Tuesday, 29 May 2012

My Own Little Phone Hacker

It's become a quest of increasing complexity, a bit like following the soap around the bath, to stay one step ahead of Bobby when it comes to computer games.

Fortunately, Gavin knows quite a bit about cyber safety. Unfortunately, so it seems does Bobby.

Having been banned from accessing the internet via his 3DS (you've heard all about this, but it's because you can't block sites), he's far from given up getting round the system. I don't think we've exactly got a Pentagon hacker on our hands, but give him a few years. Gav is going to have to chat to the school, because he keeps on finding unsuitable games on their computers.

Bobby's downfall is being a bit too proud of his work. Yesterday, after a lovely day with two support workers, which the boys spent in the park, picnicking and swimming (and which I spent catching up on all the stuff that I can't get done during the hols), Bobby showed me a film he'd taken on his camera. It was a film of the babysitter's Smartphone and what it was showing, was Mario and Luigi Vice City.

As you can probably guess from the title, this isn't exactly suitable viewing. It wasn't a quality Pirate video but from what I could see it involved his fave cartoon characters running over innocent bystanders and picking up prostitutes.

I can't stand these scumbags who make a living out of doing evil spoofs of children's cartoons. I know I sound like Mary Whitehouse but you have to be pretty careful with autistic kids in particular. Bobby has the language now, but not the emotional maturity of most eight year olds and I wouldn't give this to any eight year old.

Technically, he's already more gifted than me. What the heck will he be like when he's older? As Gav said, with Alec we have to keep one step ahead physically (hence the gym for both of us!) and with Bobby we're just going to have to become technical geniuses. I'll leave that one to Gavin.

Maybe I should just relax and wait for the new Steve Jobs to rake in the millions....

Monday, 28 May 2012

Come Dine With Me (I'd rather not)

"Mum - Alec's eaten my stickers!"

Bobby has a phobia of stickers actually being stuck on him. If some unsuspecting teacher tries to stick a 'good boy' one on his uniform, he responds as if she's attempted to fix a tarantula on him. But he doesn't mind them decorating the walls by his bed. Not that I asked him to do this, mind you. But still, it's his space. So his complete Skylanders sticker collection is there - in order. That was, until Alec ate one.

I have to say, that considering he's autistic and likes things 'how they are', Bobby is very tolerant of Alec wading through a line of neatly lined up Go-Go figures (watching the 'cinema' = Bobby's DS screen). He also manages to be perturbed rather than overwhelmingly angry when Alec eats his stickers. He seems to have an inbuilt understanding that it's not really Alec's fault and that Alec doesn't mean to be naughty.

Of course, it is a bit Alec's fault. Somewhere in there, he knows damn well that his brother's Skylanders collection is not on the menu chez Elley.

Talk about not fussy. Alec will scoff virtually anything. Lately, it's ice cubes. This is far better than iced biscuits, I reckon. He fills his cheeks with them and seems to enjoy the freezing sensation, not to mention the crunch. A sensory seeker's life is full of fun if you can just find the right stuff to amuse them with.

Alec's been busy helping me in the garden the last few days. Boy, does he love that hose. He's given the plants a drink, the neighbour's conservatory windows a drink, our back door a drink, my clothes a drink and the shed a drink. Oh and himself a drink. If there's a hosepipe ban in the North West, it'll be Alec's fault.

After a draining day in the sunshine on Sunday (all those who say via email 'Enjoy the sunshine!' have obviously never had two autistic kids to entertain in the 30 degree heat), I went to fix the evening meal and found a singing Father Christmas in the saucepan cupboard. Bit surreal. I remembered suddenly that I'd hidden it a few days previously. Alec seems to have chosen the blisteringly hot summer to take a liking to a Santa toy singing 'Jingle Bells' very loudly. Is 'Dashing Through The Snow....' really what you want to hear (a million times) when you're applying suncream?

The most interesting thing Alec's ever eaten, I mused, as I prepared an actual edible meal, was a load of glitter. We'd been making Christmas cards and he had dunked his face in it before I realised. Not only did he look like Mark Bolan, but he was chewing thoughtfully as well.

