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.
Tuesday, 19 November 2013
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.
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.
Monday, 7 October 2013
Bobby and His Best Bud
Jahmahl and Bobby today, with a couple of unlikely looking buddies and below, in 2010 when they were in Year 2 together
The assumption that all kids with autism are forced into a lonely and isolated existence is the sort of assumption made by those who don’t really know much about autism in the real world.
Whether a child will be lonely or not depends on many factors. It depends on whether they are surrounded by adults who understand them and help them to love themselves as they are. It depends on what they’re like as people. It depends whether they enjoy being on their own. It depends whether they have the social skills to connect with others or whether these need to be learnt. It also depends on who they’re surrounded by. The point is, autism doesn’t come in a parcel labelled ‘isolate from others’.
Since having my twins, both of whom have autism, I’ve learnt that there is more understanding and compassion in the world than I could possibly have imagined, and most of it comes from other young children. They don’t see limitations or labels, they simply enjoy another’s company or they don’t. They don’t weigh up possible friends with a tick-list to evaluate potential. The younger they are, the less judgemental, I've found.
I used to hate it when other parents said: ‘I’m glad your son’s in my child’s class, it’ll teach them that people are different.’ I used to feel all spikey and clammy when they said that.
‘So my son’s just a learning tool for your bright and talented charming little kid, is he? Is that what he’s there for? Not a friend on his own merit, but an educational aid?’ That’s what I used to think.
Now that I’m very much more relaxed about my children, that sort of thing still makes me cringe a little, but actually it is very well meant. The other parent is pleased that their child is learning tolerance, and who wouldn’t be? Better that than the snobby parents who want their kids to steer clear in case the autistic child holds them back in some way. I haven’t had that, but I’m sure it’s common enough.
So back to making friends, then. If you look at it dispassionately, Alec doesn’t really have friends apart from the adults who care for him and Bobby who of course is always his best bud.
Alec, left and Bobby, right
When the twins were younger, I used to fret about this a bit when it came to party time. Should I invite six of Bobby’s friends and six of Alec’s ‘friends’? I mean the term 'friends' here in the sense that Alec would rub shoulders with these kids on a daily basis at school.
Well, to invite them might make me feel a bit better about it, but would Alec give a monkey’s? No, he wouldn’t. That would be the same as opening my wallet and sticking all my money down the drain.
In fact, Alec appreciates his brother’s friends far more, as they have the communication to engage him and boost his social skills, whereas the kids from Alec’s school are all pretty much doing their own thing. Alec adores Jahmahl and has even tried communicating with him.
I got over this party hurdle one afternoon when attending a birthday party hosted by one of Alec’s school ‘friends’. I was filled with admiration for the hard-working mum who had made the whole thing happen, but one look at her daughter’s face was enough to put me off doing the same. The little girl clearly hated it and was howling (maybe it was an over-stimulating environment). If she could have spoken, she probably would have said: ‘Why have you invited HIM? I hate him!’
If Alec ever shows me that he has a particular preference for someone, then they will attend his birthday party. Until then, he’ll have to put up with the grown-ups and cousins who love him to bits, trips to Thomasland – and the cake, which is all Alec truly cares about when it comes to celebrations.
With Bobby, I have learnt that being different isn’t a barrier to friendship whatsoever, as long as you are confident and happy enough to invite those people into your life and you are capable of giving them the signals that they are welcome and learning how to keep friends as well as make them.
Bobby is always the first to approach a new child in the class and befriend them, giving them a tour round the school. His kindness and charm seem to help them to override their tentativeness about befriending a boy who flaps and repeats what he’s heard on TV a lot. On balance, a boy who is willing to make friends on that first terrifying day is well worth the effort, they seem to have concluded.
We gave Bobby the confidence to recognise his autism without worrying about it. He gives off the same vibe to everyone else. That's what we can claim credit for. The rest of it was down to him and personality.
The first day that Bobby attended primary school, he met Jahmahl. Because of his lack of speech (he had a few words when he joined primary) and his lack of maturity for his age, he was constantly surrounded by girls, who thought of Bobby as a giant teddy bear who would be the uncomplaining ‘daddy’ of their pretend play (which was all a giant mystery to him then).
