Monday, 29 July 2013

You can't guarantee it? Then don't darn well promise it!!

WHEN Bobby emptied out his Thomas the Tank Engine money box, there was a surprise. He was just £1 short to pay for the New Mario and Luigi Dream Team 3DS game. 

This windfall had occured because Bobby doesn’t really care about money unless there’s a new DS game he really wants to buy. Having resisted an upgade on one of his fave apps, he had done it. 

I gave him his pocket money a day in advance and we popped straight on Amazon to order the new game.

“When will it come?” said Bobby with that hopeful face that made him look about four years old and completely irresistable.

“Coupla days,” I said, trying to shield from view all the alternative game suggestions that the website was helpfully popping up in front of my gaming addict’s eyes.

Bobby made a disappointed face. “Awwwwwwww.”

Oh come on, I thought to myself. He’s saved all this cash for a game, the least you can do is pay extra for him to have it tomorrow. Then I spotted that I could have a free trial for a month of Amazon Prime, so I opted for that, and next day delivery. 

The computer confirmed that the Mario game would arrive on Saturday.

Except that the game didn’t arrive on Saturday. The postman arrived with another parcel and said that it wasn’t on the van. I couldn’t understand it. My guaranteed delivery had flunked, big time, and I’d just told my autistic son that it would definitely arrive today. Bit stupid. Cast iron guarantees are never wise when it comes to dealing with an autistic person. Always build in the 'maybe'.

He took it rather well, all things considered. Course, he expected me to be the font of all knowledge when it came to Royal Mail and I could only shrug and tell him I didn't know why it had failed him.

The package didn’t arrive on Sunday either. On Monday morning, I was sure it was just a simple weekend delivery mistake and assured him that it would arrive when the post came. As the postman pulled up in his van and I jumped to meet him, he handed over a Jiffy bag that wasn't a DS game.

There was nothing for it, I’d have to complain. When complaining, I always start pleasant. No harm in it, you can save being arsey for when they’re unhelpful. 

This chap was the most helpful chap I think I’ve ever spoken to. He was close to devastated when I told him that I’d promised my autistic son something on Saturday and autistic kids don't really get the notion of ‘delayed’.

He’d call me later, he explained, and if it hadn’t arrived by 4pm today, he’d send us another one double super extra expensive express.  He also extended my Prime trial, since it hadn’t worked. He was obviously used to being shouted at a lot, because he thanked me for being so understanding. 

So I replied: “Well, since you’re being so understanding as well, do you mind having a quick word with my son to tell him what the plan is?”

I passed the phone to Bobby. “Hello,” said Bobby. “I have saved all my money for my Mario game. Where is it?” He stood quietly as the guy explained what he was going to do about the problem. 

He gave no indication that he’d heard what was being said, so I whispered “Is that ok Bobby?” 

Bobby nodded (helpful). Then he said: “Yes. Thank you.” He never signs off, he just hands the phone back to me.

I thanked my helpful customer service guy.  I felt that by this stage if the game didn’t arrive, he’d drive it here himself and it sounded like he was based in northern Ireland. 

Having spoken to Amazon personally, Bobby was happy with his reassurances. I think a couple of years ago this may have taken a lot longer for him to get over. But he has learnt, bless him, that life is full of small disappointments. Most of them can be resolved with a little patience.

Friday, 26 July 2013

We're All Going on a - Summer Holiday....

No more worries for a week or two?

You must be bloody joking.

When the twins were younger, I used to look upon the summer holidays with a sort of dread. It seemed as if a black hole of time suddenly approached and swallowed me up. It felt as if I’d never reach the other side of it. 

When the school holidays eventually finished, it took me weeks to recover, by which time the stupid half-term had come along.

Time to fill can be a daunting prospect if your kids don’t have the adequate play skills to amuse themselves. It was a huge challenge and some days I didn’t always feel up to it, particularly as it was too risky to take Bobby and Alec out on my own.

Over the years, I got a lot better at coping with this. 

Point one is to remember that it’s not only autistic kids who can be a bit rubbish at amusing themselves, although we may feel more affected. In fact, when Bobby or Alec are playing on an iPad, they can amuse themselves very well. It’s the imaginative play they lack. But don’t kid yourself that every other kid is building masterpieces at home with Lego. Since they’ve been to school, I’ve learnt that most of them are watching TV and driving their parents nuts, too. 

The first real lesson I learnt was not to metaphorically block my ears with my fingers muttering to myself ‘it’s not happening, it’s not happening!’ as June approached. I started to plan. Spontaneity, my friends, is a luxury that only those without kids with autism can enjoy. In particular, when attractions are so busy during the summer, spontaneity is largely valueless. If you know what’s happening first, you can book, prepare them, and life gets a lot easier.