I was fascinated in a sort of scientific way to see whether what came out the other end looked festive at all, but it didn't.

So stickers, in comparison, are only slightly inconvenient.

Of course, I realise that part of his fascination with different textures is that Alec needs to chew. Sensory feedback - and a lot of it - is really important to him. So I got a number of special needs necklaces for him to chew. He didn't chew them, he preferred the Play Doh.

Half the fun, I think, is that you're not supposed to do it.

Friday, 25 May 2012

A Little Change Does You Good

Bobby and Alec went to their separate schools sporting the Men In Black look today. Bobby was rather disappointed that his dark glasses weren't 3D. "I'm sure they are a bit...." he said, squinting at Horrid Henry on the TV. "Hmm, I can't see very well. Should have gone to Specsavers! Ha hahaha!"

The theme of the day at Alec's school is royalty, since it's their jubilee party. Having seen him in shades, I'm only sorry that I didn't dress him as the King of Rock 'n' Roll. I reckon Alec would look rather good (if a bit over-heated) in an Elvis all-in-one.

Bobby doesn't like change much (somewhat of a pre-requisite if you're autistic), but I've got used to persuading him that what he thinks are big changes aren't really big at all.

He has a little competition with headteacher Mr Cunningham every morning to see who's got the most interesting socks on. This has become their little friendship signal.

This morning, I proudly showed Bobby a new sock drawer full of interesting socks to replace his tired old ones. There were ones with neon stripes on, animal ones and even a Thomas the Tank Engine pair (Alec nabbed the Percy ones this morning). Rather than looking delighted, Bob said "...and where are my old ones?"

To be truthful, Bobby isn't that interested in clothes and we've never had much of a problem with a new coat or new shoes. But this guarded response - whilst not a total freak-out - isn't unusual, it just shows a slight discomfort with change, which is understandable. "Ah, they're still there Bobby, I kept the nice black ones but threw out the ones that were too small. Is that ok? Look - do you want the elephant pair on?"


"Oh, ok, look let's just put these boring old stripey ones on, then." Describing them as stripey was accurate. Boring and old they certainly aren't, they're brand new with neon pink strips across them. But the 'boring and old', said in a reassuring way, was enough to make him happy and by lunchtime I know - for sure - that he'll be showing them off, having adapted to the change.

I respect the fact that Bobster doesn't like change and that it makes him feel uncomfortable. This doesn't mean that I'm going to let him spend his life shrinking deeper and deeper inside his comfort zone, though. I know from experience (because my husband is a bit like this) that Bobby's default response to anything new is 'No'.

That 'no' doesn't actually mean 'no', although he thinks it does at the time. It means 'I'm uncertain I'll like it so I'd best play safe.' If you give him a get-out clause, like 'We'll try it for half and hour and then leave if you don't like it', you usually end up with a happy boy with a new favourite place to visit.  And of course, it teaches his brain to be a bit more flexible and that change doesn't always mean a threat.

This doesn't mean forcing him to do things when he feels distressed, it means spotting the uncertainty and respecting the need for security.

As he walks to the car, I remind Bobby that we're going to Alec's jubilee party this afternoon (his mainstream school, his brilliant school, has given him and his support assistant permission to attend with me).

"Are we going home first?" he asks. This is what Bobby likes - not hopping from place to place but getting back to base in between. Unfortunately this isn't always possible in the real world.

"No we're going straight to the party and then straight home!" I reply breezily.

It doesn't get past him.

He stamps his foot (slightly hilariously, if it weren't 8.40am) on the drive and has a mini tantrum.

"Look Bobby, we'll collect Alec, then you play your DS at home," I reassure him, getting him into the car.

Gav adopts the same breezy tone, we are used to getting Bobby through this stuff, it has become our own routine and over the years we've perfected responses to his rigidity, although at first it was hard.

Gav's main tactic is distraction through humour. Combined with my explanations and reassurance, it seems to do the trick. "Bob - everything's fine - it's all normal. Should have gone to Specsavers!" Bobby giggles a bit, but it still uncertain.

But the words 'popping into the party' will placate him later and once he sees the cake - he'll be sold.

