Tuesday, 26 February 2013

Who Needs Fairy Dust When Your Kid Is Magical?

I am reading Ruby the Red Fairy’s adventure. At the point where the fairy says she’s been looking for a little girl to help her, Bobby touches my arm. “Boy – a boy to help her.” 

“Sorry,” I clear my throat, smuggling a smile. “Boy to help her.” 

I glance up at Bobby’s bookshelf, where about two dozen similar tales are squashed alongside Horrid Henry, who is no doubt pulling faces and trying to push the twinkling little stories off the shelf, which happens quite spookily at night. 

Bobby is about as blokey as they come. His Skylanders Giants, the most macho looking bunch of cartoon heroes you’re likely to meet, scowl out of the poster on the wall above his bed. A ‘Raving Rabbid’ dances alongside them (never quite worked out the appeal, there). Sonic and Mario take centre stage, arms folded, on the wall opposite. 

And then there are the fairies. 

“I’m not reading you a fairy book,” groans Gavin, reaching onto the shelf for the easiest, quickest story he can get away with before Top Gear starts. 

“Not another Mr Men story!” protests Bobby, but soon perks up because dad is good at adding all sorts of silly hidden extras. It’s my job, evidently, to animate stuff concerning gauzy wings, toadstools and all sorts of other sickly sweetness in a series that’s distinctly lacking in ironic humour.

I’m not bothered. To hell with macho. This is where it all begins for our little autistic guy – the world of imagination! A little later than his peers, he has discovered an entire universe of characters that live at the bottom gardens, inside trees and in fictional places. He is inspired, he is moved – and yet it’s a common myth that autistic children ‘don’t have imagination’.

What’s actually meant by that, is that autistic people can struggle to see things in abstract ways, or from another’s viewpoint. That’s not the same as lacking imagination. Evidence for that statement is Satoshi Tajiri, who invented Pokemon, Alan Turing, who created one of the first designs for a stored-programme computer and countless other current and historical inventors, scientists and creatives. 

However, autistic people do tend to be literal thinkers. They like the solid, the visible, and the tangible and tend to shy away from abstracts that are more uncertain in their nature. Perhaps that’s why the myth pervades that they lack imagination.

When Bobby was two, he enjoyed spinning objects. He pushed cars backwards and forwards. He flapped a lot (he still does, at nine, but only when especially excited). He didn’t understand imaginary play whatsoever. 

In toddler group, whilst others were gathering around the toy cooker making plastic fry-ups, they’d glance bemused as Bobby sat on the floor repeatedly opening and closing the oven door, flapping his arms and bouncing on his bum.  Pretty embarrassing at the time, but he needed no more stimulation than that. It was only when he started showing that he could read and count before he could talk that we realised how bright he was. Even so, at his first autism ‘test’, which he passed with flying colours, the paediatrician got hold of a block of wood and pretended it was a plane – ‘Neeaaaauggggh’, he said, convincingly. 

All Bobby could see was a very stupid adult holding a block of wood over his head. When the block of wood was given back to him, he ignored it, perfectly sensibly.

I can’t remember how long this went on for but I do remember almost fainting with surprise when he first attempted to ‘feed’ a doll (with a bit of encouragement). He wasn’t exactly showing early promise for social work, as he soon threw her to one side, preferring to assess whether a cube would spin on its corner.

At school, Bobby would take little walks round the playground with his lunchtime helper. He wasn’t a loner, and didn’t mind physical play, but stories conjured up from nowhere were a sticking point.  
In the meantime, he was happy to immerse himself in the imaginary world of Mario and Luigi. 

With solid ideas to build on and real figures to play with, he began to extend his beloved screen time with some real life play, using building blocks to create his own ‘Mario’ levels and jumping the characters over them. At school, his teaching assistant allowed him to write Mario stories, whatever the subject matter in literacy. Character descriptions were very factual. Luigi was green; Mario was red and blue – end of.

Autistic kids can be phenomenal when it comes to computers, and Bobby is no exception – this is his strength. Some adults have a fear that computers can make an autistic child even more isolated. But rather than hold him back, his PC games formed a stepping stone into the world of imagination.

Last year, Bobby’s class did knights and castles as their theme. Before long, the oak tree at Bobby’s school became their adopted ‘Dragonland’ and at the age of 8, something clicked. Bobby started visiting ‘Dragonland’ every break time with different friends and having proper ‘adventures’ there. 

This year, the school cloakroom has become his ‘time machine’ (just like in his Horrid Henry story) and a vehicle for history lessons on the days when he isn’t being so co-operative. Now that we have fairies into the bargain, I can’t actually believe that I’m looking at the same boy who stared blankly at a wooden block that day. 

