Tuesday, 26 July 2011

A Poem For My Twin

By Mya, Aged 8

You are the smell of a rose
that tickles my senses every day
You are the energetic labrador
that loves to play.

You are the bouncy castle
that I love to watch every evening
You are the soul of Brighton waves
that I picture when I'm dreaming.

You are the twinkling stars
that brighten up the midnight sky
You are the beautiful flowers
that I cheerfully love to buy.

You are my sister
and this is a poem
all about you.

Thursday, 16 June 2011

Why is Autism Trendy Right Now?

'Mum, you know that award that's in the downstairs loo, the one you got for blogging',

'Yes, Lyla'

'Well, that proves that you've tried very hard to understand me- some people don't, you know?


'Yes, some people don't care about autism at all, but you do...and I mean it you know, mum I mean it here, right here in my heart'

I catch my breath. Sometimes things Lyla says are so direct I'm momentarily stunned (of course, it helps that she's saying something deeply complementary....!) The conversations which start with a statement like 'So you never remembered to put suntan lotion on when you were young....that's why you've so many wrinkles' tend to be batted off by a mental reflex which has processed far greater insults.

It made me wonder though, how well people understand autism?

It's certainly a hot topic in the media at the moment- especially if your guilty pleasures extend to an addiction to the Mail Online. Enough said.

It's something that Todd Drezner addresses in Autism: The Most Popular Disability

He suggests that autism is a surprising disability. Parents start thinking they are raising a typical child.  But when they get the autism diagnosis, they they are forcd to examine and confront their ideas and preconceptions about disability.

I'd also suggest that autism is the subject of cultural fascination because at it's core, it's enigmatic. We might understand the theory of the triad of impairments, but still be totally incapable of reaching a person with autism and getting inside their world.

Can we ever really understand autism?

Since no two people with autism are the same, that would be a very difficult thing.

Of course we can understand common themes, that people with autism share, but taking the time to understand a person with autism, to interpret their behaviour, and give them what they need takes an awful lot of time and determination.

If a rise in awareness of autism leads to other people caring about autism and valuing kids like Lyla  that will be a very good thing.

Thursday, 21 April 2011

Review: Secret Agent Society Computer Game

As I mentioned in my last post, I was sent a copy of the Secret Agent Society Computer game, which teaches emotions and social skills to children aged 8-12.

One of the clever features of the game is that it taps into the fact that a large percentage of autistic children are obsessed with visual mediums such as TV & computers.

One of the core deficits in autistic children is Theory of Mind, the ability to understand what others are feeling and that others may feel differently from us. It is sometimes called mindblindness.

The SAS game aims to teach these through different scenarios: facial expression recognition, voice tone and body language.

We've been playing it for about a month now and Lyla really enjoys it. The only caveat I have is that I think she has taken the game completely literally and thinks she really is in training to be a spy. Something I will have to address in due course!

The games also feature live missions, where you put your skills into practice in the real world- absolutely vital for really learning social skills.

For instance, Lyla has a mission to spy on people she sees out and about and try and work out what they are feeling. This comes with the instruction to the child not to stare as you may blow your cover as a spy, which very cleverly avoids the problem of your child getting into trouble for harrassing people.

I've bought Lyla a little spy notebook, which she fills in her missions and it provides a context for us to talk about social situations.

The only stumbling block that we came across was that Lyla found the facial recognition part of the game very difficult and she needed to pass that level to move on. The game guide recognises this and suggests you do the game with your child, to keep them on task (although obviously you shouldn't answer for them). I found that sitting beside her, giving constant encouragement helped a lot and she was absolutely thrilled when she finally passed the level after days of trying!

The SAS game is really well thought-out and fun for kids. You can find screenshots, video outakes and lots more on the SAS website.

Thursday, 14 April 2011

On Streetdance & Stress Levels in Combat Soldiers

A fellow autism mum recently drew my attention to some research which has shown that mothers of autistic children demonstrate similar stress levels to soldiers in combat.  I'm sure there won't be many mothers of autistic kids who will be surprised by this. But it did cause me to pause to consider how different my life is from the norm.

