Apologies there’s been a bit of a break. We’ve all been ill in turn, which always puts me behind with work and everything else slips in the catch up. Actually the being-ill was interesting post talker. Archie developed an eye infection, which then spread into his cheek. It was pretty grim. I found the child who has never worn a plaster in his life trying to stick plasters over his eyes and raiding the freezer for ice. We eventually managed to get him seen at the eye infirmary (after he told me eye different and eye bad and eye hurt). I took Joseph with me to help out, (never having tried to take Archie to a hospital appointment alone before), but he wasn’t really needed. The days of trying to get behind every closed door may be over. Archie was extremely good during the examination as well, resting his chin on the contraption that allowed the doctor to look into his eyes. Very different from our journey to x-ray four or five years ago where we had 5 people trying to hold him down for a shot of his suspected broken ankle (we never did manage to get the necessary shot). This time Archie only became noisy when he heard the doctor say he needed to stay off school. Staying off school doesn’t really go down very well.
We haven’t been surfing, we’ve been too ill or it’s been too cold and Archie hasn’t been keen. Until today really when he told me Harry yes surfing so I hope Harry’s back is better. I’ll start tracking the forecast again, if the temperature reaches 10 °C I’ll book us in. We have been dog walking a lot. Lucky Chewbacca.
I have started to try and target some language on the talker. I have been pushing a bit to try and get an understanding of Archie’s comprehension. So today for example while on the beach I asked whether today was ‘colder’ or ‘hotter’ than yesterday (I’m not sure whether ‘warmer’ is understood yet) and Archie was able to tell me that it was hotter (it was, by some distance). I have been keeping these instances very much grounded in what we are doing at the time, Archie still doesn’t really like to do work with me.
One very special moment today. Archie has been insisting on the same CD for weeks in the car, and it’s been beginning to drive me mad, (Variations for anyone interested) so today I insisted on playing music from my phone. This is a slightly eclectic mix that includes favourite tracks of mine and the kids, including ‘Revenge’, a bizarre Minecraft parody of Usher’s DJ got us falling in love again. As the song started playing Archie joined in with some gusto – and we sang along to various tracks the rest of the way to Bigbury. Archie can actually sing well and in key, he just rarely does, but today he was up for it. We arrived at the beach beaming – nothing like a belting sing-song to raise the mood.
For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.
Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.
The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply. I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday.He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen. The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.
The sun showed its face briefly this week, and Archie appeared talker in hand, very excited; washing help. I’ll admit I was confused, and at first thought that maybe he had spilt something. Upstairs. Nope I was still confused. A 1, 2followed by a jabbing point out the window clarified it for me, Archie was telling me that our next door neighbours had hung their washing out on the roof terrace (1,2 representing the 2nd floor).
I was faster today when he appeared with a pegs upstairs. And he was delighted, and joined me by the roof terrace door to watch the neighbour’s sheets, grinning from ear to ear. I have always struggled to understand the obsession with washing lines, but it’s been there for many years.
Slightly more conventionally Archie seems to have suddenly turned very teenage in his interests, although maybe a couple of decades out of date. After hearing a CD in the car he has been playing The Stone Roses pretty much non-stop. Yesterday I found him playing Waterfall on the iPad and iPod simultaneously.
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.
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.
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.