and my plans. I’ve written a blog about LB on my website. And tonight I’m performing a show at the Kenton Theatre in Henley that is dedicated to Connor. I’ll share his story, his video will be played and when his brilliant face fills the big screen and the Divine Comedy blares out across the auditorium the audience will be in no doubt as to why he was called Laughing Boy. I’ll donate my fee for the night and sell his postcards in the interval and generally pester and badger people like a great big pain in the arse to get involved and ensure they shout Connor’s name across the rooftops as they leave into the night.

We learned yesterday of the very sad death of Stephen Sutton, an incredible young man who has left a legacy that will live on well beyond his years. Well Connor Sparrowhawk was also an incredible young man, and we must do all we can to ensure his legacy lives on for a long, long time to come.

And so I’ll leave you with the same request I made on my blog this morning. Make a point of telling someone Connor’s story today. Set up reminders on your telephones 1, 5, 10, 20 years from now to keep his memory alive. Let’s ensure his legacy is to lead to lasting change for the young people and adults that follow.

Let’s keep saying his name.

Day57JW

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