Friday, 30 January 2015

Chief sub-editor on my case

Chief sub Bobby has just had a go because I misread the names of his Furbies.
Corrected now. I'm useless.

Bobby's Autobiography

Yes, I know that 11 is a bit young to write an autobiography.

Still, you've got to start somewhere. Here it is:

Hi everybody! My name is Bobby Lewis Elley. Here is the start of my autobiography.

3.12.03 I was born then. I didn't even know anything. One minute later, my brother Alec was born.

When I was 4-5 or 3, I went to Kids Unlimited. Then I went to Valley School, then to Outwood School. I was 11 when I wrote this autobiography.

One of my worst times was when Alec fell out of the bedroom window and broke his speech. He had to stay in hospital for 6 weeks or less. I was Special Good Boy (SGB) though. Some of my best times was Let Loose, Game Beast, and Jump Space. I got my 3DS on 10.4.12 I have some pets named Furby Booms. They are called Kee-Tah, An-Koh and May-Boo. Mum wants a cat. I want a hamster.

My hobbies are video games and Pokemon trading cards. I like Mario, Sonic, Pokemon and Ludus.

My favourite fruit are apples. I eat them every day. Also I like Roblox. What I want to be when I grow up is a game tester. Also the other ambitions are to be a teacher. The most important thing in my life is Love. My life is Love.

I'd describe my friends as the most talented, the most interesting and the most special people. They would say that I am awesome! The best day was when I went to Game Beast for my 10th birthday. The things that I am not keen on are 'well done' stickers. I don't know why! But everyone has to be afraid of something.

My family are excellent. I inspire...myself.

My family's names are Gavin (Dad), Debby (mum), Alec (brother), Paula (grandma) and Stanley (Papa). I have lots of unique ideas. But I can't tell them all.

My mum runs a magazine called Aukids with her friend Tori. I hope you like this autobiography world!

Bobby Lewis Elley.

Losing the Hippy Background

Our social network adviser has in the most tactful possible way indicated that the background I've chosen for this blog makes her feel like throwing up. Maybe I was so bored with the old scheme that I overdid it a bit. Maybe this is why rag-rolling and paint effects were so successful in the Eighties. Everyone was bored of stripey wallpaper.

Then they went a bit far in the other direction.

Thursday, 29 January 2015

Why Does He Do That?

SPECTRUMITE TED: Available from

The blog's got a new look - like it? Loud, isn't it? It's designed to wake me up and kid me that I'm some sort of partying psychedelic hippy during the day. Hopefully this will make the ever-present urge to crawl back to bed, which I've been experiencing over the last - er, ten years - a little less irresistible.

One of the things that causes me to head for the duvet is the rather draining and repetitive question concerning either one or both boys, which circles my head almost daily.

The question is: Why does he do that?

Answers range from:

a) I'm pretty sure that I know
b) I've got a rough idea and have narrowed it down to 3 possibilities
c) I've not the foggiest
d) I've not got the foggiest, but does he have the foggiest either?

Now I'm guessing that I'm not alone here, because most of our correspondence with readers is generally along the same lines.

Any behaviour is tolerable as far as I'm concerned, if I've got a reason for it. Knowing the reason makes it easier to deal with and easier to help as well.

That's why so much of AuKids is geared towards answering the 'Why do they do that?' type of question. We're guessing you think like we do. We don't want to know a bit more about it, or moan about it for two pages. We want to know WHY!

That's why we did an article on visual distortion in our January issue. It's a confusing quagmire of a subject. The deeper you get into it, the less you understand. There are also loads of confident claims about what helps with visual distortion, yet what we came across was that there just isn't enough scientific evidence to back any type of intervention 100%. There's far more written on dyslexia than on the sorts of visual distortion that our kids experience.

What's all the more difficult with pre-verbal kids experiencing visual distortion is that they can't tell you what they see. Consequently you only know if something helps by a change in their behaviour. Even then, how do you know that it's down to the intervention you've given them?

