Sunday, 29 April 2012

Sunday Morning Showers

Well, it's Sunday and after a day spent gossiping and shopping with my visiting friend, I feel fully recharged for the twins.

Bobby is playing MarioKart Wii and explaining the rules to me. You can learn a lot from kids. "What's the difference between manual and automatic?" I ask him, thinking of a gear stick or something. "You don't get turbo with automatic," he says, eyes firmly on Luigi, who is racing some Japanese opponent to the finish. "Oh," I say. Then I wonder if he knows what he's talking about, or whether he's just repeating something he's heard. With Bobby, he's so good at learning and repeating that you sometimes have to test his knowledge. Also, I'm darned if I know how MarioKart Wii works.

"What's turbo...? I offer, aware that with his eyes glued to a nasty looking jump Bobby may well be tuned out by now. He gets through the difficult bit then replies: "It's extra charge, extra fast," he tells me patiently. Oh right, so he does know what he's on about.

Alec looks on from his beanbag. He enjoys the spectacle of the MarioKart game even though he's not brilliant at joining in. We sometimes give him the control and help him through it, but between Alec and I we usually end up going in the wrong direction.

Alec's already been busy this morning, playing a loud Chinese bubble blaster that I bought him yesterday and looks precariously close to breaking already due to a questionable design. He has ditched his Vtech kids' keyboard in favour of the rather more expensive adult one in the dining room. Earlier he was eating grapes and wearing Gavin's Sannheisers (is this the best idea?) whilst picking out the grooviest sounds on a keyboard that makes your average cockpit look a piece of cake. Despite hefty learning difficulties, Al shows no fear in navigating himself round a piece of musical equipment and since there's plenty that he can't do, we indulge him heavily in anything he's interested in.

Alec's idea of groovy, however, usually gives me a migraine so I'm pretty glad of the headphones. He likes the rockiest, the loudest, the fastest rhythms possible. Input, input, input with Alec, who's a sensory seeker. With his Vtech, there's also optional buttons for slick interruptions, so we can occasionally hear: 'Oh yeh!' 'Check it out, check it out...' Al, clutching one headphone to his ear and putting a rare amount of focus into his remix, looks like he'd be at home in Ibiza.

Gavin has been trying to watch the Andrew Marr show in the bedroom but there's frequent interruptions. Bob came in to tell him that CBBC was making an 'Oooo-eee-ooo---ee-uuuueeee' noise and could he fix the telly? Alec came in to admire himself in the long mirror and collect a plastic frog that he'd left there earlier. Gav eventually gets to rant at the screen in peace, which is his idea of a relaxing Sunday.

And me - I think I'll have a go at Mario in a minute. Minus the turbo.

Friday, 27 April 2012

We Don't Need No Education...

This morning, yet again, Bobby expresses surprise that he's being asked to go to school. He's been going for three years now, but the idea still appalls him even though he enjoys it once he's there. Not the work, I hasten to add, the work sucks but he likes the social aspect of it. He's supposed to be autistic for crying out loud...

When Bobby is miffed about something, he tends to exaggerate. "Do I have to go to school EVERY DAY?" he moans, and then without waiting for an answer "I have to go to school on SUNDAY as well!" He likes doing this, filling in his own punishments so I don't have to bother. Another favourite, which he gets from Horrid Henry, is suggesting NO TV FOR A WEEK, which isn't a bad idea.

I try to explain to him that he needs to go to school to learn lots of things about the world so that when he grows up he can follow his master plan of opening up a selection of computer stores called Bobby's Screens. I suggest that he'll need to know how to do maths and how to write things down to do that.

"But I know maths already!" he interjects. "And I know literacy!"

Darn this is true. He can read and write and he's just a bit hotter at maths than I am. It's not that school isn't challenging enough, because his school know exactly where he's up to and he falls behind on a variety of subjects, categorised by 'stuff I can't be arsed with'. These include sport, unless it's indoors.

I write to his learning support assistant M'lanie in the communication book. Do you think it would be a good idea to ask Mr Cunningham (headteacher) to explain to Bobby why school is important - and I'll write a Social Story?

Mr Cunningham is great with kids and has formed a special bond with Bobby by comparing their sock colour in the morning. If anyone can explain why school is important without alienating someone, it's Mr C.

We all know the real reason why it's important for Bobby to go to school, though.

It's so that he doesn't spend 365 days a year, 12 hours a day playing his Nintendo 3DS.

But do you know, the social side comes a close second...

Thursday, 26 April 2012

Who Says Autistic Kids Have No Imagination?

So, I'm just about to arrange a little vase of freesias in our spare room/study ahead of my friend's visit tomorrow, when I realise that the windowsill has been set up by Bobby, who is quietly filming it with his Nintendo 3DS.

For a moment, I have no idea what's going on, but that's not unusual.

Having located the Telly Ads website yesterday, Bobby has been laughing his head off at the Guzzle Puzzle advert. Guzzle Puzzles are fruit gums that slot together to form different flavour combinations. It's actually the sort of thing they'd dream up during The Apprentice and that Sir Alan would say was a load of crap.

