The Sunshine Boy/Mother’s Courage. Talking back to autism

I made a few mistakes watching this film. I watched it the day before Archie’s birthday, while alone in the house with a bottle of wine, having not had much to drink for six months. I then decided it would be a really good idea to post a sort of running commentary on Twitter. You know, just to ensure total public humiliation. Oh how I laughed the next morning.

Anyway all that aside this is an incredible film. A documentary narrated by Kate Winslet it tells the story of Margret who travels from Iceland to Europe and America in an attempt to better understand and help her severely autistic son Keli. Along the way she meets  Temple Grandin, Simon  Baron-Cohen and  Catherine Lord as well as families living with non-verbal autism who are using typing and letterboards as a method of communication. Towards the end of the film Keli is introduced to a letterboard and now is able to write poetry.

Kate Winslet was so touched by Margaret’s journey that she started The Golden Hat Foundation   ‘a non-profit organisation dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable’. The name for the foundation came from one of Keli’s first poems:

This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.
end

Keli Thorsteinsson

If you watch one film on autism this year make it this one. Although I howled my way through the diagnosis scenes this is a film that sends a strong message of hope.  It’s not yet known how many non-verbal people with autism have the potential to type as it’s not something that’s really been tried, indeed it has been discouraged.  The prevalent view of severe autism is still that if you can’t talk you have nothing to say. More that that, you are not capable of having anything to say. Films such as this challenge this view while organisations such as The Golden Hat Foundation provide us parents with support as we explore our children’s competencies and potential. Important stuff.

A challenging film, it’s also quite a challenge to view it in the UK. Currently you need a multi- region DVD player.

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Surfing

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When Archie was first diagnosed we could only think about life in neurotypical terms. Everything we did was with the aim of working towards normality, and a life we recognised as worthwhile. We researched (and tried) therapies, we read up on ways to encourage speech, to work on language to search for the answer (we thought there was one).  As the years passed it became obvious that normality really wasn’t going to happen. Archie is 12 now, still non-verbal and still requires a lot of day to day help.

By the time Archie was 8 it was becoming pretty clear that his life is likely to be a severely autistic one and we needed to start living it. We needed to deal with the fact he was severely autistic and stop waiting for him to be magically high functioning enough to suddenly be able to access mainstream activities. We also began to understand that a life doesn’t have to be so-called normal to be worthwhile – he has a good life now and there’s no reason that cannot continue. And so since then, slowly, we’ve increased the activities we do. It seems like a small thing, but when I became a Mum I imagined doing things that were fun with the kids, not hours of autism therapies and so we began to drop those and focus instead on experiences. After all isn’t this is what life is about – a series of experiences?

Which brings us onto surfing. With Archie being non-verbal with challenging behaviours  and limited awareness of danger- surfing didn’t exactly leap out as a potential activity. We’d never have tried surfing with Archie  without the surfers going out of their way to encourage participation. Initially he was able to go on a few trial sessions at an annual event called Breaking the Barrier – which to our surprise he loved, now he goes out regularly with a local surf school, and occasionally even with me (yes, the surf school has been giving us lessons).

Sometimes he rides on a an extra long board and the surfers can pull him up to standing, other times he goes out on a 9 or 10 foot board, gets pushed into the wave and then is on his own. He’s quite happy to scoot along on his tummy or kneel and with a lot of encouragement and yelling from us will occasionally try to stand.

He gets a real buzz from it. These days  I tend to think his autism isn’t such a problem in itself, it’s a pain when it stops him being able to do things, especially fun stuff-of-life activities, so surfing is one of the things that has made a real difference to his life and all our lives.

We’ve been surfing this morning, and life is good.

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