I was really happy that there were kids there who liked Bobby, but I was doubly happy that he had made friends with a boy who liked him for who he was and didn’t see him as a little project.
There was no doubt that Jahmahl had a deeply sympathetic nature and felt protective of his new friend, who he had sussed was a bit different. But the main thing that drew them to each other was a tendency to laugh at the same things.
Bobby’s in Year 5 now and Jahmahl is still his best friend. In many ways they are poles apart. Jahmahl wants to be a free runner when he grows up and bounces off walls in his spare time. Bobby can barely manage a high bar stool. Jahmahl’s hairstyle changes with the season. Bobby’s hairstyle is limited by his double crown and varies between neat and fluffy and very messy.
Bobby has plenty of other friends, but none quite so faithful as Jahmahl. It is such a wonderful feeling when you realise that your own love is not the only unconditional sort that your child will ever earn.
Autism is not a full stop, it’s a portable question mark that changes everywhere you go and with everyone who surrounds you.
Sunday, 25 August 2013
You Take the High Road and I'll Take the Low Road Out of Here...
EVEN as a child, there were moments on family holidays when I seriously wondered whether this was supposed to be actual relaxation or just some sort of endurance test. Like the time I caught my Welly in an underground river climbing a mountain in Scotland, and no one could retrieve it; when I tripped over on a family hike and landed in a cowpat - and when I got stranded on a high rock as the tide came in and was rescued by teenagers who delivered me safely back to my folks. They were reading newspapers on the beach quite oblivious to my peril, possibly because they’d left me in the hands of my older brother, who’d sort of forgotten about me.
So even without autistic kids, I learnt that family holidays are pretty much an exercise in futility if you’re going to a) aim for perfection and b) please everyone all of the time.
Like many other kids with autism, Bobby would rather swim with man-eating sharks than relinquish any precious hours on his home computer. Sorry, that's our home computer.
But like many parents who have a child with autism, we refuse to be entirely led by him, believing that however unwelcome they are at first, new experiences do widen the boys’ horizons and are good for them. Bobby’s default position is ‘no’, but you can’t really change that unless you challenge it occasionally. In the last year, he has learnt that 'no' is really 'yes' when it comes to vanilla ice-cream, Mr Whippy cones and a small selection of fruit and veg. Could The Highlands perhaps meet with his approval if given a chance?
It was a gamble, that's for sure. Let’s be honest, a holiday with autistic kids should be re-named a ‘hell-away’, which would be more accurate but not necessarily what you want to be admitting to friends and neighbours. They always text: ‘Have a great time!’ as if that’s actually a possibility when you’re transplanting two kids who enjoy routine to a new bedroom in a new country with a new daily schedule.
In preparation, all familiar items had been packed as well as some new and interesting sensory toys plus new Thomas DVD for Alec's delight, a Skylanders quiz book and Horrid Henry DVD for Bobby.
All the way up to Scotland, a little voice from the back seat queried:
“Have you packed my DS?”
Yes.
“Have you packed my blankies?”
Yes.
“Have you packed my Horrid Henry video?”
Yes.
“Have you packed the iPad?”
Yes.
“Do they have apples in Scotland?”
No. Of course they do, yes.
“Does the cottage have the internet?”
Er…let’s change the subject shall we?
A brief wander around Gardenstown situated in The Highlands on the east coast, revealed that it was steeper than the fib I told Bobby about Wi-Fi hotspots being readily available in the area.
Built into a cliff, it is beautiful (not close up, but the beach is) and remote. On closer inspection, there was one Spa shop, a phone box, a restaurant (that was permanently fully booked) and a ‘gift’ shop containing the 40 year-old contents of someone’s loft.
A quick scout round the boys’ room revealed several little fishing boats that would be smashed to smithereens by Alec within about three days if I didn’t put them out of sight. The absence of a bath was not a problem. We just referred to the shower as a ‘little boy washing machine’. Bobby won’t have showers but he will readily use a Little Boy Washing Machine, a ruse I dreamt up last year in Wales.
Of course we'd also packed the 'holiday anti-nightmare spray' in the form of my travel perfume. If he asked, Gardinia was the technical name for it and it smelled like mum's perfume because neither monsters or nightmares like parents to be around.