Thursday, 24 May 2012

A Little Thanks

Thank you twins, for teaching me the twin virtues of patience and unconditional love.

Even when faced with a floor full of Rice Krispies.

Wednesday, 23 May 2012

AuKids Does The Apprentice

So there we are - Tim, Tori and I, the AuKids magazine gang, chatting away in the very salubrious setting of the coffee lounge at Bredbury Hall, awaiting the hoards of conference-goers, as you do... We're here for the Greater Manchester Autism Consortium conference, which hosts professionals from all over the area. We've got special permission from the organisers to have an AuKids stand here, which is very nice of them. Only, noone's here. In fact, they're all walking straight past us. The one or two that drift towards us then suddenly realise that they're lost.

It's a bit like being in a Spinal Tap film. "Shall we move the stuff?" suggests Tim, rather obviously. I look at my careful fan-like array of AuKids pens. Tim may be the autistic one, but I'm distinctly inflexible when it comes to shifting my Biro collage. "Nah, I don't want to move it," I say, ignoring the very obvious fact that we are here for the lunch hour and we have no punters.

Tim and I go to investigate, whilst Tori mans the empty stall "Just in case," she points out, eyeing the empty room.

There's a mile long queue for lunch and then the destination - a very busy dining room. Nowhere does the coffee lounge feature for the conference traffic. We head back to base, and quickly decide that if this were The Apprentice, we'd have to act bloody quick not to find ourselves facing a very angry Lord Sugar saying 'Well whose stupid idea was it to pitch there?!' (Tori's actually, but she said she based it on good advice).

There's one thing we've learnt during the last four years and it's that shyness gets you nowhere. So Tim and I head down the queue of lunch-goers handing out magazines and leaflets (this is an awareness campaign for professionals so that they can advise parents about us). When we get towards the bit where lunch is served, we decide that it looks a rather nice buffet. Tim and Tori are there for the whole day, I'm merely gate-crashing for the middle bit, so we sit ourselves on an ornate sofa near the lunch queue, decorate a table with our AuKids wares and - after I've perfected the Biro collage - settle down to scoff.

The stand is not exactly a triumph, mainly because the nosh is so good that everyone keeps going back for seconds, they're among friends and colleagues and noone is nearly bored enough to approach us. We agree that the creme brulee is highly recommended, though.

But, the great thing about spreading the word, is that you never quite know where AuKids will land. One shy member of staff approached us asking for some information for her aunt, as her cousin is autistic. So she walked away happy. And if we make a difference to ONE person at any one event, then we're happy.

Especially if the lunch is good.

Monday, 21 May 2012

How Come He's Still Awake?

Alec had a party last night. Just for himself. It started at 2.30am and went on till, well till it was time to get up actually!

The party I'm pretty sure was prompted by him trying a well known brand of brown fizzy drink. I'm no fanatic when it comes to Alec's diet but you can be pretty certain that if he touches the fizzy stuff or too many sweets, he'll be bouncing off the walls by the end of the day.

I am shattered. I will be saying hello to Mr Sandman at about 9pm tonight if I can. Alec, on the other hand, is acting as if he's had a full ten hours kip. How does he do this? What's his secret? Could I have it, please?

Sunday, 20 May 2012


For the last oh so waffly philosophical posting. I was hung over. Still am.

Dance Therapy - Highly Recommended

There's nothing like a good night out on the razzle to blow the cobwebs from a responsible parent. I don't go out drinking very much these days at all - I prefer cinema and dinner since I'm generally an embarrassment on the dancefloor.

However, it was a friend's 45th birthday last night and she had in turn been invited to another friend's 50th. So for once I wasn't the oldest person on the dancefloor. Besides, this was a trendy bar rather than a nightclub. This meant that I could chat plus throw in a bit of a dance at the same time whilst sipping my drink.So whereas you may have called it 'dancing' as I appeared to be bobbing about a bit, technically it wasn't. There are no dance competitions that I know of that involve balancing your moves with a drink in your hand, so the pressure was off. And if none of that makes sense, it's probably because I had one June Bug too many and am still recovering.

