Yesterday we went Christmas shopping at Bluewater. Well, we went to Bluewater... and went to the cinema instead. The film was called 'Rise of the Guardians'. It's a cheesy animated film about the Guardians (Father Christmas, the Tooth Fairy, Easter Bunny and Sandman) enlisting the help of Jack Frost to stop Pitch Black from engulfing the world in darkness. All we have to do is Believe...
It was crappy American schmaltz and I loved it. But the highlight wasn't even the film itself. All the other kids were at school yesterday, and we had the place to ourselves. An old couple hobbled in, her using a stick and holding his arm for support. They sat two rows in front of us. And I reckon they must have been late seventies/early eighties. She hooked her walking stick on the back of the chair in front and they made themselves at home with their bag of Pic N Mix. I thought they must have got the wrong film and would realise their mistake at any point. Then the lights went down and the film started. And they didn't move. In fact, for the next hour and a half they giggled and oohed and aahed as Sandman was lost to nightmares, the Easter Bunny was shrunk down to a tiny rabbit and the Tooth Fairy lost all the teeth. And when, towards the end a child finally believed in Jack Frost I'm sure she wiped a tear away from her eye with a tissue. At the end of the film they got up to leave and she turned round to us both, beaming with joy. "Brilliant", she said. And the two of them shuffled out.
And it looked like they did this every week, sneak into cartoons while children were at school and laughed and lost themselves in the moment. And it made me wish that more people were like them. Whoever they are, they brightened my day. And now I Believe too...
The Boy had two friends over at the weekend. On Saturday, The Boy Who Likes to Hum came over. On Sunday, The Boy Who Can't Control His Temper took his place. Various topics of conversation took place over the weekend. These are some of my favourites:
Sometimes I wonder what to write on here. Do I moan about the wheelchair access getting to Winter Wonderland in Hyde Park yesterday? Or do I focus on the brilliant time we had when we finally got there? Should I write about how The Boy has been kicking off all day because a Christmas Tree should have all the same decorations of the same colour on the same branch? I was pondering all these things when I came across the article below. And I decided Thomas's story is more important than any of it:
Trust Me: Aspergers is No Gift
Now make sure you go ahead and read it. I'm going to move some decorations. Again.
Everything is relative. We all have people to look up to, and to look down on.
Last night I did a gig for a very good friend, Liam Smith. It was a charity fundraiser to raise money for the Rett Syndrome Research Trust (http://www.reverserett.org.uk).
Rett Syndrome affects girls from around their first birthday, just after they have learned to walk or say a few words and begins to drag their development backwards.
Over time, those who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won't work, leaving them without the ability to make purposeful movements. Most girls with Rett Syndrome survive into adulthood, becoming increasingly more disabled over time. Invariably, they need one to one, 24 hour a day care for the rest of their lives.
There is no cure for Rett Syndrome.
Liam's daughter Louise has Retts. She came along to the gig last night with her mum, Julie, to say hello before we started. And every time I see the three of them together, I'm overawed and humbled by their strength and love for one another. Retts affects approximately 1 in 12,000 females. And in that sense Louise is one of the unlucky ones. But to have Liam and Julie as her mum and dad who care her for her so much, whose love is obvious in everything they do, who work tirelessly to fundraise and raise awareness... she's the luckiest girl around.
There's lots of work being done to reverse Rett Syndrome at the moment, which is why there is a real push for fundraising. You can donate here: http://www.justgiving.com/rettresearch/donate
Everything's relative. Thank you Louise.
This blog is about bringing up The Boy. He's 12 years old and autistic. It's written by The Dad. It's my words, my view. Other people will think differently and have different opinions. Good.