Well today we had a really lovely and interesting day with Jamie. When we arrived at his flat, Jamie was sitting on his bed, having taken all his clothes off. He does this when he is stressed or when he does not want to do something and feels safer sitting like this on his bed. You can’t do anything except wait for him to get dressed again, if he is asked to dress before he is ready, then he will erupt into headbanging.
But Jamie was really happy to see us – we had a beautiful smile. We waited patiently and quietly and talked to him gently, not too much because we have learnt that it is better to be quiet and patient than try too hard to encourage him. We tell him that we can go out for dinner, to his pub, but first he needs to put his clothes on. Then we tell him ‘if you are too long, the pub might shut before we can have our lunch’. Not really a white lie – the pub will shut sometime!! The thing is though, if we are too late getting there, it can get fairly crowded and Jamie can’t cope so well. We can’t turn up and then leave without having our lunch becaue he doesn’t understand why we would go straight out, and it confuses him even more. Jamie was really good though, he didn’t get upset and after a little while he went to get his clothes and put them on without any problems – and it was so funny because he was ‘chatting’ to Andy in his babble-speak and giving him really good eye contact at the same time. I thought to myself – he is saying ‘all right then, I know we will have a good time’.
What we don’t know is why he took his clothes off in the first place – there could have been a number of triggers – there is a new person in the flat opposite Jamie’s – perhaps this has unsettled him a bit; new support staff may also have upset him – this is a particular trigger that often causes him great upset and understandably so, but there is no way round this problem. We have to help Jamie cope with support workers new to him and help him to understand that they are part of his life and will help him, not hurt him.
Anyway, off to lunch we went and he was very good in the car – enjoyed the drive and watched everything carefully out of the window. But during lunch he was fairly anxious and quite unsettled. There were various things that were different which might have pushed up his anziety levels. There were obviously high to start with because of the clothes issue. One anxious moment was that his onion rings – one of his very favourite foods, were served on a different plate. This was quite a worry for him, but he coped well and ate all his lunch without any SIB (self-injurious behaviour). I think he was really good at keeing control of his anxiety levels.
After lunch we went to the sweet shop for his Mars Bar and he was really good – even chose a packet of crisps for later (I know he gets a lot of junk food on Sundays, but the rest of the week he eats really healthily and we use his love of crisps and Mars bar to encourage his good behaviour). He seemed to be very happy and more relaxed, so we risked a stop for petrol. This is often a difficult time for Jamie, and his good behaviour was rewarded with a small Crunchie bar. We passed it to him for him to open but it was not easy and he struggled a lot with trying to open it. A difficult time – do we take it and open it for him? This would be likely to trigger a major outburst because he would think we were taking it away. So we waited and he eventiually managed it – we told him what a clever, good boy he was. Oh dear – I should have known better, he just errupted into a major headbanging and hand-biting episode, he was banging his head on the side of the car window so hard I could see the window moving as I looked into the mirror!
Andy and I just ignored him! Can you imagine ignoring someone banging their head so hard on the car window that it looks as if they may break it? It’s really hard to do, I want to calm him down by talking to him like I do my horses, but it just makes him worse. You have to go against all your natural instinct for protection and love. We turned the radio off and I just carried on driving, Andy just totally ignored him. The funny thing was he stopped really pretty quickly and was just fine again. So why did it happen? What was the trigger? Andy and I stayed really quiet on the way home, but the rest of the trip was uneventful. But on the drive back to our house (it takes 2 hours) we talked and talked about why he had behaved like that, and came to the conclusion that he had found it stressful that the Crunchie bar would not open and then our praise of him, and ‘pushed’ his emotional level too high. We overreact on an emotional level which is too much for Jamie’s sensitive equilibrium. Andy and I think that Jamie finds anything that upsets his emotional stability to be really difficult to cope with.
So today was a funny mix of good and bad – just like most of our days with Jamie! Steps forwards and steps back – that’s how it goes.