Partly because I couldn't hear myself speak, I didn't mention to one person all night what I did for a living or that my twins had autism. Or even, come to think of it, that I had twins. It was enough just chatting about music, making stupid gags and alerting everyone to the police cars that were lining up outside ready to make arrests at the downstairs bar (we were in the upstairs function room so got a good view of proceedings).

Last night was a blast and provided me with a total shift of focus. Shifting your focus is something that author and parent Geraldine Hills told me was central to her 'survival' techniques and I'll be featuring it in an interview that I did with her for Issue 16 of AuKids. They say that a change is as good as a rest and that's never more true than when you've made a change inside your head itself, swapping your every day concerns with a bit of fun and frivolity. That's as good as a total break.

Sometimes it's not respite we need from our kids, but from ourselves. Much as I'm fascinated by autism, much as I want to do the best for the boys, much as I live and breath the condition every day of my life...sometimes I bore even myself with it.

Last night I realised that I am still a person worth getting to know even without the autism banner to wave. A person has merits with or without anyone's rights to champion and it's easy to lose sight of yourself in the fight to become the best parent you can be.

I am just making a note though, that hangovers and kids don't mix.

Friday, 18 May 2012

It's Lucrative Being a Kid

Alec had a great day at school today making choc chip cookies. None of the other kids would try them but him. So selfless of him to volunteer to be the tester like that. That's Alec all over. Always doing things for other people. And his gob.

Meanwhile Bobby ran to me (this is a rare occurence because it involves exerting some effort) after school with the exciting announcement that his tooth, which has wobbled for 3 weeks, is finally out.

Walking back to the car, the debate on whether he should be allowed access to the Internet via DS was waived in favour of a more pressing issue - what the going rate would be from the tooth fairy.

"Dara's tooth fairy gave him ten pounds for his!"

I stifled a 'TEEENNNNN POUNDS?!!!?!' and instead ventured: "Was it a gold tooth?"


"Ah well you see it's a bit of a postcode lottery with tooth fairies. Heald Green fairies aren't very rich, you tend to get a pound round here, whereas Wilmslow fairies give a lot more. He must live in Wilmslow."

Believe it or not, he seemed to accept this. That's two quid already for the ten 'good boy' stars this week (for doing independence stuff like pouring own cereal - and managing to get it inside the bowl). Plus another quid thanks to the tooth.

Immediately he shook his Thomas money box out over the spare bed and decided he was rich enough to download some DS game  involving a miaowing cat.

Life's a breeze when earning is this easy.

Thursday, 17 May 2012

If At First You Don't Succeed....

Alec's ready for his special school's Diamond Jubilee party. He has no idea what a diamond is, or what a jubilee is, but he sure knows how to party so he won't mind the regal crown and cloak costume, I'm sure. As long as there's cake about, Alec's happy.

Meanwhile the chip, chip, chip continues with Bobby. When I collect him from his friend Jamahl's, he notes with great emphasis that Jamahl has access to the internet on his 3DS. Whereas Bobby isn't allowed internet access on his 3DS.

Bobby's mantra is if at first you don't succeed, WEAR THEM DOWN.

Bobby: 'Jamahl's got access to the internet - look!' (shoving Jamahl's 3DS in mum's face whilst she's trying to have a cup of tea with Jamahl's mum).

Mum: 'Yes I can see that. You can't though, sorry.'

Bobby: (totally ignoring) 'If you click on this, then click on this, see, go to access and then tutorial...click on that...I'll need my pin number - then we've got the internet!'

Mum: 'I know that Bobby but you aren't allowed the internet on your DS, you can play on your log in on the computer.'

Bobby: 'See - but Jamahl has the internet. You can download games and videos and much, much more!' (reverting to advert speak in an attempt to be impressive)

Mum: 'Perhaps you'd like a loooooong chat with dad about it.'

Bobby: 'Would you tell dad? Tell dad I can get the internet? I am very careful, I only go to the right sites. I am professional with the internet.'

Mum: 'Dad's already made his feelings quite clear on this one. We can't block sites so you can't for now no. Maybe when you're older.'

One hour later...

Bobby: 'When I'm 9? Maybe when I'm 9? So that's a couple of months?'

