Christmas 2012: The Year Arthur Died

Recollections of Christmas in our house tend to be a lot like our memories of trips to Northern Ireland. A series of slightly traumatic family legends:

Remember that year when Archie screamed at the microwave all day and I was 40 weeks pregnant with Louis and ended up with such high blood pressure I had to go up to the hospital to be given cups of tea until it dropped.

Remember that Christmas when we bought that sodding helicopter thing and it took 30 minutes to charge for 2 minutes flight time and Archie almost launched himself through the window with frustration and we had to lose it in the bottom of the bin.

Remember all those years when Archie was only eating 5 items of food and we had to cook gluten free pizza as well as turkey.

So yes, fond memories and all that, but over the years Christmas really has come to mean autism related stress. We’d be happy with a low key Christmas but Joseph and Louis want turkey and trimmings and presents. And more presents.

So this year I started Christmas on Sunday 23rd with a surf. I figured a decent surf might chill Archie out a bit to get him through the next few days. I was a bit dubious as we were heading out to Bigbury; the surf was huge – I think probably bigger than anything he’s been in before and it was all looking pretty grotty. It was too big for me really, and anyway I was hungover, so stayed near where the waves were breaking and tried not to get too mashed in the white water. Archie and Harry looked spectacular. Harry had taken Archie out on an 11 or 12 foot board and they kept heading out the back. Harry was able to slot the board into the massive breaking waves and had the Archie end dangling out of the wave with Archie kneeling above thin air. It really was an example of how skilful the surfers are and dog walkers were stopping on the beach to watch, pointing at the pair of them. A good start and on the way home Archie used the talker to tell me big waves and yes surfing soon.

Christmas Eve we did the annual carol service with Joe then settled down to watch the final ever Melin. Over the last few series Merlin has become a part-family Saturday evening ritual. Joseph, eleven going on fifteen usually spends his time playing Minecraft and shouting ‘grab a diamond sword’ to his friends on Skype in the room next door, but Richard, Louis and I always watch it together. Archie tends to wander in and out watching YouTube or google mapping on the iPad. He was pretty relaxed this week so the emotional finale wasn’t interrupted all that much by Archie appearing iPad in one hand, talker in the other. Granny grandad handbrake up different day doesn’t really add to dark ages bromance. It was a great final episode, although we were all somewhat gutted that Arthur died, and Louis announced it was his ‘worst Christmas present’. More on why it came to represent Christmas 2012 later.

And so onto Christmas day. I stopped buying Archie loads of presents a few years ago. He never opened any – we’d still be finding wrapped presents in the new year, and the whole present unwrapping thing seemed to stress him out. We’d do most of the unwrapping, but if he wasn’t interested once the gift was revealed he would drop it and walk away. I always said you needed no ego giving a present to Archie. We had one very successful year when I bought him a book of photos of Plymouth and not much else and so we learned to think small. He never seems that bothered by the difference in stocking sizes (although I should add the one wrapped stocking present of his was an iPad so he really didn’t miss out this year).

sacks

2012 has been a year of firsts, and Christmas morning was no different. Archie came downstairs, looked for his stocking and FOR THE FIRST TIME EVER, opened a wrapped present himself with no prompting. He was delighted with the new iPad although seemed less delighted that I hadn’t wrapped the pyjamas or boxer shorts in his stocking. This continued and each call of ‘Archie we’re unwrapping some more presents’ led to a thud of feet and him joining us (ANOTHER FIRST).

presentTruly great stuff. The days of only eating five items of food are long gone and Archie stole my dad’s stuffing and mineswept his brothers’ leftovers. I’m not sure why Archie was so much better placed to cope with the differentness of Christmas this year, but I suspect having his talker voice and for the first time having access to language played its role.

stuffingphoto

And so Christmas day was done. We remarked on how calm it had been and headed home. Archie took himself off to bed soon after and I decided to re-watch Merlin on iPlayer to catch the bits that had been drowned out by handbrake talk. I’d just reached the part where Morgana receives a well deserved forged-in-a-dragon’s-breath sword in the guts when I was joined by Louis and Richard. This is followed by the most important ten minutes of the whole series, Arthur’s death. Arthur had got as far as ‘just just just hold me’ when Louis let out the most enormous scream. ‘MY TUMMY HURTS’. Thinking we’d been noro virused I grabbed a bowl (mother of three, I can magic up a sick bowl faster than Merlin) at which stage he screamed ‘NOOOOO I’M NOT SICK I’M REALLY SAD’. Now admittedly Colin Morgan and Bradley James were acting the death scene really rather well but this was followed by lots of gulping sobs and tears and ‘I can’t believe Arthur is dead and I’m never going to see Merlin again’. The last time I saw him cry like this was when ‘his’ (not really but he thought it was) horse died. Richard gave him a man to man talk about how a great King wants to die in battle (he’s been reading too much Bernard Cornwell) while I necked some more wine. Peace was restored and the boys were shooed to bed.

