Archie’s bus broke down near school today. He finds broken-down buses very difficult to deal with and can quickly become pretty challenging. His lovely teacher was on hand to bring him back to school and then rang me and offered to run him home in her car.
Archie of course loved this, being given a lift home by his teacher and TA in a different car is his idea of heaven. Someone new to instruct in handbrake usage (on every time the car stops please). He’s pretty keen to repeat the experience and soon told me Helga car home tomorrow followed by a reluctant not. He then, hopefully tried his other class teacher and the TA who had accompanied him home. Barbara car tomorrow. Jane car tomorrow. In both cases a not did eventually follow.
The topic of conversation was a revisited a few times and I suspect by the end of school tomorrow his teacher will never want to talk about the trip home again. I’ve finally entered the 21st Century and bought myself an iPhone which captured the little video below.
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.
We have had our dog for a couple of years now. Something that surprised me at the beginning was the number of conversations with strangers that resulted from simply being out and about with a dog. Today, on the beach I had several doggy related conversations as we compared our respective hounds.
Being around the public with Archie is similar. He will often draw attention to himself with his behaviour, and whilst we do sometimes have to suffer the inhalations of the tut-tut brigade we do also get to meet some really lovely people. Today, we visited the beach a little bit later than usual, which meant quite a few cars were leaving. If Archie spots a car that looks as if it is about to move he will dash over and stare slightly disconcertingly through the window at the handbrake willing the driver to release it. He doesn’t touch the car, although he can rather risk his feet being run over at times (I do move him out of the way) and if someone winds down their window he will stick his head through and point at their handbrake. Drivers responses vary. Some get really quite stroppy, occasionally angry. Sometimes they even swear (yes, at Archie), some strike the hands on hips pose while some look utterly confused. Others; my favourites, will have a conversation with us and even give Archie a guided tour of their handbrake. Some put the handbrake up and down several times. Today someone suggested that Archie operate his handbrake (I did say that probably wasn’t a good idea), and Archie used his talker to tell him handbrake down.
I sometimes call Archie my filter. He fast tracks me to the lovely people out there.
It has been a year since we took delivery of the talker. In that time it’s become an extension of Archie and I think of it very much as his voice. Below I’ll post the video taken a year ago straight after the talker had arrived, followed by a video of a general chat taken this week.
Archie is becoming creative with the talker, in a way I hoped he would. So last week for example, on arrival at the beach I asked him whether he wanted to wear his coat or my furry one. It occurred to me as I said it, that there probably was no word for ‘furry’ on the talker. This made no difference, without hesitation Archie said ‘ferry’, it’s close enough to be obvious what he meant. It also demonstrates that he is not using the talker as a symbolic device. The sequence for ‘ferry’ may end with the picture of some sort of boat, but the key clearly does not represent ‘some sort of boat in which I travel to Ireland’ in Archie’s head. He’s using the talker in the way we use our mouth to speak, or perhaps more similarly our hands to type. A fixed motor pattern produced by Archie results in the talker broadcasting a collection of sounds which allows him to be understood. The same motor pattern produces the same word each and every time. Incidentally Archie has previously used the ‘ferry’ key to mean ‘some sort of boat’, so this is not a case of misidentification. It was a choice of way to communicate the word ‘furry’.
The talker has also allowed Archie to have more say over what he does and his wishes and desires. My parents have been away for the last three weeks and so Archie has been accompanying me in picking his brothers up from school. He’s always quite enjoyed this but by the end of the second week was beginning to become anxious and we had a difficult pick up on Thursday. In the past I would probably have assumed this was a one off and would have taken him with me again the next day. Using the talker he was able to say Joseph Louis school tomorrow daddy car. And so Daddy did pick them up and we had a peaceful, relaxed time at home. He’s been able to check that he won’t be doing the pick ups next week Monday Joseph Louis granddad car.
Archie is using the talker well at school, both academically (e.g. in literacy) and in general commenting. This week he had a TA from a different class covering in his class for the day and he was able to check back class tomorrow. Archie being Archie he’ll use it to tease as well, such as talking about taking people’s glasses off. And he’ll use it to apologise. A real sign that he cannot always control the way he behaves. Such are the trials of severe autism.
This year, for the first time ever I have found myself saying things like ‘Archie said…’ or ‘Archie told me….’ I have seen the relationship between Archie and his brothers strengthen. They even argue now, another first. The first year has been a series of small steps but we seem to have travelled a long way.
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.
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.
Louis’ has some holiday homework to complete on the Victorians this half term so we decided to take a stroll over the Tamar Bridge to check out the statue of Isambard Kingdom Brunel. This gave us a good view of Brunel’s bridge, although Joseph seemed a little worried that Archie might be keen to get closer.
When we eventually arrived at the statue Archie was more interested in getting into the pub next door for pop but did pose with his brothers.
His choice of the word ‘pop’ interested both me and Flo (our helper for the day, Flo is a speech and language therapist who has been helping us out since she was a student). It wasn’t a word that either of us would have expected Archie to be familiar with really. We discussed how many words Archie uses now that he had no way of expressing before he had his talker.
This screenshot gives a snapshot of the type of vocabulary he can now use. He couldn’t have communicated pop or tunnel for example, or park, or chewbacca, or not going to the beach today. And he couldn’t have shared his comment on the area under the Tamar bridge (as we sheltered from the rain) dark. It was as well.
The talker has given him the opportunity to join in our conversations and to take an active role in commenting on the world around him. He’s no longer forced to be passive around language, he can shape it and use it and insist that we listen. Whether he’s asking to go through the tunnel, or telling us something is dark, he has his voice. Oh and thanks to the talker we did end up taking Chewbacca to the park in the heavy rain. He was able to argue for what he wanted (and won).