There’s a line in Priscilla Queen of the Desert (well the musical version anyway) where Tick introduces his son to Bernadette with a ‘SURPRIIIIISE’ and Bernadette falls over. It’s funny and it’s been replaying in my head this week quite a bit.
First time was when I asked Archie his address. And he told me. His address isn’t stored as a phrase, he had to find each word separately, which he did without difficulty. He knew his house number as well.
Next surprise was when I sat down with him to read bloody Biff and Chip (I clearly celebrated too early when Louis finished Biff and Chip a few years ago) with him this week. I decided to point to a few words to see if he could read them by finding them on the talker. Mum, Joe, dinner, carrot, eat, and, home, finished were no problem at all. He found them without hesitation. After one page he’d had enough of reading, but still I was impressed. This was done with a typical teenage reluctance to engage in homework (one eye on the iPad).
I thought it time to update with a couple of short videos, these were taken today. Notice how he’s now playing whole phrases after he’s found each word. Also ‘not’ seems to have moved into the correct position in the sentence. And there’s a little joke where he says yes to something he knows he isn’t getting. Notice as well how at ease he is producing these longer sentences.
We had a good day today, met up with some friends holidaying from Cambridge who have a severely autistic son and descended on Bigbury en masse for a surf. Archie apparently had the best surf ever with Harry. There were big waves and in-between sets he sat patiently out the back waiting without any fussing. This may have been in part due to him being half asleep having been up from 2am this morning (he was staying with my parents thank God), but anyhow it led to a good surf. I managed to actually turn the board and ride along the breaking wave for the first time ever, although I had to jump off to avoid someone standing in the way. Louis had a fabulous time, happily falling off and attempting to stand, he was getting deeper as well tackling waist deep water. Joseph wasn’t so keen on the slightly bigger swell – put him on a stage in front of a thousand people to sing a duet with a household name and he’s relaxed and happy, excited rather than nervous. Crank the swell up to more than a foot and he’s worried. It’s times like today that I’m aware how much my children really are their own people.
After the surf we headed back to our friend’s holiday apartment. Joseph and Louis messed around on the couch together, Archie really enjoying his brother’s attention. They were snuggled up messing around happily entwined. So often I find that people assume that those with severe autism are incapable of affection and do not desire human contact. In Archie’s case this simply isn’t true. He often settles himself down on my lap and as the photo shows is fond of this brothers and will seek them out to mess around with.
Yesterday Archie asked me whether we could take a trip on a train today. I agreed, which was met with some excitement, and decided now Archie is a little calmer to combine it with a trip to Cothele, a local National Trust property. We took the train to the picturesque Calstock and then walked the one and a half miles to the property.
The whole trip was a reminder really of how far Archie has come. Last time I took a train with him he screamed while waiting for it to start, this time he sat pretty quietly, last time we went to Cothele he ran madly through the house, today he waited quietly for people to walk past him and checked with me before diving up some stairs. In the past I’ve felt that keeping control of Archie out and about is a bit like containing Road Runner. Things are on the whole calmer now although he certainly has his moments and sometimes there can be noise (not today, he was very calm).
Archie took his talker (of course) and use it to comment throughout the day. For example, I wondered aloud whether we should go into the house and he decided that yes we should, so we did.
Yesterday we had one of those conversations that we really couldn’t have had without the talker. Fed up with listening to the same CD (known as Louis’ music)on loop I told Archie that we were having my music on the way back in the car (currently an eclectic mix of Ben Howard, Priscilla Queen of the Desert and Cosmo Jarvis). He accepted this, then after about 5 minutes said Louis music Tuesday Louis music Saturday. I agreed that I could tolerate this and he settled back smiling.
Not however smiling quite as broadly as he was on the train today. This smile was reserved for the glimpse he had of The Tamar Bridge and Brunel Bridge.
Just a quick post today. I headed to the beach to meet a friend staying in Bigbury on holiday. After lunch Archie and I did the usual dog walk – easy today because the tide was out. We walked around the corner and along the river, where, Archie sat down. This doesn’t sound like much, but Archie never sits down at the beach. Usually we walk, surf, do whatever we came to do, eat, then leave. Sitting and admiring the view isn’t part of the plan. I was delighted, he looked very content sat watching the river running some sand through his fingers occasionally. I’m hoping now that it wasn’t a one off.
I think I committed a cardinal sin in the autism-blogger world by not blogging at all during April, autism awareness month. I had a couple of ideas for posts, maybe something about surfing, or something about how under-used AAC devices are in the UK. After all these are the two topics I’m happy to promote awareness of, both within and outside the autism community. I was held up for the first week of April by work and then ended up rather depressed by the whole autism awareness month thing. My Facebook and Twitter feeds reminded me how terribly political autism is. I nearly ended up writing a post on how autism is really autisms and we in the autism community maybe need to be more mindful of the different needs of the various groups that make up so-called autism. But life carried on and I never really managed to put a coherent post together.
So with autism awareness month out of the way for another year it’s time to update on Archie’s progress. A lovely new development, that I have to admit I am enjoying is that Archie is now arguing with me. A typical exchange occurred today:
Archie: Granny and Grandad Ireland’s house tomorrow Me: No Archie we’re not going to Granny and Grandad Ireland’s house tomorrow
Archie: Yes Me: No
It perhaps doesn’t seem like much, but considering it’s not that long since Archie realised he had choices it reminds me how far he’s come in the last few years.
We’re also back in the water. After a 3 months break we’re finally managing to get surfing again. Archie has been overjoyed to be back out in the water with Harry. I’ve discovered that taking a break from January has left me really unfit, but we’ve had some fun Sundays catching waves in the sun. Archie and Harry have had some long runs into the beach on some mellow waves while I’ve been spending most of the time falling off an SUP. I had some success and managed to catch a (very small) wave standing. I think Archie’s going to be in his spring suit for the next trip out and I’m going to be able to bin the boots. Life gets better.
I don’t have much in the way of recent photos so I’ll link to the first surf video I took of Archie to celebrate the start of summer. He looks very young in this video but seems to be spending a lot of time watching it at the moment. I did genuinely seek permission to use the accompanying Aphex Twin track as well, one of Archie’s favourite tunes.
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.