Sunday, 30 May 2010
Living with autism hasn't been easy of late and I've been feeling less than bulletproof.
I'm curing myself with lots of rest, chocolate and the occasional glass of pink wine, so hopefully normal service will be resumed shortly!
We hung our Living with Autism Art Exhibition today in readiness for it's opening on Tuesday.
I'll post further about this, in the meantime, please see our Living with Autism project website:
Living with Autism
Collage by Me
Tuesday, 18 May 2010
My offers of free virtual champagne seem to have paid off. It looks like I'll soon be putting in an order for several jeroboams of champagne. You lovely people have been voting for this blog and miraculously we are in the top five out of one-hundred and seventy eight nominees! So, it's official, Strange & Beautiful is in the final of The MADS.
Voting is now open for the second stage of the MADs at www.the-mads.com, and over the next month bloggers and blog readers will be able to vote for their favourite blogs.
The MADs are all about celebrating parent bloggers and raising awareness of the range of blogs being created in Britain today. The awards are very generously being sponsored by Butlins and my category by Plum Baby.
I'd encourage you to check out blogs in all the categories as there are some real gems to discover.
Here's what the MADs site says about this blog:
Strange and Beautiful is the deeply inspiring story of Rachel who is Mum to twins, one of whom was diagnosed with autism in 2008 at the age of five. Things which normal families take for granted are often very difficult for the family, but the blog reminds us that five-year-old Lyla is still a charming, engaging little girl who brings the family lots of smiles.
So, if you like this blog, please vote now by clicking on the MADS link on the right hand side of this page - there'll be virtual champagne all round!
PS Hello to new followers! I'm in the process of coming round to say Hi to you on your blogs, lovely to meet you :)
Painting by Lyla.
Monday, 10 May 2010
This topic was recently debated on a TV show.
The stereotype of Rainman persists and it is often, wrongly, thought that all autistic people are geniuses.
It is true that the existence of savants or geniuses is five times higher in the autistic population than in the general populus but stands at only 5% of the total autistic population.
So, 95% of autistic people are not geniuses.
So is autism a gift?
The panelists, who had no direct experience of autism, all had tales to tell about people they knew who very laudably 'wouldn't change their autistic children for the world'.
This is very easy for them to say!
The poem 'Welcome to Holland' was read out:
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c.1987 by Emily Perl Kingsley
I think the parents of autistic kids that I know might say it's more like Welcome to Beirut!
Rebranding autism as a gift is nifty get-out clause: It is carte blanche to ignore the very real plight of families living with autism as they have been blessed with a 'special gift'.
Those parents who called into the show or were in the audience were unaninimous in arguing that they felt autism definitely isn't a gift.
Anybody who has read my blog will understand that autism is a tricky path both for the person living with autism and their family.
The precise reason we say this is because we love our children deeply, but is impossible not to feel their pain and living with autism is relentlessly tough.
I have spent whole days sobbing, thinking Why Us?
If somebody offered Lyla a magic wand that would take away the autism, I would give it to her like a shot.
She came home today and cried for 2 hours because her classroom at school had been rearranged, without warning.
She was massively anxious that she'd lost her place in the classroom and was no longer a member of the class.
Lyla is a very precious gift: if I could take away this pain, I would.
Wednesday, 5 May 2010
Yes, we've succumbed again!
After a year relatively free of the horrors of the tummy bug, me, Lyla and Mya have been busily decorating the house with vomit again.
It's a times like these when all it takes is something small to lift the situation.
And today, we had Lyla's Tales of the Tummy Bug.
Being autistic, Lyla can't understand that a bug is a euphemism for a virus or germs.
She literally believes that a bug has set up home in her tummy and now that thought is planted there, no amount of reasoning can remove it.
So, as she's feeling a little better today, she thinks the bug is 'shrinking'.
Later she came and showed me a little green bruise on her hip and asked me what I thought it was - when I said 'a little green bruise' - she looked at me with total disdain, 'No mummy it's where the bug is sitting to lay it's eggs'.
Obviously- how could I have been so dense!.....it often baffles me when lack of imagination is (wrongly) cited as a sign of autism. It's certainly not in short supply here.
Her vivid fantasy universe seems to run parallel to our literal one.
I often wonder if she will grow out of it and 'get' reality.
But part of me hopes she doesn't and stays as lovely and magical as she is.
Picture by Lyla.