14th August 2016
It was, as always, lovely to see Jamie today – the highlight of my week and an increasing feeling of joy as he seems to be settling down after months of challenging behaviour, anxiety and poor health. Generally Jamie is headbanging much less – why? Well, mostly because we have insisted that he has a higher maintenance dose of laxative, so he is not getting the terrible impactions and constipation that was a daily feature of his life. I cannot imagine what the constant abdominal pain and discomfort must be like for him – no wonder he gets so upset, but trying to convince healthcare professionals is so hard. So many seem to have their own agenda and will not look at Jamie as an individual, who can react differently to other people, both behaviourally and physiologically.
When we arrived at his flat, Jamie was naked – as he so often is J. Normally when he sees us he puts his clothes on relatively quickly – he loves coming out with us in his car and having a picnic. It might seem boring to many, but Jamie loves his routine and the fact that we do the same thing each week, even down to him eating the same foods (at least he is eating!!) means he feels safe and protected and can really enjoy himself. Today, however, Jamie did not get dressed and he seemed to have quite a lot of back pain. Now, with Jamie, since he does not communicate in any way, we can only guess at what is wrong. But he was walking in a strange way, and one side of his back seemed to be troubling him. It may have been a problem with his kidneys, he has just had a urine infection. Or it could have been something totally different. We gave him some paracetamol and time to settle down. Although he did not want to get dressed, he did not really get upset or anxious. Just kept picking up his clothes and shoving them out of his flat. This is pretty much a major breakthrough as before this would always be a time when a major eruption of headbanging would start, distressing everyone, but most of all Jamie. Horrible to watch, but even more horrible for him to go through this.
We decided he probably didn’t want to come out today and his support worker went to get him some dinner. When it arrived – and it looked pretty yummy J, it went straight into the bin, along with is yoghurt for pudding! Oh well, Jamie, I guess that was not what you wanted!! Jamie then went and got his clothes, but he still wasn’t happy, so I got the basket of his underpants and he chose a different pair from them. (Jamie’s is given only 3 sets of clothes, because too much choice totally overwhelms him and he just cannot choose if he has a drawer full – it makes him terribly anxious and upset.) All his clothes go together in sets and woe betide us if we get them wrong – he knows which pants belong with which set, even if they are all the same colour! It is very important to him. Eventually he decided to dress and come out – major achievement, especially with very little upset and headbanging.
So we went on our usual jaunt – to the supermarket to get his picnic, then to the RSPB nature reserve to sit in the car park and eat it J Jamie loves this routine. The nature reserve has a wind turbine and he loves to watch it through the car’s glass roof. But he still won’t get out of the car and have a wander round. We don’t push it, if he doesn’t want to, he doesn’t have to, I won’t upset him on our Sundays, they are so precious and I always hope that one day he will want to get out, but if he doesn’t, then that’s fine too.
After he has eaten, we go back to his home. Because it is really quite late by now, we don’t go for our usual drive and when we get back to the site, Jamie is really reluctant to get out of the car – not entirely sure why. In these situations, we wait for a while – about 15-20 minutes, then Andy gets in the back seat of the car, on the other side to Jamie. He chats to him for a while, and holds his hand. Then he slowly sidles over, so Jamie is squashed more and more. Now Jamie does not like this, do he decides that he will be ok getting out of the car after all. We have found this is the way to do it with the least anxiety and fuss – another example of Andy’s careful analysis of situations and how the deal with them.
So now Jamie is out of the car and then stands there and refuses to come in. When we try to guide him, he gets upset and starts headbanging. So we wait…. And wait…… and wait…….. He is quite safe, the car park is not busy and he is safely in a corner. We stand around and Jamie is eyeing us from the corner of his eyes, as he does when he doesn’t want to be seen to be looking J Andy and I decide to start moving towards the building where his flat is. We walk some distance away – about 15 metres, then Andy drops the car keys on the floor and I drop his coat and rucksack on the ground – a little distance away from us. This is a useful ‘trick’ that we have learnt over time – from a support worker who was really empathic with Jamie. If something is dropped on the floor he will come and pick it up and hand it to you, as he knows it is not supposed to be there! Anyway, it did the trick and he came over, picked up the keys, coat and rucksack – the latter had to be put on. They are always worn, however warm it is! And he came with us, quite happily to his flat. I think this behaviour was because he wanted to go for a drive, but without the communication we don’t know for certain. We always monitor this type of behaviour carefully, making sure as far as we possibly can that all is right in Jamie’s world. He was back in his flat and happily stripping off his clothes before having a cup of tea and relaxing for the rest of the afternoon.
Jamie’s fairly unusual behaviour today could have been because we are getting to that time in his seizure cycle, when he begins to feel not so good. It must make him feel strange – he gets so anxious and easily upset, if only he could tell us what he feels like and how we could help him – but he can’t and so we guess most of the time, not always successfully!!
I have set up Sky for Jamie – he has loads of TV programmes, plus Sky sports and he is absolutely loving it, especially the Disney channel J I hope that it settles into a pleasurable thing for him to do in his flat but does not become too over-riding in his day-to-day life. There are always things to second-guess with Jamie and it is usually impossible to get it right!!!!!
We will follow up on Jamie’s backpain to see if we need to do any more for him.
Until next time.