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It is amazing how quickly Sundays come around and it’s time for our visit with Jamie. I so look forward to Sundays – I don’t feel complete without Jamie and Sophie, it always feels like something is missing when they are not around.

2 Sundays ago, we thought we were going to have a difficult time. When we arrived Jamie had obviously been upset that morning. His bump on his forehead where he hits it was red and sore. I though ‘oh no, Jamie looks like he is heading for a seizure’. Apparently he had been awake until about 4.30 am and was very anxious and unsettled.

I could see in his face how anxious he was, it seemed as if he didn’t want us there with him. In fact after a couple of minutes he got up from his table where he had been colouring and tearing his paper and went into his bedroom and promptly stripped off all his clothes. Oh no, I thought, he is going to get really upset and stressed. It was very funny, for the first time I ever remember he did not want Andy with him – he got pushed out of his flat . I sat on Jamie’s bed, by his side, and tried to keep him relaxed and calm. He was ok and we did not have the usual escalation into headbanging and hand-biting. In fact he even smiled and vocalised, suddenly he relaxed and started to put his clothes on. Thank goodness, I thought, he is ok after all.

Jamie put his clothes on really well, except his T-short (with long sleeves!!) went on back to front. I know Jamie noticed it, but he seemed unable to do anything about it – so I said to him ’round and round Jamie’. He knows this means his clothes are on back to front, but he still seemed unable to do anything to change the situation. He stood in front of his carer, who was an absolute saint. His carer stood there with his arms outstretched to Jamie and the palms of his hands upwards. And he stood and waited…………. and waited……………………………..and waited………………………….It was an age that we waited, and I spoilt it by trying to hurry him, so he started headbanging but it was just a very short outburst and then he stopped and turned his shirt round the right way. Jamie’s carer was brilliant, so patient and so caring for his welfare.

After that Jamie was happy to go for his lunch and although he seemed really spaced out he was so good. Sometimes he seemed unsteady on his feet too, as we returned to his home. I have no idea what was wrong with him, but we did expect a seizure was imminent. How wrong we were – when I rang in the week, Jamie was having a brilliant time, he was happy and relaxed and enjoying his outings. I was so pleased, especially because there had been a big incident in MacDonalds, where he was obviously anxious, didn’t want to get out of the car, When he did he rushed in and just wanted to grab all the paper. Then he got really upset and had to be taken out before he stripped his clothes off. I am convinced that MacDonalds is too noisy, filled with people (especially kids) and just too busy for him to cope with, so they staff are going to try taking him to a quieter one – watch this space!

Why Jamie was so unsettled that weekend I don’t know – perhaps he had a funny little seizure in the night or something. If only he could tell us how he is feeling and what he wants, his life would be so different.

So the next Sunday came along (last Sunday). Jamie was again quite unsettled when we arrived. The carer had not managed to bath him, he wouldn’t let her shave him properly, or wash his hair. You’ve probably guessed that she is new – Jamie knows exactly how to get round new members of staff, he is very clever!! Anyway, it took a while but he eventually decided he wanted to come out with us. He didn’t get upset or take his clothes off which was great, but he was playing with his paper and he couldn’t leave until it was finished.

We had a wonderful time with him at lunch, his behaviour was impeccable, he really enjoyed himself and we even managed to go somewhere that we used to go to before he started finding everything so difficult. I was really impressed with him and so proud. What a wonderful time we had!! When we got back Jamie was very happy and busy talking to Andy in ‘Jamie speak’. I’m sure he thinks we should be able to understand what he is saying!!

Sometimes I really miss you Jamie, I wish I could hug you, but you hate me doing that, I wish I could make you happy always, you are a grown man now but  I wish I could bath you, watch videos with you, watch you go to sleep. You are so precious to me. Always in my thoughts …..

 

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