Anyway, the advert he likes is when two Guzzle Puzzles call the Guzzle Puzzle helpline to get some help about how to form the Cola flavour.

As I type this, I'm being interrupted by Bobby who has a packet of real Guzzle Puzzles and is showing me how to form Cola flavour...

Anyway, Bobby, like a lot of autistic kids, is a big fan of adverts (see forthcoming issue of AuKids for the full run-down on this...) Adverts are not boring like one and a half hour films (which are interrupted at five minute intervals with 'how many minutes to go?') Adverts are often funny and clever and can easily be remembered off by heart.

This Guzzle Puzzle advert is particularly rib-tickling, according to Bobby. So much so that he's re-enacting it on the windowsill with three Guzzle Puzzles and our telephone. He's filming the entire scenario and he has the Telly Ads sound going in the background to make the soundtrack. He's done this before with the PG Tips advert and the advert for the National Accident Helpline, so you can see that his interests aren't restricted to food.

In fact, he won't even eat these Guzzle Puzzles, that'll be down to me and Alec (ahem). Alec got through his own packet in five seconds flat. I did show him how to make different flavour combinations but he pointed out - wordlessly but clearly - that the best flavour combination of all was when you shove the entire packet in your mouth at once and then chew.

Anyway, back to getting ready for that visit...I can hear Bobby in his bedroom at the mo. He's saying 'Banana and Banana make Even More Banana flavour.'

Gym and Tonic

Nearly every morning I try to go to the gym. That line alone makes me almost faint with astonishment, because until March this year I was about as likely to go to the gym daily as I was to appear on the Jeremy Kyle show.

It all started when a personal trainer called John Preston, who also happens to be a carer (one of his kids has Rhett's Syndrome) advertised for a carer to step forward as a sort of guinea pig. He wanted to show the impact that a month's worth of intensive exercise and good diet could have on a carer, both mentally and physically. He was willing to offer the training for free in return for a daily blog on the experience and some deeply embarrassing before and after pictures (which I'm not posting here under any circumstances).

My initial reaction to reading the advertisement was probably much the same as anyone's would be. The word 'intensive' when paired with 'exercise' is distinctly daunting and my eyes skimmed that sentence quite a few times, with a loud voice in my head shouting 'Nooooo. That's a stupid idea. You and intensive exercise? Pass the Kit Kat and move on...'

But in my brain's boardroom, a small voice piped up. 'It might be good for me!'

The rest of the boardroom laughed at the little voice, which was shrinking back. 'When are you going to get time for this then?' the chief executive snorted. 'You'll get bored within a week and wish you'd never done it!' said some middle manager whose chief job is to procrastinate - he's in charge of the filing that seldom gets done in my study. The little voice, a newcomer I think, said: 'But you can write a blog!'

It's taken me many years to learn that I shouldn't ignore a good gut feeling about something and that little voice seemed to come from the gut. Whilst the other boardroom members were still shouting about it, I emailed back saying that I'd love to be chosen as the guinea pig.

Well, I puffed and huffed my way through the following month, making a nuisance of myself in local parks, using punch mitts to take out whatever tiny frustration had bothered me that day on John. I wheezed up hills, I tricep dipped to the point of collapse and I visited the serious weights bit of the gym, the bit that no mere mortal dares to visit unless they've got a six-pack. The presence of John gave me confidence and with a lot of effort and even more swearing I started to tone up big-time.

But here's the interesting bit (well I think so, anyway). I could afford an hour out of my day much more than I thought I could, and the impact on my energy and patience levels was reeeeeeeally positive. I wasn't naturally a hugely patient person before I had Bobby and Alec. What they've done is to teach me an enormous amount of quiet patience, and it's one of the many things I have to thank them for. There's absolutely no point in losing your rag with Bobby, because you just escalate a situation until his feelings are too hot for him to handle.

However, if you're not naturally that patient and you've had to adapt, then I think that sort of patience really takes it out of you. What the gym's done is to absorb all that tension and energy, making me much more relaxed the rest of the time.

It started off as 'Oh well I'll see this month through, hope for some quick results and then kiss goodbye to the intense bit!'

Now - and I still can't believe this - I'm actually a gym member. No really, I'm there looking like I actually know what I'm doing. Whatever the physical benefits turn out to be, it's nice to have time to yourself and the hard work really kicks any worries to the far flung corners of your mind. Guilt over chocolate or putting on weight was something I really didn't need in my life either.

Of course I also hope that it means I'll be in better shape for Alec and Bobby as they grow. Alec in particular is going to need me around a lot more than your average kid. I'm hoping that he'll have some semi-independence but he's a really tall lad even at eight who needs a lot of care. I don't want to be flaking out at 50. So there you go, I'm one of those boring keep fit converts.

There's one or two drawbacks to my gym, though. One of them is that they don't have many music CDs in working order. The one that they have drills a hole in my head and is designed to be listened to by 18 year-olds wearing not much in nightclubs. That was me in 1988. Looking around the gym, none of us were under 30, that was why we were here for God's sake. When I was under 30, I was a natural twig, stuffing away Mars bars without a morsel of foreboding.