Making holiday plans too early was my second mistake. Once I realised that the holidays were a bit of a nightmare, I went into overdrive and started planning in May. By the time all the lovely offers of disability-friendly play schemes had filtered through to me, I had already blocked in time with something else.

So these days I find a happy medium and I start planning late June/early July. Like a total nerd, I start making a timetable – yep that’s right an actual timetable – colour coded as well this year. This allows me to see how many blank days I have (and whether they’re a healthy amount for mental sanity) and it’s also something to show Bobby. His un-timetabled time can be quite stressful, so this makes him feel a lot more secure. 

For Alec, who is more flexible and doesn’t understand timetables, I show him photographs of where we’re going on the day before. He understands ‘tomorrow’ and it’s as simple as that.

Everyone’s different but I learnt over the years that the boys didn’t always enjoy days and days away from home. I also learnt that this wasn’t actually what I or they needed (although it may be different for you, I appreciate, especially if the quality of care they’re getting is good and you work during the day). 

For me, I simply needed adult company about twice a week to enable me to take them somewhere different and exciting and also to have some grown up conversation.

By the time they were 8, I’d learnt that a Tuesday and a Thursday afternoon with another adult was all I needed to keep me sane. Days out have been replaced by afternoons out. Getting twins ready for a day out by 10am (with all the extra clothing, sensory toys, instructions and lunch) was no picnic, if you’ll excuse the pun. I’d done a day’s work before they’d left the building. 

The afternoons being the longest time to kill at home, I now let them take it easy and watch telly or play computer in the morning. If we’re going out, it’s either for or after lunch.

First to get slotted into the timetable is the twice a week ‘sanity’ sessions with help – either support for me taking them out, or someone else doing it. I time it right - an inside attraction on a hot day to guarantee that it'll be largely deserted.

I dot a few trips to my mum’s in between. Then later, nearer the time, I fill in with places I can take the twins to on my own. These include some marvellous disability clubs which are safe and where everyone looks out for each other. More recently I’ve been able to take them to ASD Friendly screenings on my own, too, despite having to squeeze all three of us into a cubicle when someone gets caught short.

I also work better at planning my husband’s time. The minute that Jools Holland has counted down to the New Year, the diary comes out. His work is first come, first served for holiday bookings. So naturally by one minute past midnight I’ve sorted the dates.

There’s one final thing that I learnt and that’s the value of doing nothing. Autistic kids, whether they’re at mainstream or special school, need alone time and they need time to do naff all. This doesn’t mean endless computer and TV, but I did have to learn to relax about this one. 

It’s lovely for them to visit places and to have fun but how would you feel if every day of your holiday was booked up? You’d be exhausted! I realise now that I did it because I felt guilty that I couldn’t play with them very productively at home. 

Since then I’ve learnt how to watch them have their own fun, keep them company without interfering, and basically roll around the floor doing tickles. I spend my time building train sets and marble runs, mostly. I don’t beat myself up that we’re not making pretty pictures or baking cakes. If I’m tired, I forget the Play Doh. I give them my time and however boring and valueless that may feel when you’re watching trains going round a track, it really is important.

Finally, I promise myself three days of DOING NOTHING when September comes. It rarely happens, but the fact that I've promised it to myself makes me feel a whole lot better on a day when I feel shall we say 'challenged'.

Good luck and happy holidays!

Tuesday, 9 July 2013

Practising Skills in the Virtual World

Having taught our autistic son Bobby to learn to speak at the age of 4, it seems a little churlish of us to be fine tuning his social skills at the age of 9. Are we never grateful? But that's what I've been doing.

Actually, we didn't teach him to speak. He did that all by himself with a little motivation from Makaton and packs of raisins. Noone can teach to speak if you don't actually want to in the first place.

To Bobby, talking to me about social skills seems about as much fun as double maths was to me when I was in secondary school. I can almost see the cogs whirring in his brain.

For me, this is a bit like being given a giant Lego building, taking it down and then showing him how to rebuild it brick by brick. I have to take apart all the social stuff I take for granted, examine it with a magnifying glass, translate it into 'Bobby speak' and relay it to him. Whilst this can be a little wearing, it's tremendously rewarding. Bearing in mind that now he's 9 we have a limited window of opportunity before his knuckles start scraping the ground and he starts going 'WHA'?' and slamming doors, I'm keen to help him.

Our little lesson came about as a result of that mixed blessing, the computer. Here in the virtual world, Bobby can practise his social skills with rubbish conversations and random nonsense and it doesn't matter. He can simply walk away from his 'Robloxian' mate and their paths need never cross again. This is a bit like speed-dating without the romance. Although it's a great opportunity in terms of learning, it's also fraught with obstacles. I'm helping Bobby to overcome these in a safe way.

