There Isn't A Right Time, But There Is A Good Time...

"So anyway mum about that new Pokemon X and Y game..."

This morning, I was forced to conduct a 12-point turn out of our driveway due to a post van parked in not such a sensible place behind me. I was doing this in an unfamiliar hire car which isn't fitted with Debby-proof maneuvering alert sounds and all the while Bobby was asking me something about installing Pokedex Pokebank or something similar.

We had roughly five minutes to get to school in the British summer sun (which does actually exist, it has proved this week) and the air-conditioning in my temporary tin can on wheels (which Gavin actually likes, he's on his own here) was making a horrendous noise and not appearing to actually do anything.

In other words, a classic case of neurotypical overload.

"You're stressed," observes Bobby, pointing out the obvious (but not to him so let's give him credit) and all the while adding to it by:

a) pointing it out and
b) asking me why I didn't get the garage guys to come and move the car for me and
c) going on about Pokedex Pokebank as if that's actually going to have a calming effect.

As I roll up to an unforgiving line of rush hour traffic, I decide to chat to Bobby about his all important timing.

"Bobby, you know when you're feeling a bit stressed about something and then I ask you to do something and I might ask you to hurry up. You know how your brain goes on overload and you feel even worse and you may explode? Well it's the same for me when you talk about Pokemon when I'm trying to get you to school in the morning. I just can't focus on what you're asking me to do. You see there's a right time and a right place for saying things, and this really isn't the right time. Can you think of when a good time would be?"

"When you're more relaxed?"

"Exactly! Yes, when I'm more relaxed."

Bobby waits until the car comes to a standstill by the traffic lights...

"So, I'd really like to download this Pokebank for my Pokemon and it works with the DS because..."

"Bobby, I'm still stressed!"

"Oh."

Choosing a Good Time Social Story

I guess he thought that because the car had stopped, my entire focus could be extended to him. Or else he thought that I'd probably agree to anything at this point, which is why he picks on me and not his dad when there are new things to be downloaded.

I pointed out that I think he needs a Social StoryTM about the right time to say things, so here it is - see right. I've been careful to refer to a 'good time' to ask me for things rather than a 'right time'. For a start, there is never a right time to ask me impossible questions about Pokemon software but I may just have to live with that.

Secondly, choosing a good time isn't really a black and white skill but requires an element of sensitive decision-making. There is no such thing as right and wrong here, but if Bobby can improve his chances of getting my attention then he should give it a shot without feeling anxious that he could be 'right' or 'wrong'. After all, I'm as guilty as he is of occasionally being way too excited about a new idea to notice that someone else is in the middle of something.

Will let you know if this does any good...in the mean time, Bobby kindly brought in Mr Huff Puff to help me cool down on the journey into school.

Ever Had That Sinking Feeling?

It's 10.30pm and the fact that I haven't opened a bottle of wine is totally to my credit, having spent a full day in the company of Year 5 Outwood School on their school trip to Liverpool's Maritime Museum.

Excuse me one moment whilst I shut my husband up, who can be heard downstairs shouting at the TV (and England haven't even had a match yet)...

Reasons why I decided to accompany Bobby on his school trip:

1) They were off to see the Titanic exhibition and I was very interested in it
2) It's been a while since I did anything to re-establish my good name as a pillar of the community
3) His teachers are a lovely bunch and I was feeling altruistic

Things I didn't consider:

1) Twenty-eight neurotypical ten year olds (give or take a few).
2) Twenty-eight neurotypical ten year-olds on a coach
3) Twenty-eight neurotypical ten year-olds in a gift shop with limited spending money and no calculators to hand.

Myself and a little (no bother) group who'd been assigned to me started the morning at the back of the coach composing the next chart-topping hit based on our school trip.


Then Jahmahl, Bobby's mate, started adding rap terms such as 'chow', the girls started singing Katy Perry's Roar and the whole thing started to resemble a 21st century version of Kids From Fame.

"Did you show me pictures of the place beforehand?" asked Bobby, pointing out with the subtlety of a brick through the living room window that I'd failed to prepare him for this trip in the usual way. I used to make him picture stories but he's pretty laid back about it all these days. He just enjoys pointing out that if I ever wanted to promote myself as the Perfect Spectrumite Mum, the trade description people may have something to say about it.

