It was Richard’s birthday this week. He’s a nightmare to buy for, all he ever wants is chess books (yawn). However, he did have a fantastic surprise this year. Staff at Archie’s school turned one of his pieces of artwork into a card. Apparently he did all the work himself, copying from an adult demonstration. A long way from the scribble we had for so many years. I’m pretty impressed with how well he’s written his name as well.
The picture is recognisable I think; Plymouth Hoe – and a fab representation of Smeaton’s Tower (as an aside Archie loves a trip up Smeaton’s Tower but gives me the heebie jeebies when we visit by pressing flat against the lighthouse glass and leaning over the railings at the top).
First surf of 2013 today. There was a decent enough swell, although it wasn’t huge like the session before Christmas. I took along my little Flip video camera, but Harry paddled Archie out the back so on the whole they were teeny tiny dots in the distance. They came close enough to video once:
It wasn’t particularly cold today, but we do have a problem with Archie’s hands, in that they seem to shut down when surfing in the winter. The photo below shows two very white fingers (middle finger of his right hand, and index finger of his left hand). He is already wearing very thick gloves, I am going to have to investigate heat pads for him to have stuffed into his gloves while surfing.
Post surf Archie warmed up in the car. We left the talker at home today. I recorded the little snippet of non-talker conversation during the post surf warm up. I think it shows how unclear his speech still is although with me very much leading this particular conversation we manage to understand each other without problem. We had a slight difficulty at the cafe after the surf. I told Archie he could have some more chips if he wanted but he asked for nannee. I interpreted this fairly confidently as ‘pasty’. NANNEE he said again with a frown. With no talker we were into playing guessing games. Cheeseburger? No nannee. I tried pasty again. Absolutely not. Eventually Archie pointed towards a freezer, ah ice cream? Big smile. Nannee was ice cream. It was fairly easy to get from ice cream to cornetto. Not a great choice for someone with freezing fingers, but hey who am I to argue?
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.
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.
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).
Last year’s annual review opened with the headteacher asking each of us to write a word or phrase which described Archie onto a large sheet of paper. School and respite had a mini-scrap over who got to use ‘good sense of humour’. It has to be said that Archie loves a joke. Aged two he was perfectly capable of pretending to do something he wasn’t allowed to do. So I’d say ‘don’t touch’ and turn around to find him nearly, almost, but not quite touching the forbidden object.
In the video below he recounts how he amused himself removing his headteacher’s glasses at school that day. I’m sure the head was delighted. To quote Archie: NOT
PS We don’t usually have two TV’s, one is waiting for a trip to the dump.