A Good Start

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arthur bday2It is Louis’ birthday today so I thought he could provide the photographs today. Google came up trumps and I managed to find some Merlin figures. His grandparents asked me to buy him an Arthur outfit and again google was my friend. He’s been happily playing at knights all day, and we haven’t even had that many dead-Arthur impressions.

In talker-related news we’re off to a good start. Today I was discussing with my Mum and Richard when the 12th night is – for the all important tree-down operation. We couldn’t work out whether the first night is the 25th, or whether you start counting from Boxing day. Anyway, mid discussion Archie appeared Christmas gone Sunday. I told him the Christmas tree is going to come down tomorrow rather than Sunday, a day when he has respite  at Downham House. He listened then said Christmas tree gone Saturday after Downham. It is a small sentence but actually pretty amazing. He understood that the Christmas tree has to come down but more than that, told us he wants to be there to see it come down. Left without instruction from Archie we would probably have taken the tree down while he was at respite which may or may not have caused grief on arrival home. Only the parent of a severely autistic child can truly understand the relief at having probably avoided a meltdown…..

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Sibling communication


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Being the sibling of someone with severe autism is supposedly a bit of a mixed bag. Research shows both benefits and potential problems for siblings. Archie’s brothers are younger than him so have always had autism in the family, they’ve never had to adjust and both have grown up very accepting and protective of their brother. The main disadvantages centre around certain activities being difficult for Archie. Trips to the cinema or Pizza Hut tend to take place when Archie is elsewhere for example. In the case of Pizza Hut a reduction in the number of visits might be seen as an advantage by some.

Archie has always rubbed along well enough with his brothers. He was a bit shocked by Joseph’s appearance – probably our fault, we misjudged how much he might understand and so didn’t tell him that much in advance – a baby just appeared. When Louis was born Archie showed a real interest, and didn’t even object when a toddling Louis would make himself comfortable on his lap.

However, in all these years communication has been a bit lacking. Archie tended to communicate mainly with me prior to the arrival of the talker – presumably because I was the person most likely to understand him. But gradually over the last year he has started to talk directly to his brothers a lot. He often asks them to find something for him on Google Maps or YouTube, and in the photos below he’s telling them it’s time for lunch.

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Two words….

narrator

 

Two words I didn’t imagine I’d ever see together.  ‘Archie’ and ‘narrator’.

He was word perfect. Scared not (an adaption of ‘Be not afraid’)

Little by little the talker is changing Archie’s world. Merry Christmas everyone!

Countdown to the end of term

Archie always finds the last few weeks of term difficult. He knows the school holidays are approaching and everything is going to be diffy diffy different (as we say) and this makes him somewhat anxious.

He was getting himself a little wound up last night. After a bit of shouting my mum wrote out a countdown of days for him. We then used the talker to go through how many sleeps there are until school shuts. Archie then spent some time matching my mum’s list to his talker. I was quite impressed with his literacy to be honest, he had no problem picking out the days on the sheet of paper.

Peace was restored.

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.

Use your words

It is getting colder now and Archie and I have taken to getting half changed into our wetsuits at home before setting off for the beach. I do realise that one day my car is going to break down, or I am going to get stopped by the police wearing my wetsuit but at least I’ll be warmer getting changed for surfing. Archie likes it because he can get on with the business of stalking handbrakes as soon as we arrive at Bigbury.

 

Archie’s now well and truly going through puberty. His voice has broken although unfortunately he hasn’t taken to sleeping in until midday. I live in hope.

He also gets teenage moods and will sometimes hit out during these. This is all fairly new for us. We’ve become, over the years used to Archie hitting himself or the walls when cross but he’s never really lashed out at other people. It also took me a while to realise that these episodes don’t appear (usually) to be directly linked to an external cause. It seems to be more common that they occur when Archie has a thought or memory that makes him emotional. It’s therefore often incredibly hard to see these coming. However, I’m getting better at recognising the warning signs and am encouraging him to use his talker to tell us what is upsetting him before he lashes out. We’ve also used the talker to discuss what happened after the event and he will usually say (unprompted) that he is sorry. He seems able to talk about these events even a few days after they have occurred and shows real signs of reflection on his behaviour.

Unfortunately it is going to take a while longer before Archie is fully in control and it is fair to say that keeping a lid on his emotions is hard for him but we do see progress. Today on the way to Bigbury we had a moment where I saw that he’d thought about something that was  upsetting him. I told him to use his words. And he did Chewbacca walking beach tomorrow. Never mind how impressed I was to hear a 4 four word sentence it was also an explanation. It’s not one that I would have guessed at, but I suspect he was suddenly anxious because usually we walk Chewbacca at the beach on Saturday mornings. Today we were surfing so had no dog with us which must have felt wrong in some way to him.  Once he’d expressed his concerns, and I reassured him that yes we can walk the dog at the beach tomorrow he relaxed again. The rest of the day was pretty chilled. He had a great surf and inspected a lot of handbrakes.

 

Favourite moments

I put quite a lot of thought into our trip out on Friday. Louis wanted to see the statue of Brunel, and Archie loves the Tamar Bridge. The dog needed walking and a walk across the bridge and back with the dog, taking in the statue seemed to a good way of keeping everyone happy. We scored a bit of a jackpot as well when a train made its way across the Brunel bridge. We even spent time underneath the bridge checking out the structure. A  favourite activity for Archie.

I was genuinely interested therefore when I asked Archie what his favourite bit of the day had been. His reply? Chips. Yep, after the walk, we’d driven (at Archie’s request) over the bridge to Burger King and this was the favourite part of the day. Chips.

The talker did come into its own at Burger King. That particular branch wins the prize for the slowest service in a Burger King anywhere in the UK. In the past this wait would have led to a very noisy reaction and probably some full on on the floor meltdown action. On Friday however Archie sat with his brothers and waited. He shouted out occasionally but on the whole was happy to make his point by saying cheeseburger cheeseburger cheeseburger. Apparently it was worth the wait.