Eventually we disembark and after roughly a year of trickling along Albert Dock and into the building, we are met by a fierce looking woman in Victorian costume who leads us to a quiet part of the museum in order to tell us of her first hand experience of being on the Titanic and surviving.

Uh-oh, I can see it happening. She's in full swing playing the part and although my eyes are focused on the back of my son's head I can clearly see that confusion is written all over his face. Bobby won't have fully registered what the heck is going on here. Anyone who acts without firstly announcing it in capital letters is likely to be taken at their word.

It's still fresh in my mind what happened in Year 2, when Bobby shouted "FIRE FIRE EVERYONE OUT!" after hearing about the Great Fire of London.

One of Bobby's mates knows him only too well. "She's ACTING Bobby, she's ACTING."

This Bobby accepts quite readily but then joins in the spirit of things a little too loudly and gets sharply reprimanded by her. Of course, every time she says something he has a little chirpy come-back, and he's not intending to be naughty, he just can't keep entirely quiet - and he's heading for big trouble when his teaching assistant takes the museum guide to one side and explains that Bobby's autistic. She stops reprimanding him then, thank goodness. I was fully expecting Bobby's starfish act (adopt said pose in the middle of the floor) and a massive meltdown to accompany it, but he was just a little embarrassed by her ice-like attitude. Such a difference between ages five and ten, it's unbelievable.

The high point of the entire day was when our guide showed us how those in the post room tapped out the Morse code signal for help.

"Who knows what the Morse code signal for help is? Which three letters?"

One boy's hand shot up: "It's L.O.L." he says, without irony.

Hey, we're sinking - it's bloody hilarious!!

When In Doubt, Call on the Little People

ARRGGGH, a bomb's about to explode! What to do, what to do? I know, I'll call in the bomb diffusal expert, Mr Diffuser. He takes my temper and works calmly to diffuse it. Then he covers it in ice with his special gadget, the Ice Shooter.

After that, Mr Huff Puff will come in and blow lots of cool air through his vapour cloud so that I can calm down.

Meanwhile, Mrs Translator's Silver Spoon gadget will take the nasty words that I want to say and convert them into a less angry tone that explains my feelings.

Have I gone mad? Quite possibly. But this idea isn't my own. It comes from a rather impressive book I've just read called The Homunculi Approach to Social and Emotional Wellbeing, by Anne Greig and Tommy Mackay.

The Homunculi are little characters that you invent yourself. Their strengths are your weaknesses, their purpose to fly in when you're losing control, take control using their gadgets and soothe the situation.

It's a clever technique using meta-cognition, the ability to analyse our own thoughts,  see them from afar and change our own ways of thinking.

Tommy MacKay is the Director of Psychology Counsultancy Services and Visiting Professor of Autism Studies at the University of Strathclyde. Rather refreshingly, he admits in Chapter One that when faced with a difficult task he used to call on a number of imaginary people to help motivate or organise him. From this arose the idea of Homunculi, the Latin term for little people.

The book shows how an entire programme for children with autism can be based around the Homuncili, but the minute I came across it, it occurred to me that I could immediately begin using it at its most basic level to Bobby's benefit.

At AuKids we're great believers in any technique that helps self-regulation in autistic people, and this approach made perfect sense to me. It's a way of getting an abstract way of thinking - the sort of approach we may use without realising it - and making it very concrete so that autistic kids can develop their own coping strategies.

I got straight onto Jessica Kingsley Publishers and asked the authors to write something on this approach for AuKids, which happily they agreed to do. It'll be published later this year.

The next step was to show Bobby the Homunculi approach. Bobby loves Pokemon and I reckoned all I had to do was compare the two and we'd be laughing. I showed him the free poster that I received with the book (a really clever drawing of the inside of a skull, showing it as a kind of control room where the Homunucli team work and rest) and then I beamed. Great idea, huh? What d'ya think, son?

Amazingly, he wasn't impressed. "I've already got my own ways of doing things," he declared.

"Yes and they're very good Bobby, but they're ways of coping AFTER an explosion. These little people can help you cope before you get to that point."