On a happy note, we are just discovering one of Lyla's hidden talents. She's become obsessed with streetdance and won a dance-off at school. Her talents were also spotted by a professional at a party- Go Lyla! I, on the other hand am showing my age by asking questions like, 'what's a G6?' Answers please....

I also attended the inaugural Queensmill Lecture delivered by Professor Roy Grinker. Grinker is an anthropologist, autism parent and author of 'Isabel's World', a survey of how autism is viewed worldwide.

It was an inspiring evening- Grinker is very hot on de-stigmatising autism as he believes that this is the primary problem facing autism.

I think most parents would agree the treatment of disabled people as a whole needs to improve.

A recent incident which springs to mind is the unpleasant sexual jokes Frankie Boyle made about Katie Price's autistic son Harvey on his now-cancelled Channel 4 show. 'Jokes' about the benefits of killing disabled children have also appeared on BBC's QI recently. Nice.

Thanks for your always-interesting comments on my last post. I agree whole-heartedly that we need to accept our kids for who they are. But I'm always open to hearing about stuff that can help Lyla.

And I was excited by a game I was sent to review call SAS: Secret Agent Society. In brief, it's a computer spy game which teaches social skills, more to follow in a full post soon....

Hope you're enjoying the Easter sunshine!

Thursday, 3 March 2011

Meeting the Billy Graham of Autism*

I'm sitting in a packed, airy lecture theatre, waiting for motivational speaker and erstwhile autistic Raun Kaufman to appear.

The atmosphere is fidgety- it feels like we're waiting for a gig at the Roundhouse, rather than in this large school room in the middle of Regent's Park.

Having forgotten how quick early London traffic is at weekends, I've arrived early and enjoyed a quite cappuccino at the modernist park cafe.

Septuagenarians perform Tai Chi- I like this and a family of five park their bikes outside the window.

Watching them, I ask myself the question often on my mind, usually suppressed 'What if?' What if I had a normal family instead of sitting here waiting to spend my Saturday like this? What if we could go cycling together without somebody going kamikaze straight into the road?

But I stop myself, this is my life. This is our normal.

Cheery banners 'Cure Autism!!!', signpost the way to the lecture theatre and I feel my eyes well up- I, like so many other parents so wish there was a cure.

It's a crisp winter day and the huge, ecclesiastical windows around the room remind me of Larkin's High Windows.

Rather than words comes the thought of high windows:
The sun-comprehending glass,
And beyond it, the deep blue air, that shows
Nothing, and is nowhere, and is endless.

Then I stifle a grin as I think of the rude bits at the beginning of the poem.

For the uninitiated, Raun Kaufmann was diagnosed with autism as a young child and his mother cured him of autism through a self-devised intensive interaction programme that they later named 'Son Rise'.

He is an engaging speaker and far less evangelical than I'd expected.

Son-Rise is essentially a behavioural therapy, where the parent/ therapist tries to enter the child's world and bring the child into their world.

As a therapy, I think it has a lot of things to recommend it. I used the 'mirroring' technique on Lyla when I got home. After looking at my quizzically asking 'why are you copying me' she got into the spirit of it and said it was the best play session ever.

Like many autism treatments, the Son-Rise programme has it's detractors. There's controversy over Kaufman's 'recovery' and what some see as their hard-sell methods.

I have to say that although there were very serious-looking, besuited people hovering around the auditorium with clipboards, Kaufman himself was very likeable and when I met him afterwards and did seem to genuinely want to help people with autism.

One of the before & after videos showed a 'severely autistic' child. To me, the child seemed less autistic than Lyla, who is not severe,  and was in the middle of a tantrum. The after video showed him smiling.

This is very much short of proving that Son-Rise cures autism, but if it led to an improvement in this little boy's mood, then that has to be a good thing.

The Son-Rise programme is eye-wateringly expensive, especially if you want to visit Son-Rise-Ville in Massachussets, USA and certainly out of reach for us and most people.

