35. The Curious Incident of the Dog in the Night-Time …….. and The Reason I Jump

 

At the beginning of this month I found myself in the Horse and Stables pub in Westminster Bridge Road, London (first having driven to Woking via Bristol!) and, ultimately, taking part in a “furthest flight by a paper aeroplane” quiz tie-breaker. The following day I reprised the Westminster-Woking-Bristol-Eccleshall odyssey. Yesterday, Saturday,  I was in London for the Annual General Meeting of a UK based charity. Tonight (right now in fact) I am musing over my latest blog post and tomorrow I will journey 4 hours by train to Torquay on the south coast of England, returning home by Tuesday lunchtime. Surprisingly, all these events, plus my participation in Clipper and even the title of this post, share a common theme.

But first of all back to the pub.

In a team comprising my son (Alastair) my ex-brother-in-law (Andrew) my niece (Sarah) and her boyfriend (Spencer), I attending a quiz organised and compered by my eldest daughter, Heather. This is something Heather has organised for at least the last 3 years but this was my first attendance. As a quiz team we dragged up answers from the dim recesses of memory (some more deep than others); applied “Granny’s first rule” of quiz answers (which roughly translates as ‘if in doubt write down the first answer you thought of’); and when memory or Granny couldn’t help we opted for the good old fashioned option – blind guess. Nobody was more surprised than me when, after 6 rounds, we finished joint first with a rival table. So to the deciding tie-breaker …… “please not another music round” I remember thinking. How about another sailing question? We had already been lucky enough to escape cries of “fix!” when the answer to one general knowledge question turned out to be “spinnaker.” No such luck. Drum roll please ……. the entire evening was to come down to a paper aeroplane “who can fly the furthest” competition.

The first fly-off was terminated following an unexpected collision with the shoulder of a spectator. First aid was not required and decks were suitably cleared. On the second flight our aeroplane quite definitely flew the furthest but, on “landing” the opposing aeroplane skidded along the floor furthest. Cue heated discussions on what actually counted more – flying or furthest! OK – third and FINAL flight. Our opponents went first and delivered a flight that the Wright brothers would have been proud of. Nothing left but to really go for it. On launch our aeroplane promptly executed a loop the Red Arrows would have been proud of and promptly ……… flew backwards DOWN a flight of stairs to the main pub floor one storey down. Our subsequent claims to have actually flown the furthest distance were discounted on the not altogether unsurprising ruling that we hadn’t, as a point of fact, even crossed the start line!

Yesterday I attended a charity AGM in London. I listened to the presentation of the annual report and annual accounts led by Dr Carol Homden CBE, the Chair of Trustees, and further presentations by the Society President, the actress Jane Asher, and the CEO, Mark Lever. I learnt about the success of the  “Too Much Information” campaign. I learnt about the success of the charity’s engagement with 5000 UK businesses/retail outlets offered thousands of opportunities for friendly shopping. This project was repeated last month and 11000 businesses took part. In the afternoon I listened to two particularly powerful presentations.

The title of this post is in fact two titles. Both are books. I read the first sometime ago. The Reason I Jump is my current read.

Tomorrow I will travel to collect my 26 year old daughter Rebekah.

And the link between these things and with my participation in Clipper? ……………… Autism.

Heather’s quiz is now an annual fundraising event for the National Autistic Society. This year it raised over £725.00. Next year it will likely coincide with the start of my Clipper Leg 3 from South Africa to Australia. We are “negotiating” a donation to my justgiving page next year and those of you with grown-up daughters will understand what I mean by “negotiating!!!” My only other advice? Standby for unconventional tie-breakers.

The AGM was the National Autistic Society. I learned a great deal. The “Too Much Information” film campaign reached over 10 million people. Over 6 million were reached by the film “Make It Stop.” Last month 11000 business/retail outlets took part in “autism hour” offering thousands of opportunities for autism friendly shopping. I also listened to the concerns of elderly parents whose autistic ‘children’ are themselves in their 50s and 60s. The afternoon presentations were by Paul and Michael Atwal-Brice, parents of 2 sets of adopted twin boys, the eldest of which were diagnosed Autistic shortly after adoption, and by Adrian Edwards who delivered a talk entitled “My right to be who I am and how I want to be.” Adrian talked about the challenges he faced as an undiagnosed adult and how this led him to his own assessment of autism. Adrian is also a father of an autistic son.

The Curious Incident of the Dog in the Night-Time was written by Mark Hadon and published in 2003. The novel is ‘narrated’ by a 15 year old boy on the autistic spectrum. The Reason I Jump was written by Noaki Higashida in 2007 and first published in Great Britain about 5 years ago. What is most remarkable about this book is that Noaki is severely autistic and he learnt to communicate via pointing to letters on a ‘cardboard keyboard’ – he was only 13! What he says gives an exceptional insight into an autistically-wired mind. As one reviewer put it, “The Reason I Jump” was a revelatory godsend. It felt as if, for the first time, our own son was talking to us about what was happening inside his head.” I wish I had read it years ago.

My youngest daughter, Rebekah, is autistic. She was diagnosed by the age of 3 after early development that had appeared entirely as expected. She tried main stream school, which did not work, but ultimately enjoyed a fantastic placement at Bidwell Brook special needs school in Devon. She is now 26. She lives in her own place with 24 hour supervision. Rebekah is extremely physically capable and loves the gym, swimming, walking and pretty much every form of art. I think her comprehension and understanding is good, but I cannot be sure …….. Rebekah cannot read, cannot write and does not speak. I don’t really know, even after 20 years or so, what it is like to be autistic; what it is like to be Rebekah. I am still trying to find out. But when Paul and Michael and Adrian used words like “inconsolable”, “frightening”, “fighting”, “fairness”, “exhausting”, “labelling”, “anxiety”, “incongruence”, “expectation”, “societal judgement” and “preconceptions” in their talks yesterday, I not only recognised the words but I could identify with each one an incident or time in Rebekah’s journey.

On Friday I gave a telephone interview to the National Autistic Society PR team about Clipper and my own efforts to raise money for the Society. My personal message on my JustGiving page makes the point that the money I raise will not go directly to Rebekah, or her care team, but I hope it will be put to good use by NAS for others on the autistic spectrum, and their families, and to the NAS policy unit to help their ongoing efforts on behalf of all in the UK on the spectrum.

During the interview it struck me that on those times on Clipper when I am frightened and all my senses are overloaded as torrents of water break over me, perhaps when tired, cold and working at night thousands of miles from safety, it might be the closest I will ever come, even if only for seconds, to the anxiety and sensory overload that I am often told “is autism.” Ironic that in those seconds I may in fact be closer to Rebekah than I have ever been but at the same time thousands of miles apart. I’m looking forward to seeing her tomorrow.

http://www.justgiving.com/teams/keithsclipperadventure