He’s still literal, of course. That’s part of him and part of the autism (same thing). He still worries that a fairy will ask him for help and he won’t know what to do about it. He also has a little prayer that he repeats to himself; hand on heart, like the American national anthem each day: ‘I still believe in fairies, myself, magic and everything else.’ 

And I still believe that autism isn’t a condition which is solid and inflexible, it’s something that keeps moving and changing and adapting with its environment, just like a developing child. So when you read that autistic kids have ‘difficulties with speech, social skills and imagination’, that doesn’t mean non-existent. 

Bobby learnt to talk at four, he gathered social skills that he wasn’t born with like bluebells in a forest of mainstream children and now his imagination is developing, too. 

As parents, we have to keep encouraging and keep believing. Then one day, you might even see something as magical as a fairy landing on your windowsill.

Wednesday, 20 February 2013

A Store Which Puts Themselves in Your Shoes

A friend of mine's daughter works at John Lewis. She had recently mentioned that if you have a child with autism, you can call the store before you hazard a trip to the shoe department and they will have someone waiting.

Since the John Lewis kids' shoe department is usually about as packed as One Direction's mailbag, this was welcome news, especially when Alec's latest trip to the podiatrist revealled that he'd no longer need his special 'Piedro' boots. Joyfully, I realised that he would now be like everyone else, at least when it comes to footwear.

Not so joyfully I recalled the delhi counter ticket that I'd collected on Bobby's last trip to the shoe department, plus his insistence on shouting out every number as it came up in the fashion of some demented bingo caller.

Alec has been in Piedro boots ever since his brain injury in 2005, which happened to him at the age of 2. His 'special' shoes are mercifully rather trendy-looking ankle boots and they're also weighted to help his balance. They've helped him brilliantly - but all he needs now is some in-soles, which I've brought with, and some regular shoes.

This is cause for celebration, I try to explain, as his face starts to pucker whilst we head up the escalator and past the cosmetic ladies in white coats. Pretty soon his mouth is doing that upside down shape that's so unfamiliar to me, and his eyes are filling with tears. Oh no. We have 40 minutes before I need to collect Alec's twin from 'Stop 'n' Play' and this doesn't bode well.

I'd thought that Alec wouldn't need an appointment system. Laid back, passive, Alec. You could drop a bomb on the living room and he'd just raise an eyebrow. He is mostly hypo-sensitive, which means he usually needs sensory stimulation to wake up his nervous system. So not much bothers him. I'd felt like a bit of a fraud asking for the 'autistic treatment'.

Not now I didn't. As his crying turned to screaming and some surprised little faces stared up from their shoes, I realised that Alec had decided that today was to be AUTISTIC DAY. I'd bloody well messed with his master plan of following up a long hard day at school with chocolate biscuits and The Wiggles DVD. I was going to pay for this.

Although most of the staff were busy, fortunately they didn't really need alerting to our presence, as Alec was pretty much an air raid siren by now.

"Are you Debby?" said a voice.

The mum with the autistic kid who's screaming his head off? Take a wild guess...

"I'm Jane, come with me," said a capable, calm looking woman in a soothing voice. She had it covered, I could tell within 10 seconds. Jane led us away from the hectic shoe department and into a large and emtpy children's changing room. She brought Alec some stickers and some posters, which distracted him a bit. She showed him her feet measuring machine. When he didn't like it she took her time with him. By this stage I could have hugged her.

After about ten minutes, Alec finally realised that I hadn't taken him to John Lewis for the specific purpose of having his feet removed.

He started to calm down. He even gave little signs for 'yes' to indicate he liked the shoes. Or more probably, 'yes - whatever - now let's get out of here.'

Jane explained that she had some experience in working with autistic children. It showed. Every time she went away to get some more shoes, she announced her return before she stepped through the curtain. By this stage she had elevated to diety status in my eyes.

She knew what she was talking about with the in-soles too, which was good because I had no idea what to look for. In half an hour, we found some shoes that fitted perfectly. Alec, by now chewing the sticker collection, gave her a little 'thank-you' sign. And we were off, all smiles now, with me mentally reserving a large gin and tonic for myself.

We didn't leave before I'd told the manager what a good experience it had been, and apparently you can phone up John Lewis anywhere in the UK and ask not to wait in the shoe department - if you have a child with autism, that is.

This is the pinnacle of autism-friendly environments as far as I'm concerned. Usually I'd buy cheaper but they got my money because they thoroughly deserved it. I wasn't just paying for the shoes, I was paying for the expertise in handling my child and his needs.

Well done John Lewis. In an age where everything seems so impersonal and slapdash, you have won the heart and mind of one very grateful shopper.