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It’s almost a month since I last wrote. Jamie has been quite amazing, even though he suffered badly from a day of seiures, which meant we had to miss our Sunday visit. The seizures were on a Saturday, three of them, starting at the usual time, while Jamie was doing his bath routine. The first one lasted 2 minutes 40 seconds, then Jamie was helped to his bed to sleep. When he woke up, he went straight into another seizure, lasting over 4 minutes. Poor boy, then sleep again and when he woke up the last seizure, which lasted 3 minutes. It is a long time to have a seizure when your breathing is disrupted. Jamie’s last seizure was about 9 pm and Andy and I made the decision not to go to see him on the following day. We felt he would be quite disorientated and spaced out and would be much better having a very quiet day chilling out in his flat. It is always difficult to make these decisions and I do hate not seeing him. But I also think he understands why we don’t go sometimes – he seems to accept it anyway.

Our visit last Sunday was really interesting – and very positive. Jamie was really good, in a very happy mood and obviously looking forward to going out with us. We went to the pub as usual. The kind staff there had reserved us a table near the Christmas tree. Jamie likes it because of the lights and shiny decorations. The staff really do their utmost to help us and make Jamie’s day a good one, they are truly amazing. The previous time we went, our usual tables were all occupied – we were just choosing another when the couple at the ‘Christmas tree table’, who are also Sunday morning regulars (they come in for coffee) asked us to take their table and they would move. They have done this before, but I always think how kind these people are. My mind always compares them to those people who are the opposite – who make rude comments and remove themselves as far as possible from us. It is interesting how different people are.

We sat down, and Jamie was really enjoying his lunch when a family came in with small kids and sat down fairly close to us. Oh no, I thought, this might be a real problem. Sure enough the kids were young and noisy – a couple of toddlers and a younger child in a highchair. Jamie was looking at them out of the corners of his eyes, as he does when he doesn’t want anyone to know he is watching. I could he him becoming more and more anxious. Then suddenly he erupted into headbanging and screaming. The child who had been quite noisy started crying really loudly, adding to Jamie’s distress. Oh no, here we go I thought. Andy and I will have to drag Jamie out and he’ll miss his lunch and be upset, my heart sank. I said to Andy, we’ll have to go, but he came and sat in my chair – I had stood up by then and we quietly tried to calm him down. Then I remember thinking, I’m not going to take Jamie out, take him from his lunch – that is like a punishment and he’s done nothing wrong, except be autistic! Anyway, he calmed down  – I must have known this time it was different. He actually stopped himself from headbanging and was able to sit quietly and finish his lunch. Now I had put myself between him and the family with the noisy (by this time really screaming) kids. Perhaps he was able to control himself because he couldn’t see them and knew I was protecting him. I don’t know, all I know is that it worked. I stayed standing by his side for a while and then sat down again. Lunch was finished without any other trouble.

This was the first time Jamie has ever managed to pull himself back from a major meltdown. However uncomfortable it is for other people – this is a fact of life – it is a fact or our lives. Jamie doesn’t have a massive bump on his forehead for any other reason than the fact that he hits his head. It’s horrible but you cannot ignore it. It was interesting though because he wants Andy to react to him. When he headbangs and is angry, he tries to grab Andy  – it is Andy he wants. There is something there in their relationship that I don’t understand yet, maybe never will, but it is interesting. Why does he want interaction with Andy when other people  (including me at times) are pushed away, sometimes quite strongly? I wish i knew what was in his head.

Of course Jamie was told what a brilliant boy he had been – he had his treats as normal. If we had had to take him out of the pub, however harsh it may seem, he would not get his treats. This is the only way we can change Jamie’s behaviour and help him lead a more normal life. Anyway, he really really did know that he had been very good and was oh so obviously pleased with himself. It made me smile so much.

We have begun extending our time with Jamie again, so after lunch we go for a little drive in the car  – always the same way at the moment. we stop and Andy goes to look at the tropical/marine fish shop (his passion) and Jamie and I people watch – he loves it. But we have stopped the headbanging in the car, so are able to just push the boundaries a little bit. If the headbanging comes back we will think again. It’s a juggle, always trying to stay ahead of the game! Sometimes we win, sometimes we lose, but if we are helping Jamie to have a better life, it is so worth it!!

I saw my dear friend Noriko Ogawa this week – she gave me a lovely photo from Jamie’s concerts in Japan – here is a link if you want to have a look at her work. She is truly amazing.


Thanks for reading xx

We all love you Jamie!

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