When it comes to beaches, Alec doesn’t care about the Scottish weather. He ran up and down the sand whooping and giggling and could be as vocally autistic as he liked, because there was no one around. He headed straight out to sea chanting his loudest, daring the waves to push him over and laughing helplessly as he got sloshed and soaked by them.
I followed him in and – freezing cold - held onto him as the sand rushed away from under our feet. This was the highlight of the holiday for me. The sea is an endless sensory experience and Alec, who struggles with so much in life, seems truly at peace when he’s dashing in and out of rock pools.
Bobby, not the outdoors type, had a bit of a paddle and then recreated some Roblox scenes with stones on the beach. As he’s got older, his autism shows itself in more subtle ways. Rather than tantrum at new surroundings, he shows a rise in ritualistic behaviour. This makes sense to me and I ignore it unless he seems genuinely distressed.
Alec, meanwhile, has got really clever at manipulating me with non-verbal signals. A while back, he pulled down his lower eyelid to show me that his eye was hurting. I made such a fuss of him that he learnt it was a great way of extracting sympathy from mum. On a castle visit, we scanned the information at the entrance to a bedroom we were peering at. We have learnt to read two paragraphs in about 20 seconds, before Alec ducks under the rope or Bobby announces rather loudly what he thinks of the place.
Alec turned to me and, pathetically and very deliberately, pulled down his lower eyelid. This was Alec-speak for ‘this is sooooooo boring’. Once we’d convinced Bobby not to bounce his Mario and Luigi toys along some 400 year-old chaise longue, we emerged into some actual sun.
We were just making a fuss of some friendly ponies when we noticed that Alec had become rather quiet. Looking behind me, I saw that he had stuck his leg through a cattle grid and was waiting patiently, if a little woefully, to be rescued. This is very typical of a passive autistic child. Most kids would scream their heads off and wave their arms about. He just looked a bit perturbed and whimpered slightly.
The rescue was done without fuss (by two of us; I was making a bloody huge fuss) but it summed up the holiday for me. Whether on sea or on land, it’s not Alec but the constant vigilance he requires that makes life tricky on holiday. Poor Al finds at least 5 ways a day of potentially ending his life and you can triple that on holiday, where the hazards are less well known and he's just as brave as ever.
I’m sure there are some parents who sit and read a book on the beach by the time their kids are nine years old. That day will never come for us, and the way we accept it is by introducing the breaks to our lives in other ways – with a girls’ weekend away for me, or a golfing weekend off for Gavin. If we're lucky, a trip away for both of us happens occasionally.
My own relaxation arrives on September 4th at 9am, when the twins go back to school. That, my friends, should be declared as National Duvet Day for all parents who have kept their kids happy for the summer. Particularly those who have managed it with autistic ones.
If this is you, I thoroughly recommend catching up on the housework only after you've had a massive coffee, put your feet up and patted yourself on the back.
So even without autistic kids, I learnt that family holidays are pretty much an exercise in futility if you’re going to a) aim for perfection and b) please everyone all of the time.
Like many other kids with autism, Bobby would rather swim with man-eating sharks than relinquish any precious hours on his home computer. Sorry, that's our home computer.
But like many parents who have a child with autism, we refuse to be entirely led by him, believing that however unwelcome they are at first, new experiences do widen the boys’ horizons and are good for them. Bobby’s default position is ‘no’, but you can’t really change that unless you challenge it occasionally. In the last year, he has learnt that 'no' is really 'yes' when it comes to vanilla ice-cream, Mr Whippy cones and a small selection of fruit and veg. Could The Highlands perhaps meet with his approval if given a chance?
It was a gamble, that's for sure. Let’s be honest, a holiday with autistic kids should be re-named a ‘hell-away’, which would be more accurate but not necessarily what you want to be admitting to friends and neighbours. They always text: ‘Have a great time!’ as if that’s actually a possibility when you’re transplanting two kids who enjoy routine to a new bedroom in a new country with a new daily schedule.
In preparation, all familiar items had been packed as well as some new and interesting sensory toys plus new Thomas DVD for Alec's delight, a Skylanders quiz book and Horrid Henry DVD for Bobby.
All the way up to Scotland, a little voice from the back seat queried:
“Have you packed my DS?”