Still not impressed. And the thing is, the keener I get on an idea the more suspicious Bobby tends to become. I have to be a bit more clever than that.

I was so convinced that this approach was tailor made for the likes of Bobby, that I adopted my usual back door approach. I made some of my own Homunculi - hence the characters who started this blog entry - and I told him he could call on any of them if he liked, at any time. He doesn't want to call on them, he says, 'they're yours'.

Tori suggested that my Homunculi could arrive at the scene of a bomb scare chez Bobby's brain without being invited, which I think is a top idea although not exactly what the authors had in mind.

Bobby was interested enough to help me with my own problems though and made me an extra character - Mr Replacer, who works with Mrs Translator. He carries cards which have polite words to use instead of nasty ones. Sometimes I wonder just who is parenting who.

I raised my voice last week (I'm sure more than once) and promptly got told that I needed Mr Huff Puff.

Then today I had the unwelcome result of my car's MOT. When I expected a glowing report, my car came bottom of its year - and the result was not at all cheap.

I was positively fuming, especially at the somewhat smug way in which the news was delivered by the garage receptionist. I was stomping about the house and the smoke had started to come out of my ears when I suddenly realised that I needed to call on my little friends. Suddenly there was ice around my temper bomb and it had been diffused by a Cyberman-style character who was highly efficient.

And yes - they helped! I will make more of them! They can be my inner management team, my little life coaches.

I'm hoping that before long, Homunculi will become a part of family life, so much so that Bobby may even start to borrow or invent one once in a while.

Until then, it's not a bad idea to have some help with self-regulation when you've got two young kids on the spectrum.

So I'm pretty pleased that my little friends are here. As far as I'm concerned, they can gatecrash the party any time there's trouble in the attic!

The Autism Gardener

HOLE IN ONE! Hit a ball into the future, you'll be glad when you get there

My kids are the subjects of a series of little ideas and trials, snippets of inspiration to help make life a little easier.

My philosophy is very similar to any gardener's. Always nip any behaviour that you think might become troublesome in the bud. If you see it before the bud stage, so much the better. Whatever you do, don't wait until it's in full ruddy bloom with a never-ending maze of roots.

That doesn't mean to say that you should focus on every tiny thing that isn't quite to your liking either. The trick I've found is to know the plant, or in our case, the problem. This little shoot you've got here...Should it grow into a bigger plant with stronger roots, what will it look like? A bloody nightmare? Then deal with it now.

Bobby is now ten and so I'm a pretty keen gardener right now. That's because I'm mindful of the fact that in a year's time, his little problem plants will be re-potted into secondary school. Without his terrific teaching assistant all over them with her secateurs, we may get into trouble. Plus, teenagers are typically resistant to intervention. Better get in there with a hoe right now!


Quite a lot of what I'm tackling with Bobby is impulse related. Like many people on the spectrum whose executive functioning is a little off-track, he finds it really hard to sort out the necessary and important tasks and do them before the stuff he likes. He's not alone here, by the way. His neurotypical friends are very similar. The difference is, they will naturally learn impulse control as they mature. Bobby may need some help in developing it, so getting in there early is a good start.

One idea that Tori came up with has been a massive success and I'd highly recommend it. Simple as heck as well. He has a laminated list of the six things he needs to do in the morning in order to get ready for school. After he's ticked all the boxes, he can do what he likes until it's time to leave. The advantage for him is that whereas before I wouldn't let him play on the computer before school (too absorbing), he now gets computer time providing he's done first what he needs to do. To help make it more attractive, the jobs each have a Mario figure by them.

Bobby loves ticking off his little list and the morning nag has stopped altogether. I can actually trust him to get ready without constant verbal (highly verbal!) reminders.

The interesting thing about this is that what started off as quite a mechanical operation - tick the boxes, get what I want - has actually engrained itself into Bobby's thinking to the extent that he now sees the point of getting the unwelcome jobs out of the way first. Any extension of that idea in the future will probably be welcomed. So, to coin a gardening phrase, it is as well to sew the seeds early.

The second little snippet of inspiration came after finding that Bobby continually failed to understand what was expected of him at school and why.

On some days he does next to nothing and doesn't worry at all that he's falling behind with the week's work. Increasingly, he's using the 'autistic' card as a Get Out of Jail Free card! He is special, he's very special and he's lovely, but he's not beyond using autism as a tactic in his growing quest to do as little as possible.