If you like the Son Rise approach, there's some useful and more importantly, free information that you can access on their website.

*I've just realised that some of you who are not in the same (middle) age-bracket as me might not know who Billy Graham is: he's an American evangelist who was very prolific in the 60's & 70's. Writing that makes me realise that that was actually quite a long time ago!

Thursday, 3 February 2011

Autism & Sleep

Beautiful & Strange

Just when you think you're getting your life back together something always happens to knock you off your perch- or so my Scottish granny never tired of saying...

When life is stressful, there's nothing worse than broken sleep. As soon as Lyla started school after the Xmas holidays, she stopped sleeping at night.

Just like that.

From sleeping through (with medical help), she suddenly stopped sleeping.

And I've started turning into a zombie.

Lyla has always had sleeping problems and two years ago she was diagnosed with Melatonin-deficiency.

Melatonin is the sleep-hormone which causes people to feel drowsy in the evening and fall asleep.

Melatonin-deficiency is very common amongst autistic, ADHD and also blind kids. The theory is that melatonin production is light-dependent. This explains why blind children don't make it. For children with certain types of autism or ADD/ ADHD, it appears that the brain doesn't process the light properly and so either doesn't make any Melatonin or doesn't make enough.

Melatonin supplementation, under medical supervision, can be highly successful, (indeed miraculous!)  and induces normal sleeping patterns.

This all sounded a bit barking to me when it was first diagnosed, but it's another instance of just how pervasive autism is- it really does affect every area of a person's functioning.

So, that's the science bit.

However, the drawback with the preparation that Lyla takes is that is wears off after three hours. So, she's started to wake up just as we're going to bed and running around the house, shouting, wanting to play and waking everyone up.

Having a hyperactive child shake you out of a deep sleep, when you're already exhausted brought back unwelcome memories of endless sleepless nights with newborn twins.

For the first few nights, we survived on adrenalin, but after a week, utterly shattered, we realised that this wasn't a one-off: we had to take action.

Lyla suffers from quite severe Sensory Processing Disorder and unless she performs vigourous exercise every day, she is restless, anxious and hyperactive.

Until now, we've scheduled this into our day, but since she broke her elbow in November, she's not been allowed to exercise until l the screws that were put in her elbow have healed up.

Now Lyla can keep going on no sleep whatsoever, but Mya can't and neither can we. So, we took the decision to resume Lyla's exercise programme.

I'm pleased to say that after  two hour-long running sessions, Lyla has started sleeping through again and I'm looking forward to life returning to (our version of!) normal.

Tuesday, 11 January 2011

What are you doing for You in 2011?

Collage from Wordle Cloud

Following on from my last post where I talked about how I dealt with feelings of exhaustion, I wanted to share a few plans I have for 2011.

Having decided to stop battling with a busy schedule and do less, I've been wondering how I can put this into practice.

Last year, I did a few online courses, including the Experimental Art Course by Amelia Critchlow, who is a friend of mine.

I've always been creative, but like a lot of people, got put off art at school when my drawings didn't match up to how I wanted them to be.

Since having kids though, I've found myself having as much fun as them once the paints come out. So, I thought I'd take the plunge and see if I could go any further with my art.

The Experimental Art course takes you through Sketchbooks, Drawing and Doodling, Painting, Collaging (something I loved!) Photography and Contempory Art.

I really enjoyed my forays into art, which is why I'm going back to do the course again this month.

I've posted up some of the artworks I made on the first course here (including the picture which is now in the banner for the blog!)

Finger Painting


Also, on a more serious note, the proposed government cuts will drastically and detrimentally affect autistic and disabled, some of the most vulnerable in society.

Shockingly, there has been no consultation with any of the main charities such as the NAS over the dismantling of services and benefits needed by people with autism.

In repsonse to this, the ACT Autism Now campaign group has been set up to record the cuts in services to people with autism and their families.

You can help directly by recording how the cuts are affecting you.in your area.
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