Drowning in research, I nearly gave up tackling visual distortion. Then I came to think about what our readers really want. They want to know WHY.

I came across one paper on the subject that made real sense - Olga Bogdashina's brilliant summary of the sorts of visual distortion that autistic kids can experience. We shortened it, made it easy to digest, and added the best information we could find and some easy ideas to try at home before parting with your hard-earned cash for something more expensive.

We're already onto the next 'Why...?' for April's issue.

Our experts are currently scratching their heads on the subject of mysterious tears. You know, the ones that seem to come from nowhere, seemingly without cause. With other kids, crying is so often an obvious consequence. Not so with ours.

Expert Dr Heather MacKenzie, who lives in Canada, has pointed out that we are in arrears with the Cadbury's chocolate bars we send to her as payment. This is because I keep on eating it.

Off to the shops tomorrow to put that one right...

Friday, 23 January 2015

Choosing Words with Care

The first thing to note about this week is that Bobby is acquiring decent taste in music. We've never really had 'tot' music in the car (except for in emergency when stuck in traffic jams). This wasn't down to any particular yearning on my part to Hot House my kids to excel in Eighties music.  It was more the case that car music keeps me sane and always has done. I wasn't ready to kiss goodbye to that small measure of sanity. My car - my music. The rest of the time I have to listen to Furbies interacting with each other, Mario screeching round corners, This Old Man on the keyboard, The Wiggles... The car is the exception.

Having said that, if Bobby likes a tune, he puts it on repeat. And there's only so many times that I can listen to A-ha's Cry Wolf without knowing how the wolf feels.

The second thing to note about this week is that Bobby has been an S.G.B. three times in a row. SGB is Bobby's own term, which has now entered the teaching assistant's dictionary of Bob-jargon. It means Special Good Boy. He gets awarded SGB when he does all his work without fuss.

This week's the first time he's had any SGBs since the start of the school year, which gives you a rough idea of how Year 6 has gone so far. Some work, a lot of fuss. By the way 'fuss' is Teaching Assistant understatement for 'heckuva scene'.

Bobby's Teaching Assistant, M'lanie, has a way of putting things that makes even the most heinous of crimes seem quite innocuous. In M'lanie-speak, the Second World War would be referred to as 'a bit of a row'. Using this understatement, she's never made me feel bad even on the days when she's had to ring me up from school.

JUST CALM DOWN, EVERYONE: Bobby's teaching assistant needs to be a UN Ambassador. She would see to it that all world leaders drink cups of cocoa and live in peace without any unnecessary tantrums.

It's always: "He's a bit up and down." Up and down arrows in Bobby's communication book are all that I need to tell me that she'll be lying down in a darkened room tonight muttering to herself and reconsidering her profession.

You can't underestimate the mental effect that words can have on a parent. If you know your son's been tricky, the last thing you need is someone bashing you over the head with the news with a giant verbal frying pan.

Anyway, I've learnt to read between the lines, and if Bobby's humming to himself at some distance away from me in the playground and not making eye contact when I collect him, I know there will be an up/down set of arrows in his communication book. It's as clear as the guilty look written all over his face.

If I knew why Bobby's been able to get three SGBs in a row this week, then maybe I could influence a positive outcome in the future. Unfortunately, not even Bobby knows why he has had three SGBs. I suspect it's a mixture of me being calm at home (as Alec is less difficult this week) and the SATs practice papers, which he loves. Exams suit Bobby because of the definite structure to them.

He may well be granted extra time for his SATs but it's unlikely they'll grant him an extra week, which is what he seems to be requiring at the moment. M'lanie reported that a maths question goes something like this:

Lanie: "I have two parcels, each cost £1.50..."

Bobby: "Are they Amazon or Ebay parcels?"

Lanie: "Amazon."

Bobby: "What's in them? Is it something I like?"

Etc. etc. etc.