Bobby, like most autistic kids, doesn't respond to any kind of pressure, so it's not a good idea to suddenly tell him that he has loads of work to do, or to make him feel as if he's failing. Instead I've come up with a little chart (see below). It's designed for him to fill in with his teaching assistant and it lets him know exactly where he needs to be in order to complete his work and get the rewards he wants. Instead of Bobby seeing his schoolwork in terms of either outright success or failure, we have defined the grey areas in between. Exactly what is enough and what is not enough? To complete this key task, what is it that we expect you to do? And also - an extra added by Tori - what is the learning objective behind this? Why is it important that we're doing this?

In autism, if it causes confusion, nail it down. Make it visual, give an explanation.  So much of the time I see Bobby floating in uncertainty. Verbal explanations just aren't enough  - he'll ask the same thing a few days later. "Why do I need help?" Well, now we can point to the tasks on his chart, where he's up to and show him where the difficulties were.

IMPULSE CONTROL: Bobby's daily task list for school

Day one and the news is that the chart is going well... Once Bobby grasps the concept of priorities, it'll enable him to define his own in later life. I'm not going to assume that it'll suddenly come to him when he's 21, so every tiny bit of gardening that we do now will reap rewards in the future.

How can I be so sure? Because for every bit of gardening we did when he was five, I've witnessed those encouraging results now he's ten.

ps Today, a couple of happy faces, one neutral face and one sad face. 'I can't remember what the sad face was for,' said Bobby. Yeah, right.

Frazzled and Minus Coffee

The word for this morning is 'Frazzled'.

With Bobby in a heightened state of tension, the only thing I can do to improve matters is to absorb it. I think that's what most of us do.

Unfortunately it leaves me needing a double espresso at 9am and there's no coffee in the house.

I've been thinking about Bobby's temper a lot lately, as it's central to many of his problems. Although he has great insight when he's calm, he flies off the handle so quickly that this isn't much good when it comes to a challenging situation.

And unfortunately for Bobby, situations that the rest of us wouldn't find challenging are extremely troublesome to him.

We are experiencing what Dr Heather MacKenzie describes as a 'disconnect'. Bobby knows the right thing to do, he just can't do it when it comes to the crunch. He has difficulties with self-regulation as a result of his autism. As a result, so do I. But at least I have strong coffee to fall back on.


Yesterday, Bobby hit a teacher. He did this because she was shouting at a group of other kids. When general tensions are raised and there's a lot of noise, Bobby cannot think of himself as separate from the stress that's going on. He becomes part of it, even if anger isn't aimed at him. He finds shouting very threatening. Well, we all do, but I guess we can see it in context. To Bobby, it's just rather unpredictable behaviour.

Most of the teachers know to remove Bobby if they are about to shout at someone else. This one didn't, and got walloped. I can understand why. It was the only way to stop her. We need to do some work with Bobby on how he controls his inner moods so that they don't translate into outer aggression. He needs to develop that inner dialogue that we all use when we want to hit someone, but we can't. Sometimes autistic kids can't develop this for themselves, and need a bit of help.

So, I wrote him this Social Story, which I am sharing with you in the hope that if you experience something similar, you may be able to adapt it for your own uses.

My World is My Own Again (From 9am-3pm)

So, half-term is over. I love the way that schools time the holidays. I've usually just recovered from the last one when another pops up, usually with an inset day (or 'insect day' as Bobby insists on calling it) thrown in for good measure.

And so the world's worst blogger resumes her rightful place at the computer and notes without surprise that the last time I updated this blog was Christmas. My excuse is that I'm not blogging my life, I'm living it and my twins take up most of my spare time.

Even when I'm actually on the computer, looking very much like someone trying to concentrate, it in no way deters them from barging in here with a collection of tried and tested means of distracting me from work.

Alec's method is simple. Open door, lollop up to mum and mug her. That's the most effective way, when the arm around my head won't even let me view the screen let alone type. Sometimes he's more polite and just pointedly bashes a Fireman Sam DVD on the desk.