Yes.
“Have you packed my blankies?”
Yes.
“Have you packed my Horrid Henry video?”
Yes.
“Have you packed the iPad?”
Yes.
“Do they have apples in Scotland?”
No. Of course they do, yes.
“Does the cottage have the internet?”
Er…let’s change the subject shall we?
A brief wander around Gardenstown situated in The Highlands on the east coast, revealed that it was steeper than the fib I told Bobby about Wi-Fi hotspots being readily available in the area.
Built into a cliff, it is beautiful (not close up, but the beach is) and remote. On closer inspection, there was one Spa shop, a phone box, a restaurant (that was permanently fully booked) and a ‘gift’ shop containing the 40 year-old contents of someone’s loft.
A quick scout round the boys’ room revealed several little fishing boats that would be smashed to smithereens by Alec within about three days if I didn’t put them out of sight. The absence of a bath was not a problem. We just referred to the shower as a ‘little boy washing machine’. Bobby won’t have showers but he will readily use a Little Boy Washing Machine, a ruse I dreamt up last year in Wales.
Of course we'd also packed the 'holiday anti-nightmare spray' in the form of my travel perfume. If he asked, Gardinia was the technical name for it and it smelled like mum's perfume because neither monsters or nightmares like parents to be around.
When it comes to beaches, Alec doesn’t care about the Scottish weather. He ran up and down the sand whooping and giggling and could be as vocally autistic as he liked, because there was no one around. He headed straight out to sea chanting his loudest, daring the waves to push him over and laughing helplessly as he got sloshed and soaked by them.
I followed him in and – freezing cold - held onto him as the sand rushed away from under our feet. This was the highlight of the holiday for me. The sea is an endless sensory experience and Alec, who struggles with so much in life, seems truly at peace when he’s dashing in and out of rock pools.
Bobby, not the outdoors type, had a bit of a paddle and then recreated some Roblox scenes with stones on the beach. As he’s got older, his autism shows itself in more subtle ways. Rather than tantrum at new surroundings, he shows a rise in ritualistic behaviour. This makes sense to me and I ignore it unless he seems genuinely distressed.
Alec, meanwhile, has got really clever at manipulating me with non-verbal signals. A while back, he pulled down his lower eyelid to show me that his eye was hurting. I made such a fuss of him that he learnt it was a great way of extracting sympathy from mum. On a castle visit, we scanned the information at the entrance to a bedroom we were peering at. We have learnt to read two paragraphs in about 20 seconds, before Alec ducks under the rope or Bobby announces rather loudly what he thinks of the place.
Alec turned to me and, pathetically and very deliberately, pulled down his lower eyelid. This was Alec-speak for ‘this is sooooooo boring’. Once we’d convinced Bobby not to bounce his Mario and Luigi toys along some 400 year-old chaise longue, we emerged into some actual sun.
We were just making a fuss of some friendly ponies when we noticed that Alec had become rather quiet. Looking behind me, I saw that he had stuck his leg through a cattle grid and was waiting patiently, if a little woefully, to be rescued. This is very typical of a passive autistic child. Most kids would scream their heads off and wave their arms about. He just looked a bit perturbed and whimpered slightly.
The rescue was done without fuss (by two of us; I was making a bloody huge fuss) but it summed up the holiday for me. Whether on sea or on land, it’s not Alec but the constant vigilance he requires that makes life tricky on holiday. Poor Al finds at least 5 ways a day of potentially ending his life and you can triple that on holiday, where the hazards are less well known and he's just as brave as ever.
I’m sure there are some parents who sit and read a book on the beach by the time their kids are nine years old. That day will never come for us, and the way we accept it is by introducing the breaks to our lives in other ways – with a girls’ weekend away for me, or a golfing weekend off for Gavin. If we're lucky, a trip away for both of us happens occasionally.
My own relaxation arrives on September 4th at 9am, when the twins go back to school. That, my friends, should be declared as National Duvet Day for all parents who have kept their kids happy for the summer. Particularly those who have managed it with autistic ones.
If this is you, I thoroughly recommend catching up on the housework only after you've had a massive coffee, put your feet up and patted yourself on the back.
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.
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).
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).
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