Tuesday, 19 November 2013

Life Is A Game Show

TOWARDS the end of the day when I’m cooking for the family, my guilty pleasure is game shows. I start off with a little bit of Deal or No Deal and I finish with Pointless, by the end of which the rice is  usually cooked. That’s not a metaphor by the way, my rice is genuinely cooked by then.

What I particularly like about watching these two game shows is their utter contrast. Whilst Deal or No Deal is largely luck (the only real decision here is how quick you bail out), Pointless requires some genuine knowledge. Whereas there’s life-changing money to be had in Deal, the jackpot in Pointless is only generally large enough to buy a decent holiday. What Noel Edmonds describes as 'Smile money' in Deal is the sort of cash that's worthy of a gallop round the Pointless studio.

Tim, AuKids' distributor, plays Pointless with me by text as we're watching the show, as he usually wins the jackpot from his sofa. If ever there was a game for the autistic mind, this is it, comprising  lots of tiny detail that seems irrelevant and suddenly becomes vital.

Tim’s brain is full of such information and his advantage is that his memory is so good that he can readily recall it.

Since I’m the sort of person who tends to respond to a Pointless question with ‘Arrrgh, I know it I know it, it’s on the tip of my tongue, what was his name again….?!’ I would be better suited to Deal. Also if I ladled it on thick enough, they would find my back story tragic and endearing and I could win lots of money for AuKids. There’s the slight problem of getting a babysitter for two weeks but maybe Bobby could come with me. He’d have to arrange the boxes in order, though.

Anyway, that’s not the point here.

What has really struck me when watching these shows is the contestants’ reaction to winning money.  I watched Deal or No Deal recently and there was a guy virtually weeping because he’d won £16,000. Yep, you read that correctly. He was holding back floods of tears because he could have won £250,000. He dealt too soon.

By contrast, £16,000 is a massive jackpot for Pointless. The upshot is, the Pointless contestants work harder for the same money. Yet they leave the show delighted, not in floods of tears.

This has many parallels with being the parent of an autistic child.

How is it that some parents can have a child who's talented and unique, quirky and bright, and still feel more anxious, disappointed and despairing than another parent whose low functioning child causes them endless joy?

If you’re focusing on what you could have had – and here the £250,000 equates to a child who does everything they’re supposed to (I’ve yet to meet them), you could be failing to see that your own child equates to someone else’s idea of the jackpot.

In stark contrast, the people in Pointless are happy because the jackpot of, say £16,000, was all that was ever on offer. Because their expectations are so different, the reaction on receiving that money is also massively different.

Expectation, perspective in autism is everything. You have the power to make yourself happy or unhappy at any given moment simply from the perspective you take.

In Bobby’s case, I am still constantly amazed every single day at the progress that he has made with social skills and language. In Alec’s case I am also totally amazed that he is beginning to learn so many independence skills. My expectations of them both are very different, even though they’re the same age, but it’s when they exceed those expectations and make their very individual progress that I’m delighted - and nothing else matters.

So if £16,000 is enough to cause you joy, don't mourn for the £250,000 you could have won - it's not real money, but a figment of your imagination.

Thursday, 14 November 2013

Finding The Will is the Way

So, it's a while since we talked about wills and trusts.

Yep, I know. <YAWN>

I have to pass on the benefit of my experience here, having finally completed our Wills complete with trust scheme to sort the boys out should we pop our clogs before they reach 18.

Let me tell you, on the one hand it's a depressing old job, planning for something you pray won't ever happen. On the other hand, our solicitor was right when she said that once it's done there's a tremendous sense of relief.

Some people like to live their lives based on the laws of probability and okay it's not that probable that Gav and I will both get run over by a bus on the same day. Having said that, having lived through the accident that nearly took Alec's life when he was nearly two, I'm in a  good position to point out that anything can happen at any moment.

I also know from previous experience that people's brains go to mush when tragedy strikes. So if either, or both of us dies, unless there's an actual plan those who are left will be stressed out, running around like headless chickens trying to decide what goes where and how to provide for the twins.

So here's the thing, now we've finally done it, noone is in any doubt. We've made clear who will look after the twins. We've also left them a letter of wishes (horrible but necessary to write) explaining how we see the twins' developing - which sort of schools we prefer, what sort of interventions we prefer and a list of people who know them well, who we trust, who could help. We'll also provide the guardians with that letter so that they can ask questions now rather than having to think about them if we suddenly start playing harps.

It's taken us about six months to complete our wills. Before you gasp, out of that six months, one afternoon was spent in an outline meeting and one evening was spent going through the draft wills and writing our letter of wishes. A further half hour was spent on a separate letter of wishes for specific items we wished to hand down to certain people. Out of the total six months, then, it took less than a day to complete the wills and trust.

The rest of the time was spent dragging our heels.

I'm usually a very organised person, but the thought of going through the draft will (very official and all that) put me off. Also, it required Gavin and I to spend some time going through it after the twins were asleep on an evening when he wasn't in a heap from a busy day at work. The fact that we both had to spend time on this together slowed it down somewhat.

When we actually got round to it, it was so straightforward it was unbelievable. The solicitors (in our case Gorvins in Stockport) draw up all the hard legal bit, all you have to do is make some decisions regarding your children's future and then sign on the dotted line.

Nothing is perfect and let's hope we're still around when the twins are in their seventies. But given worst case scenario, at least I know that both personally and financially, they'll be catered for according to our wishes. 

And thank you to Gorvins for making this as pain free as possible. Really, it's not all that bad. Don't forget to look in Issue 19 if you need a reminder of who to contact to do yours. If you're a subscriber, use your username and password to look up Issue 19 in our Magazine Archive online.