The other morning I was woken up to the sound of Alec's gentle vocalisations (not words exactly, but they managed to sound urgent) and when I opened my eyes, there loomed above my head a four-wheel drive vehicle of the sort that Alec loves to zoom around his room. On closer inspection, a wheel was entangled with a 'twiddly' string, in this case a Chewigem necklace.

Alec loves to twiddle string and had no doubt combined his two loves to unfortunate effect. I carefully detangled the 'twiddly' and he lolloped happily out of the room, with no further requirements.

Bobby's attempts at interrupting me from work are worse than Alec's. That's because I know damn well that I won't get any work done whilst Alec's in the room (although he's not as fascinated by the PC's 'off' button as he once was).

Bobby at first gives the distinct impression that I'll be free after answering one small, simple request, but this is highly deceptive. Actually, he plans on being in here forever.

Bobby saunters in and says 'M-u-u-u-u-u-u-u-u-um....' in the sort of nagging tone that makes me realise I'm not going to get away with ignoring him.

Since he's autistic, I spell out what he's failed to see. 'Bob, mum's trying to work. You can see that I'm looking at the screen and I'm trying hard to concentrate, and you should be in bed.'

'Yes but M-u-u-u-u-u-u-u-u-u-u-u-u-u-u-u-u-u-u-u-um...'

'What is it?'

'You know the bla blablabla bla bla bla bla Sonic bla bla bla bla platform bla bla bla bla download bla bla bla bla want it bla bla bla bla bla Furby Boom bla bla blabla....'

Look, I'm a patient mum. I am - really. But once it gets past 9pm and he's in pyjamas, I don't feel like tuning into Bobby's second language. Most of the time, we do collide on the same planet at some point, but when it comes to technical stuff, we don't. Usually, even if I concentrate fiercely, I can't quite make out what he's getting at.

I haven't quite worked out whether this is because what he's saying is simply too technical for me, or whether he doesn't know quite what he's talking about either.

So, I do what all good mums do.

'Why don't you ask Dad about it?'

A doubtful look ensues. Probably he's weighed this up already and decided that I'm the softer touch. Bobby ignores my suggestions.

'But Muuuuuuuuuuuuum.... Bla blablablablablablablablablalbalblabala bla Sonic blablabla Furby bla blabla updated version blabla bla abla AVAIBABLE (means 'available') blabla bla Jahmahl says blablablabla'

'Bobby! I am trying TO WORK!!!'

I am amazed at how little Bobby is sometimes fazed when I lose my rag. At times, a slightly raised voice is enough to make him hit the ceiling. But when he has his mind set on drilling some information into my brain, nothing seems to put him off. It's like the wind of my fury is howling past his cheeks, making his hair stand on end, and still he firmly stands his ground without so much as a raised eyebrow.

'Okay okay, keep your hair on mum! Jeeeeez, calm down.'

Me keep calm? ME keep calm? I have spent ten years of my life trying to keep HIM calm. Now that's what I call gratitude.

I use the last little drop of calmn left in my body (and by this stage, whatever I was planning on writing has floated off into the air never to be seen again).

'Bobby, it is not a good thing to try and ask mum about these things when mum is tired at the end of a long day, because I can't listen very carefully. It is better to ask me when I'm relaxed. Ok?'

'Ok. Will you do it tomorrow?'

(Deep sigh) 'Yes, tomorrow. Now off to bed.'

'What you working on?'

You can probably understand by now why it was that I virtually skipped into Bobby's classroom with him this morning.

Alongside himself, I delivered Bobby's substantial luggage - a bulging schoolbag that included some model Furbies that 'help me to concentrate on work'; a loaf of bread and bag of apples for snacks (inexplicably, Bobby's autism means he is allowed to make his own toast) and his PE kit.

The homework during the school holidays had been to create a collage of your favourite book for World Book Day, including reviews, photographs, pictures, quotes etc.

It took us three days of negotiation and two painful hours to complete, but ours was all Bobby's work. All I had done was to help him to plan it. He wanted no glitz or glamour but tolerated getting his hands messy to make some purple hands for his piece on Horrid Henry.  The result was respectable if not exactly stunning. Bobby has only recently begun to talk about characters in his literacy work. Until now all he could say was what a character did. Buzz Lightyear, for instance, was a space ranger toy. He couldn't think about whether he was brave or a leader or any of that.