So anyway another first. A Christmas that wasn’t remotely defined by anything related to autism. When we remember Christmas 2012 it won’t be the year the microwave led to eight hours of non-stop screaming, or the year the presents weren’t opened, or the year we gave up on decorations because they were just pulled down (they’re ‘wrong’). It’ll be the Christmas Arthur died, which has to be a step towards typical Christmas memories. Maybe one year we can have a huge family row.

Louis does seem to have largely recovered from the shock today. I asked him why he had been so upset and he said ‘you know I’m sensitive’. Er what? No, I know he’s noisy and bonkers, but sensitive? Ha. Maybe. He’s asked for a set of Merlin action figures for his birthday next week. Time to hit google.

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More ups and downs

I have mentioned on here before about how Archie likes to watch videos of car handbrakes on YouTube. He particularly likes to see them going up and down. This week he’s expanded his video selection slightly and has been watching lifts.

A couple of days ago Archie was sat in the kitchen with the iPad watching a video repetitively; pausing it, rewinding it, and I was vaguely aware of the commentary running on a bit of a loop. It was slightly chaotic in the kitchen as Archie had also selected the music on the iPod; Joseph music by which he meant Consider Yourself from Oliver! (Joseph made it to the final round of Oliver auditions so we heard it rather a lot for a short while; Archie’s been keen ever since). Eventually interested in finding out what had caught his attention, I had a nose over his shoulder. It was the one below, a video of all the lifts in The Glades Shopping Centre in Bromley. The shopping centre Archie used to go in regularly until he was two, when we moved away from Bromley. The shopping centre he hasn’t clapped eyes on since he was two.

A few hours later he appeared next to me with the iPad in hand, Google Maps open. Baby house he said. He wanted me set the little street scene man down outside our old house in Bromley, I did, and he spent half an hour happily revisiting old haunts from his toddler years.

Memories

The last post sort of links to this, but I didn’t want to combine the two as this is a step away from autism.

Archie’s memory is extraordinary. I have posted video about this before. Today I was talking to a friend about dementia, in somewhat simplistic terms the opposite of Archie’s memory. In both cases I suppose the memory isn’t functional as such. Archie’s inability to forget has been known to cause us problems. He became very upset for example on the anniversary of our trip to Ireland and watch out anyone who visits us after a three year gap in a different car. Memory it seems is something perhaps we don’t notice until it doesn’t function in quite the way we want.

My friend reminded me that she had made a short film about memory loss with the wonderful Maxine Peake. It’s not autism, but this film is beautifully shot and worth a watch when you have a spare five minutes so it’s sneaked its way onto the blog. I’m not sure that ‘enjoy’ is quite the right word, ‘admire’ perhaps.

The voice of choice

Another short clip. I found this interesting. We regularly chill and chat over google maps and we’ve always managed to communicate pretty successfully using a combination of pointing, gesturing and vocalisations (from Archie I mean). Here while chatting about some recent roadworks it became important to Archie to have the talker say ‘road’, even though I had shown that I understood what he meant. I think this was his first request for me to find a new word on the talker for him, and he also read (and completed) the sequence himself, so must have understood how Icon Tutor works.

Archie’s humming The Stone Roses a lot this week if you’re trying to place the tune!

Missing words

A number of friends have asked me how easy it is to add words to the talker, or change existing words. It’s actually really very easy and earlier today I attempted to get Joseph, Archie’s middle brother to video me adding ‘stoked’ to the talker. We’re going surfing tomorrow so it seemed a good word to add and a good time to add it. It appears however, that Joe is a better actor than he is cameraman (he hasn’t quite mastered the art of staying silent whilst filming) so that particular clip needs a bit of editing. Another time.

Instead tonight here’s a short clip showing Archie’s work around for a missing-from-the-talker word. We spent quite a bit of time today doing what I call mapping and chatting. So Archie wanders around google maps and points out whatever interests him and we chat about it. Often these are small details such as a lamppost that has changed since the google maps car drove past, or a garage door that has changed colour, or some tiny change that I would never notice. In this clip he’s showing me where some traffic lights have now been installed, but I haven’t added ‘traffic lights’ to the talker yet. He uses a clever (if a little long winded) work around.

New word for the day is….. classroom

Archie has given me a helping hand. After describing yesterday how the talker makes it very easy for us to understand new words he gave a fine demonstration of just this today.

Having his usual post-school stroll around google maps Archie zoomed in on his school and ‘nanee’ – yep the ubiquitous ‘nanee’. I had no idea what he was saying. Obviously.  ‘Nanee nanee nanee’. And because I hadn’t watched as he zoomed into the school I wasn’t sure which way round it was on the screen so had no idea what he was pointing at. ‘Nanee’. Not much help. The talker made it immediately clear – classroom. A word I have never heard him use before (he may have, nanee of course is many things), a word I didn’t even know that he knew. And notice a new word, and intersubjectivity achieved with no screaming.

Little by little, day by day his language is growing.