So, I'm watching from the spare bed as he types away in the zealous manner of a medical secretary. He is having a conversation with someone who has a code for his name and is wearing quite cool clothes considering he's made from virtual blocks. They are playing bowling together, but the other virtual dude seems not very friendly. He is talking with some hashes (no doubt blocked out swear words) and has already called Bob a 'Noob' which is a Robloxian insult.

Bobby on the other hand is being friendly as hell. 'Can we play again after this?' 'Can I be your friend?' 'Can you friend me?' 'Don't swear!' 'Sorry!' etc. He is coming across as alternately needy and bossy. I decide after not too long that I don't really like him hanging out with this building block thug. There's no point in telling him 'no' though, if I don't equip him with the ability to reach his own conclusions.

I try to find the most visual way of describing a friendship. Inspired, I take the kitchen weighing scales and some apples out into the garden. I explain friendship as a sort of scales, with someone putting in a little bit about themselves on one side and then the other person following suit. I describe a 'balanced' friendship as one where we both put in the same amount. Then we think about what happens if all the apples are on one side and nothing on another - we walk away.

We also only put little weights on to start with - and always only little weights when it comes to people we don't really know on internet games. Little bits of chat about the game, nothing else.

We save how to tell if someone is taking the mickey out of you for the next lesson. A bit at a time will be easier to digest. Besides, I need to work out how to deconstruct that particular building first.

Bobby seems really interested - I think he gets it. This won't be the first time I need to share the idea, and he actually asks me to write Social Stories these days. But it's beginning a thought process - the thought that we have to watch carefully what we invest in and that we have to defend ourselves from people who aren't worth our time.

Suddenly he seems exhausted. 'Can we stop talking about this now?' I reckon that's how I used to feel at the end of double maths. This stuff really isn't that easy and good on him for being prepared to chat about it.

Bobby is growing up in a world where people will seek to take advantage of him. He will need to make judgements on people's behaviour. Sometimes if someone is giving a sarcastic look on TV, I ask Bobby what he thinks they're thinking. He pretty much gets it right. Practise makes perfect though.

All this is probably preferable to what I really feel like doing, which is getting on the computer to trendy Robloxian and saying 'Oi! Does your mother know that you swear online? How old are you? Go and bother some other kid!!'

I won't be able to do that in a bar when he's 21, so I may as well refrain now (though it's tempting).

Monday, 1 July 2013

The Magic of Imagination

The thing about Bobby's literacy homework is that it always calls for some imagination.

Bobby has developed a good imagination over the last five years (he honestly didn't start this way) it's just that it's not quite the sort of imagination that makes for perfect literacy homework. Stories are on his own terms, using his own computer characters. His teachers know this and don't mind, as long as he makes an effort. Whether he makes an effort or not with English is dubious to be honest, but if he lifts a pencil and writes something on the weekend I'm generally happy.

His latest homework was How to Turn your Teacher into a Toad.

For homework, it says, write a set of instructions. Remember to include what you need, bullet points, lists, imperitive verbs and time connectives, heading and sub-heading.

A lot to remember, especially for someone who only has room for the Roblox game in his brain at the moment and is firmly not into frogs or witches. In fact the whole idea of turning Mr Cunha into a frog upset him quite a bit. "I like my teacher," he said tearfully.

Of course, it goes with the autism territory to take things a bit literally.

Take Bobby's swimming safety lesson on Friday, when the teacher demonstrated what to do when you're drowning, by splashing around and yelling 'HELP HELP!' in front of the class. Bobby panicked. "HELP HELP HELP HELP!" he shouted, fearing that the swimming instructor had suddenly lost the plot in very shallow water. After a brief calming session he was fine.

"I don't want to turn Mr Cunha into a frog!" he moaned, rather tearfully.

I am used to this. "Ok so what can we turn into a frog then?"

"A Robloxian!"

Yup, cos everyone knows what a Robloxian is. But fine, because we are finally sitting down doing literacy homework so we will not question this at all. If he wants to turn a Robloxian into a frog, that's what we'll do.

Bobby got to work.

How to Turn a Robloxian into a Toad

What you Need

  • Toad potion
  • Magic wand
  • Toad morph
  • Gun
Ignoring the rather violent bit on the end of the list, I ask him where I get toad potion from, but apparently we don't want to bother with all that detailed nonsense.

Bob continues:

1. Let the Robloxian drink the poison, tell him/her it's witches brew (put it in the witches brew can). Tee hee.

(This is bringing out a side of my son that I'm not sure I'm altogether happy with...If I were a Robloxian, I'm not sure I'd touch witches' brew anyway).

2. Wave the magic wand and say 'Die Robloxian!'

(Again, reassessing the suitability of this game on a daily basis)

3. Morph the Robloxian with the toad morph

(It's that simple)

4. You are done! But to turn him/her back to normal, shoot him with a gun - oof!

Gavin read the homework. 'Do you think they'll report us to Social Services?' he asked.