He's just about got as far as saying that Horrid Henry is 'Horrid' and with further thought 'likes voilence on TV'. I could say a few things about Horrid Henry myself, like if he was my kid I'd teach him a thing or two - and I could also say a thing or five about his parents (who, according to Bobby, need AuKids magazine). But very unfortunately it's not my homework. Literacy isn't Bobby's strength and they are all his thoughts, noone elses. That's all that matters.

This morning, I could see the other kids putting their posters into a pile on the teachers desk, with her delighted exclamations at each one. There was glitter, there was glamour, there were three-dimensional stick on bits.

'I'VE DONE MINE!' said Bobby, getting his face as close to Mrs Larkin's as he possibly could. 'I'VE GOT MINE TOO!!' and he proudly placed it on the pile, to her enthusiastic reception.

I mentally looked heavenwards. Yeh that's right Bobby. Take all the credit for it when I could have had more fun pulling teeth than trying to steer you in the direction of a single written description.

But there we go. He's in school. He's done his homework. Everyone is happy. And I can look forward to a day without twiddly entanglements and technical negotiations.

What's Figgy Pudding Anyway?

 So here we have my ultra-talented son Alec in his starring role as Joseph. Anyone who wants to argue against him being ultra-talented needs to consider the following facts:

1)    He can eat five ice-cubes at once without wincing

2)    Can twiddle absolutely anything including a DS case that should by rights be un-twiddlable

3)    Is able to elicit sympathy from the most hard-hearted of souls with the merest flip of the lip

4)    Has turned me into a mind-reader without me even trying

These are traits that he shares with other autistic kids. So if you’ve not been showing off about this sort of stuff, you need to ask yourself some serious questions.

Alec is always included in his special school plays along with the rest of the pupils and it’s annually amusing to see the sheer wave of indifference that floats off him for the entire length of the show. Lights, action, music, audience…all of this is as about as welcome to him as a sprout after Boxing Day.

As mentioned before, he has turned me into a mind reader. So much so, that I’d swear he walks around with a thought bubble over his head, because I can read it even from our hidden vantage point in the back row, carefully chosen so that he doesn’t spot us and get even more distracted than he already is by the tea towel sitting on his head, with ear defenders securing them in place. And if you think this is a little out of tune with the times, consider that Joseph was a carpenter and probably endured a fair share of noise pollution from all that sawing.

Reading Alec’s bubble at this very moment, it appears to be sending many messages. The first, most pressing, is ‘Why have they put this cloth on my head?’ The second is ‘If I time it just right I can duck out to the toilet just before I’m due to hit the dizzy heights of stardom, which I firmly don’t want’ (this wasn’t strictly mind-reading, but experienced guesswork from what’s happened on two earlier performances). The third is ‘How long before I get a mince pie?’ Alec’s thoughts usually drift to food eventually.

Before we know it, he is roaming around on the hobby horse that represents a donkey and being gently steered away from the audience. He’s had a good look at the ‘baby Jesus’ and poked at its eyes a bit. Then he’s sat bemused but willing whilst the kings sidle up but fail to offer him any stuff to twiddle.

As applause surrounds the cast and his dad and I proudly congratulate him (he can’t hear because of the ear defenders and the tea towel) I’m wondering how much of this is actually meaningful to Alec.

Especially as he’s Jewish.

But that’s not to say it shouldn’t happen at all, because I remember well the first heart-swelling moment when I saw him take to the stage and thought ‘Our little dude is in a school play!’

Each child in Alec’s school has been through such a personal journey, full of frights for both themselves and their families, experiencing hopes and limitations – boosting one whilst trying to break down the other. This generally happens throughout the year, every year – and you never quite get used to the fact that your offspring comes with an inbuilt battle.

For one hour – and I’ll admit that at times that hour seems more like two – all of these children are doing the same as others throughout the land; getting through a seasonal production in a somewhat ramshackle way, and taking a bow at the end.

Whether they understand it or not, it’s beautiful to watch. Especially for the parents. It'll be an unconventional Christmas to many of us, but that doesn't mean that it won't still be filled with happiness and shared delight.

Happy holidays, readers!