It’s taken me a while to write this post, I don’t know why. Especially when Jamie was so good during his Sunday outing. He was dressed and ready when we arrived at his home and gave the most beautiful smile when he saw us. The temperature was about 24 C already but he still insists on wearing his winter coat and backpack – they are security for him and have to be worn whatever the weather. In winter he won’t wear anything warmer than a T- shirt – that is what he always wears and he just cannot change it. This started when he was about 7 or 8 years old, when he realised he could make choices, and he has never managed to change his routine. It’s not for want of trying by everone around him!!
He had a wonderful day and was really, really settled and happy. This was quite strange in itself because he had been unsettled in the morning before we arrived. Does Jamie worry that we won’t come – we had to miss seeing him the week before because of his seizure. Does he know it is Sunday and the day Mum and Andy comne to see him? When he was younger and at school, there was one occasion when we had to go visit him on a Saturday instead of Sunday. I told the staff we would be there at about 1.30 pm. Come Saturday, the staff had forgotten – understandable – we always went on Sunday. Jamie though, at 1.30 went and asked to get his coat and bag and was ready for when we arrived – he never normally does this and has never done it since. Did he know? Does he know far more about time, days, weeks, years than we realise? It fascinates me what goes on in his head.
Anway, we had a really good time. As usual I did not want to leave him, but I upset Jamie if I stay in his flat after we have got back. He sometimes pushes us out of the door. It is his space and we don’t really belong there. Sometimes I just want to be with him, to bath him, play with him. He doesn’t want any of these things, and rightly so really. He is a young man and needs to make his own way in life. I am here to watch over him, to ensure he is looked after properly and that he has the best quality of life. Andy is here to protect him, fight his battles for him that he cannot possibly do, and be his ‘best-mate’!! His sister is his special person – who he reacts with in a totally different way. He loves to see her when she visits.
Having left this post until now I am able to write that unfortunately Jamie had another seizure yesterday, the second one in under 2 weeks. He doesn’t seem to be having clusters anymore, i.e. 3 in one day, but they are more frequent. His medication is constantly reviewed and we are trying so hard to find the right one for him at the right dose. No success at the moment though! It is Jamie’s review soon and we will ceratinly be discussing these issues a lot.
Jamie has recovered today and is feeling much better having done a massive poo on the toilet. At last he is learning to use the toilet to defecate and not do it in bed and them smear it everywhere. This is a constant problem with people who have the problems Jamie has – apart from the mess, it leads to infections. Jamie used to have a constant ear infection because he poked his dirty fingers in his ears. However hard we tried to keep them clean he was anal poking so much it was nigh on impossible. How to you tell someone not to do something when they don’t respond? Did he understand? I don’t know, but we got there eventually – he doesn’t do it so much anymore, his hands are cleaner – he hasn’t had an ear infection for years. Success!!
I am so looking forward to seeing my beloved boy tomorrow.