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We had such a strange and odd time with Jamie last Sunday. Both Andy and I were tired – we had been to Blackpool on Friday – 6 hours of driving and a busy day. Then animals to do on Saturday and outside jobs that need energy; I was fairly knackered before we even got into the car for the 2 hour drive to Jamie’s home. It’s a shame he can’t be closer to us, but there is nowhere suitable for him near to here, his needs are too great – he needs such a high level of care. Also where he is is roughly  halfway between here and London and so it is better for Jamie’s dad and Sophie when they visit. In an ideal world, I would have him at home with me, I would have money so I didn’t have to work and I would have time and help to look after him myself. But it is not an ideal world, I have to work, help and support is virtually non-existent and since North Yorkshire want nothing to do with me and Jamie we would get even less and certainly not what we are entitled to. It’s not the best option for Jamie, and will be even less so as I get older and more senile!

Anyway, when we arrived we were let into the house and met by the high-functioning autistic girl downstairs, who told us ‘Jamie not well’. Well we could hear he was not well, Jamie was upset. That was putting it mildly! Jamie was noisy – he makes a strange noise when he is upset, it is almost like a growl – a cross between a growl and a shriek. Jamie was banging his head – we could hear the thumps as we walked up the stairs. Jamie had stripped all his clothes off and was standing naked in his flat – we could see him when we went in. My heart sank. When he is like this it brings back all the baggage of trying to control his outbursts when he lived at home and I was virtually on my own. Sophie was a tower of strength then, and Jamie was small enough for me to just about restrain him from doing serious harm. So we managed, but it was hard sometimes.

Back to the present – what was upsetting Jamie? That was my first thought. What is wrong with him? His carer told us that he had been upset all morning, but they did not know why. Sometimes it is impossible to tell why Jamie feels bad – he cannot communicate in any way except by banging his head and taking his clothes off. Poor, poor boy – through his life all our efforts have been directed at helping him communicate, – at school he used the PECS system – Picture Exchange Communication System, Here, objects, photos and eventually symbols are used to communicate a person’s wants and needs so that no speech is needed. It has been used to help people with autism to communicate and is pivotal in the TEACCH method of supporting people with autism.  There has been a lot of success in helping children using this programme (http://www.teacch.com/) and Jamie used this all through his education. But to no avail, he still does not understand the concept of ‘if I give you this, it tells you what I want’. Even ‘if I give you this symbol of a biscuit you will give me a real biscuit’. But at his home they still work at this, and he is beginning to understand ‘if I give you this plastic biscuit, you will give me a real one’. It is progress and also he uses coloured squares to show which colour paint he wants to use. Now that is real progress – there is so much processing going on for him to do that, I’m well impressed.

Anyway, I have digressed! We walk in on Jamie, headbanging so hard, naked and clearly extremely upset. He sees us, changes to handbiting and then stops and quietens, He goes and sits on his bed – this is what he does when he takes his clothes off. It kind of tells people that he does not want to do anything. But he was quiet and much more relaxed. I go and sit on the bed with him and Andy comes in and sits on the floor. We talk to him really quietly  – Andy much more than me. It is amazing to watch Jamie – he doesn’t take his eyes off Andy. Why?? He rarely looks at me – eye contact is just not something he does, so why can he cope with looking at Andy. Andy said afterwards that his pupils were huge. This is something I have noticed a lot – even in quite bright light Jamie’s pupils can be huge. At one time I wanted this to be the focus of my PhD – there is research but I will need to look at it in a lot more detail.

We sat with Jamie for about 1/2 an hour, telling him all the time, that he could come out with us for his lunch, but if he didn’t want to that was fine and it was his choice. He was quiet and listening all the time  – I kept rubbing the back of his head which is his favourite thing. Eventually he got the box with his clothes and put on the ones he wanted. No fuss, no bother, just some smiles. But I noticed Jamie was shaking – I have never seen this before. I thought he might have been a bit cold, but he wasn’t. He slowly got dressed and we went to get his coat and bag. Everything took ages and Jamie seemed very unsteady and shaky, however he seemed to be much happier and settled and came with us without any problems.

We went for our usual lunch – we had to sit at a different table – this used to be a major problem, but nowadays Jamie does not mind these things – how he has grown up! Throughout lunch, Jamie was really, really good. He ate everything , apart from his salad and we no longer push him to eat this – if he wants to he will eat it, if he doesn’t he won’t  – the important thing is he can choose. But Jamie struggled with some things – he couldn’t seem to use his fork properly and using the knife was totally out of the question. It was almost as if he had forgotten how to put the food onto the fork. Weird! Then when he had finished eating, he would not stand up – it was strangely as if he had forgotten he had to get up, or he was scared that something would happen if he stood up. I thought – oh no he is going to have a seizure – I have never seen him like this before and it was really worrying. Jamie had been shaking a bit at the table as well, another sign that all was not well.

Eventually Jamie stood up and we went out – he got his usual treat of a Mars Bar and we went straight back to his home. Both Andy and I were really worried that he was heading for a seizure, but he didn’t and was quite settled, even though he seemed really ‘spaced out’ and he couldn’t seem to make any sense of anything in the world. We got back without incident and he settled down well. I have rung a few times this week, he has been the same really, very unsettled, unsteady, not eating very well. Something is going on with him, he is not well, or he is heading for a big seizure. No-one knows, all we can do is support him as best as we are able, give him paracetamol and ibuprofen in case he is in pain and hope he is ok. Oh I wish we could help you more Jamie.

I hope you are feeling better next Sunday  – my beautiful boy, you don’t deserve to be poorly. So many setbacks and so many difficulties in your life, and yet you try so hard. We all love you Jamie.

On a really, really positive note, Jamie’s cousin, his wonderful cousin has told me he wants to fundraise for Jamie’s home. Mikey, you are one in a million. It will be so exciting and I am looking forward to this – can’t do the cycling myself but I will support you as much as I am able.

Til next time

Jan

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