I was speaking about this to Tim on Thursday, as I supported him at his warehouse job. Tim is our researcher and packer and has autism. He works for AuKids and our sister company Time Specialist Support (which Tori runs) and he also works in a warehouse for a High Street chain. He has a support worker there and occasionally I step in.

Tim told me that his problem with maths questions at school was that they didn't look like maths questions, they looked like English. They weren't just numbers - (16 x 4 =) - they were scenarios, like 'I have 5 packet of crisps and 3 friends...' This confused him.

I thought he had a good point. Maybe we need to take one step back and explain to Bobby that there's a hidden maths question here, and that this is what's important, not what's in the box. Autistic people are not great at filtering out which details are most relevant to a situation - it's an inability to generalise and see the bigger picture that can make them struggle.

I had a bit of a chat to Bobby about this, but he corrected me. "No - I know it's a maths question. It's not English!" Durrhh mum.

"So you just like talking about what might be in the parcels then?"

"I don't really want to talk about it."

Could it be that I'm exaggerating Bobby's difficulty here and his main trouble is actually staying on task? Which is why he is very very good at procrastinating?

We'll see when it comes to his next homework.

This week's homework is making a Box Troll. Fortunately, the warehouse shift gave me a good excuse to walk away with some good materials for this little project.

All I can say is, I hope it doesn't require too much of a fuss.

Friday, 16 January 2015

The Prize at the End of the Obstacle Course

I often think of my life with autistic twins as a bit like an obstacle course.

The starting gun was fired at diagnosis - and we were off! Weaving in and out of appointments, crawling under the net when it came to teaching social skills in a gentle way...jumping through hoops to get them Statemented, crawling through the tunnel of language acquisition slowly but steadily, climbing a tall wall to understand the whys and wherefores of behaviour, with all the slipping points along the way, and splashing through the sensory quagmire that defines Alec's brain.

Some weeks it feels as if I'm on an obstacle course like this 24/7. You've just emerged triumphant from one little issue and another pops its head up. To use another analogy, it's a bit like playing ping pong by yourself with a few too many balls.

I felt like this this morning, as I knew that I had to be in two places at once. Drop Bobby off at school, then drop Alec at school, then whizz back to Bobby's school for his first appearance in assembly for about a year. He had made a special request that I turned up, and being late obviously wasn't an option. The whole operation that involves getting Bobby to stand up in front of people hangs in such a delicate balance that a little thing like me crashing in ten minutes late could upset the entire (momentous) occasion.

As if sensing my hurry, Bobby pipes up in the car: "Mum, what is God?"

Because that's the sort of philosophical question that I really want to answer at 8.45am on a Friday morning when I have to be in two places at once.

Still, I made a passable attempt at an answer that nodded to his need for something that wasn't too abstract.

Flying back from Alec's school, I was cut up on a roundabout by some rude woman who had no idea that my life was an obstacle course. "YOU CERTAINLY AREN'T IN AS MUCH OF A HURRY AS ME, LUV!" I cursed, as my car skidded on two wheels towards the school.

Jumping inside the school hall, I was just in time to witness the opening moments of assembly and experience the warm feeling that happens when Bobby's little face recognises mine and adopts an 'all is right with the world' expression.

There aren't many moments when you get to see very clearly how far your little person has come in the last five years - this was one of them. Bobby, the one who was always doing the opposite of everyone else; Bobby, the one who used to fly off the stage the minute his line was over, or who refused point blank to join his friends at the front. The one who not so long ago had dragged a fellow cast member off the stage by his leg...Here he was, introducing the class presentation. Saying his lines loudly, clearly, with feeling. Then leading the singing right at the front, at the top of his voice - remembering all the words, confident and clear.

And then finally, the piece de resistance...running to centre stage at the end and thanking all the parents for coming (including his mum, who got a special mention), finishing with a deep bow.

Sometimes I stagger under those obstacle course nets, I climb those tricky walls even when I really don't feel like it, I crawl through tunnels when I've had better days and it seems like everyone else has it so much easier.

And then he does that.

And it's all worthwhile.