Mum: 'When you're bigger'

Bobby: 'Awwww, it's not fair.'

Mum: 'Sometimes you have to trust mum and dad. You know what trust means? You have to have faith that we know what we're talking about and that we do things for your good. We wouldn't want you to be frightened by anything you saw, the internet can be a nasty place.'

Bobby: 'Hmmmm but you've got to trust ME.'

Mum: 'Trust you. Why?'

Bobby: 'Because I am a professional.'

Mum: 'What in?'

Bobby: 'An internet professional.'

Bobby did not get bored of this conversation until Gavin cleverly made it into a joke by putting on a funny voice every time he spoke and saying 'STOP GOING ON ABOUT THE INTERNET!' and tickling him. Bobby found this so amusing that he was entirely distracted from chipping away. Until tomorrow...

Wednesday, 16 May 2012

Social Story P.S.

...and I will not wake my mum up in the morning by 'can you cut them out please?' followed by endless requests for scissors when she's making breakfast, followed by doing it yourself and mucking it up, followed by endless requests for Selotape, followed by doing it yourself and mucking it up, followed by mum grabbing scissors and Selotape and doing the entire thing before 8am.

Followed by mum deciding that it's pointless doing anything but going back to bed this morning and starting all over again.

A Social Story About Being Grateful (and therefore keeping your mum from losing it)

This is written by one hacked off mum (guess who) who was woken at 7am with '...and can you cut them out, please?'


Sometimes people are kind and thoughtful to me. They might look after me, play with me or make something for me.

This is like when it’s mum’s birthday and I make her a card.

When people put a lot of effort into being nice, it means that they care.

It is really nice if I show that I am grateful that they care and I appreciate the things that other people do for me.

This means stopping to think about the effort that another person has made for me. I might ask myself questions like:

‘Did they take a lot of time doing this for me – more than 10 mins?’
‘Was it difficult to do this for me?’

‘Did they go to a lot of effort?’

‘Have they spent a lot of hours in the day with me?’

‘Have they spent their money to buy me something they think I would like?’

If the answer to any of these questions is ‘yes’ it is really polite to show I am glad.

I can do this by saying: “Thanks! I’m really grateful!”

This will make them feel happy that they have made an effort with me, just like I feel happy when mum says how nice it is that I made a card or painting for her. 

And because they got a big smile and thank-you, they will want to help me again!

I will try to show that I’m grateful every time that someone makes an effort for me.

Tuesday, 15 May 2012

Chip, Chip, Chip...

How do they do it, autistic kids? That endless patience when it comes to something that entertains them, or something they want.

Since the Super Mario in print idea came to light this afternoon, it's been a steady chip, chip, chip from Bobby to see if I can print out more super Mario levels for him to play with in paper. Somehow he's aware that there are 32 of these levels, four levels and 8 worlds...I could hear him doing his four times table quietly to himself. There was no escape. You can't just palm these kids off with flippant excuses. They know the score. They know when you're fibbing. My job wasn't complete.

I've just come back from a marketing meeting at Bobby's school (I'm a governor because they've been so good to him). It's 10.20pm and I've just written up the minutes. By rights I should be watching rubbish TV now. What am I doing? Cutting and pasting Mario worlds, the most obscure job in the universe. All so that I can see his happy little face in the morning. Oh, and to stop the chip, chip, chip effect of him mentioning it 40 times in an hour.

So yeh, I know what you're thinking, little pain gets his own way because he's autistic. Yes he does, you're right.  This isn't because I feel guilty that I've somehow failed him if I don't obey his every whim. He doesn't get past strict parenting because he's autistic, no - that's not it.

It's because if you have autism, there are enough tough things to face in life without your mum refusing to do the odd late night cut and paste. And although the things that make him happy sometimes make no sense to me, the happiness is very real indeed.

Plus, this happiness isn't Mario 3D Land and therefore won't set me back 30 quid.

Alec meanwhile is on loud week. He hasn't been loud for some time, but boy is he making up for it. Loud week means that Alec's usual happy little chirps turn into high pitched squeals, the type that could shatter glass. Maybe it was the chocolate? Maybe it's springtime? Maybe he has just been adorable for so long that he's decided we needed a bit of eardrum bashing to wake us up a bit? Earplugs for me tomorrow morning.