So I approached the guy who had just told me that my exercise bike TV wasn't working because the aerial was knackered, (btw, ever thought of doing something about that, gym management?) and I pointed out that whilst I'm not requesting Frank Sinatra, a bit of high energy stuff from former musical eras wouldn't go amiss. He agreed wholeheartedly, pointing to a sign behind him that said 'From 9am-11am, everything from oldies to modern day'

'Well this isn't exactly an oldie is it?' I pointed out, referring to the manic screeching that had been going on for the last hour and was probably about as appetising to listen to as a workman's drill. Since there was a lamentable amount of alternatives, I suggested I brought in something else and he agreed.

I came in this morning with Now That's What I Call Dance 2001. This was the most high energy CD in my collection and one that I could easily part with. It wasn't my usual taste but I figured anything would be better than the current one. One of the gym guys, who looked like he'd been out of school about a week, thanked me and said he'd put it on immediately.

'Wow - retro!' he said.

Retro? RETRO??

Jeez I am in trouble. I thought retro was Seventies Disco.

Wednesday, 25 April 2012

Brief update at 17.11

No sign of  'special good boy' for Bobby today after he Googled Telly Ads on the laptop (supposed to be doing school work) and was 'bossy' (that's learning support assistant speak for total brat) during computer time.

Walking back to the car, Bobby announces that 'the bad news is, I'm going to have to use your login, because Telly Ads is not on my desktop and I need to Google it.'

Look, PC genius - have you ever heard of the phrase 'Skating on thin ice'?

Actually he has. I had to explain it to him the other day. Far from finding phrases and idioms disconcerting, as many autistic people do, Bobby loves them. This is thanks to Challenge TV's endless repetitions of Catchphrase. Most of Challenge TV's presenters are now dead or met with unfortunate career-limiting experiences. This is of course all part of the fun for Bobby, hearing me say 'Oh - wow - he's not even alive anymore!'

The World According to Bobby & Alec

So here I am, 21st century and all that, kicking and screaming as it happens. I've been writing 'Blog in a Blue Moon' on our website, for a couple of years now. People were too polite to tell me that technically it wasn't a blog, it was a column. It didn't track day to day murmerings, it tracked highlights. The highlights in my case mostly focus on daily life with our eight year old twins, Bobby and Alec, who have autism. Daily mutterings tended to be confined to my personal Facebook updates.

Bobby, who can speak (Alec can't - yet - watch this space, it's all happening), comes up with at least one hilarious one-liner a day, so the Facebook update is easy. This blog will give me a chance to combine the two - larger highlights plus Facebook one-liners, as well as tell you a bit about my little dudes' context. The World According to Bobby and Alec is a confusing but entertaining place, so I'll be sharing as much of that with you as you want to hear.

The twins, being by far the best things that have ever happened to me, have steered my life in quite a different direction from the distinctly uninspiring cul de sac where it was headed.

I once had a rather bland and 'normal' existence as a local newspaper sub-editor, at the Gazette and Herald in Wiltshire. When I was pregnant with the twins, the news crew, who were a fab bunch, nick-named them 'Gaz' and 'Herrie'. Quite fortunately we didn't continue with those names, although we did whip up a few rubbish ideas before we settled on Robert and Alec.

So anyway, after the normal existence came diagnosis and a second life. I'm now the co-editor of AuKids magazine, a positive parenting magazine for parents of kids with autism. My colleague/partner-in-crime is Tori Houghton. In my opinion, she is the best speech and language therapist in the known universe. Having met her in a professional capacity, we kept comparing notes and decided that there needed to be more upbeat, vibrant, practical info on autism - especially for parents of young kids. So we launched AuKids magazine in 2008. We only did it as a kind of hobby, and then it sort of erupted into a nationwide initiative.

Only this week, AuKids has moved into its first office, which is in Cheadle, Cheshire. AuKids is not for profit and can't really afford offices, but Tori also runs Time Support Services Ltd, a specialist autism support and babysitting service. Time moved into offices and AuKids moved with them. We work with a graphic designer called Jo Perry, of Periscope Studios, who has this amazing knack of reading people's minds and putting their thoughts into pictures. And we have Tim, an adult with autism who helps us with all sorts of jobs, including distribution and research. We're a small team but we like to think we make a difference.

After all that preamble, I'm going to have to go, as The Bobster will want picking up from school. Bobby is being bribed to do his work this week. That's because being autistic, he doesn't really feel the need to pretend he enjoys any work that he doesn't want to do. So he gets well involved with the fun stuff, and sometimes decides to ditch the rest.

His endlessly patient learning support assistant has a number of Aces up her sleeve, including building maths problems around his interest in the Skylanders game. Still, school is very much on Bobby's agenda. Thankfully he likes learning, but the week after half-term is always a bit tricky.

So I've unashamedly bribed him this week. He gets a Skylander Adventure Pack if he has 4 x special good boys. 'Special good boy' is Bobby's own term for being very well behaved. He is currently on 1 special good boy and it's Wednesday already so I don't hold out much hope.

See you soon (or any other appropriate wayof signing off these blog thingies....)