Right, back to the Mario job. There wasn't anything good on tely tonight was there?

What's the Difference Between...?

What's the difference between a caring, loving, understanding mum and a total sap? I don't know but I think I'm just beginning to find out.

I am trying to cook dinner, fold washing and print out Super Mario pixellated scenes. Every time I print more, task-master here (Bob) says, 'hmmm I think I need a few more'. When, exasperated, I say that I've got plenty of other stuff to do, he says brightly:

"I know - you can do job, printing, job, printing, job, printing, and so it goes on. Right? That solves it!"

Note to self, being autistic doesn't exclude you from being a demanding little tinker.

Games Come in All Shapes and Sizes

I love Bobby and don't get me wrong, I love his autism too, because it's part of him. Yet in any given situation I'm not entirely sure whether to register him as a genius or a fruitcake. I think that this is because most geniuses are fruitcakes in part, anyway. Also, I'm not sufficient enough a genius myself to recognise it when I see it.

Fruitcakes, on the other hand, I can spot a mile off.

This is what he's just asked me to do. It's a request he's been storing in his head all day, because it was blurted out in the car on the way home with great urgency. I've had to find a Google image of classic Super Mario (it had to be pixellated), shrink it to the right size and then print out a number of 'level maps'. These are the full pixellated images of a Super Mario Nintendo game level. On paper, they don't resemble much. They are long, narrow and extremely small.

I couldn't think what he wanted them for and he wanted hundreds. In the end he settled for the six that I could successfully cut out and paste onto a landscape piece of paper.

Having cut out the tiny Mario character and cut a small hole in the spare bed's blanket in doing so, he proceeds to jump the paper chap over each bit of the level, singing the Mario theme music as he goes. Within about five seconds he is done and announces he needs more levels.

I refuse, because I'm a sad old whatsit who can't be bothered hassling with stuff that Bob tires of in 5 seconds. Then again, this is excellent imagination! Shouldn't I be encouraging this?

Bobby developed imaginative play really late and so this is pretty typical of what he does these days. All of a sudden we have an entire drawer of little cut out characters. They're never made up entirely from imagination, they're either printed or scribbled versions of Mario, Skylanders or whatever advert's taken his fancy. Then he'll develop a faithful re-enactment of what he's seen in a video game or on TV. It may not be an entirely original form of play, but it's a big leap forward from what we had before. This is a kind of in-between world of imagination.

His school assistant and I were bemused at all the cutting out requests at first. It was starting to get in the way of school work. Then we thought - hold on - this is a piece of development that Bobby missed out on. As he grows, he is starting to fill in some important gaps. And maybe - although it's a bit bizarre - this is is a gap that we need to let him fill. He didn't do the drawing and cutting out that most toddlers do. At the time he was flapping, humming and spinning stuff. This is suddenly all the rage, now that he's eight.

It's really easy to pass off Bobby's little paper games as insignificant or quite frankly a pain in the backside if you're trying to get some work done on the computer. Yet they are as important to him as 'normal' games like dressing up and make believe are to other kids. I try to be in Bobby's world as much as possible - it's a great place most of the time. So yep, he should have his little scenes if he wants, even if I can't quite see the point.

They represent a stepping stone in a path that's often unclear to me, but - just as in the rest of life - I can't rule out their significance just because I'm too daft to understand the bigger picture. Looking back at this pathway that Bobby's walked, he has done a pretty good job of self-development so far. With a little support (that means me joining in paper games etc.) I reckon he'll have it all sussed.

So, who am I to argue?

Thursday, 10 May 2012

Ancient Egypt Lesson

Bobby's latest classic. 'I learnt about Egypt today and saw a video on Tuttlehum. It had lots of treasures in the tomb!' Turns out to be Tutenkhamun. Good thing I speak Bobby. Guffaws all round. He looked like he'd made a faux pas at a cocktail party and said 'Oh I'm sorry, I couldn't remember his name.' Not likely he'll be bumping into him any time soon.