I haven’t written about ‘Jamie’s Sundays’ for a while, well since a while before Christmas. I was all set to write another post, but Jamie had yet another day of seizures in fact it was worse because he started on a Wednesday evening and then carried on with 3 on Thursday. I didn’t know but his first seizure was very different to normal – he usually has a lot of body jerks and leg shakes, but in this one he was totally still, as if unconscious. He had also stopped breathing! Thank goodness for the vigilance and quick actions of his support staff, they turned him and banged his back and, thank goodness, he started to breath again. The 3 seizures the next day left him shaky and unsteady but he recovered well .Since that awful time, Jamie’s seizure pattern seems to have returned to normal – 3 seizures a day every 3 or so weeks. It’s not nice for anyone to cope with, but when you can’t tell people how you feel it must be awful. I know how I feel when I get the dreaded phone call. I want to be with my beloved son, but I can’t because he needs to sleep and recover.
But today, we have had a brilliant time. Jamie had 3 seizures last Sunday so we couldn’t see him, but he certainly made up for it today. He smiled his beautiful enigmatic smile when we went to his flat and the staff said what a great time he was having and how happy he was. When Jamie is happy it makes me so happy! We went to the pub as usual. It was really busy and there was a family with 2 young children who were pretty noisy. Oh no, I thought, this is going to be a disaster, Jamie will get upset, not be able to cope and we’ll have to escort him out screaming and headbanging. How wrong was I!! Jamie was so so good, he ate his lunch beautifully, he didn’t headbang once and he was pretty relaxed considering the noise. And then a man came to sit at the table next to ours. Oh no, thought I, double trouble. But Jamie coped fine, he was as good as he could possibly be, apart from a really loud burp, which had me in hysterics!
So we left, without a single mishap or upset and I was so proud of Jamie. On the way to the sweetshop Andy told him what a good, good boy he was and he would have wagged his tail if he had one, he was so pleased with himself, it was lovely. We got him his usual sweets and then Jamie actually took a Mars bar from the shelf (Andy said he could he wasn’t just taking it). Now normally Jamie will never ever choose what he wants for himself, a choice is made only when prompted by me or Andy taking something and giving it to him. If he wants it he takes it, if not it gets pushed away. I was absolutely speechless, he has never been able to make a choice like that let alone take something for himself. Later Andy told me the Mars bar had fallen into the wrong place. Now in Jamie’s world, everything has to be in the right place and Andy thinks he took the Mars bar to put it back, but then once he had touched it he could have it. Whatever the reason, it could be a break through in helping Jamie to develop choices.
It was a lovely day, I love to see my beautiful son so happy and enjoy himself so much. The week before he had his last seizures, Sophie (Jamie’s sister) and Owen (her fiance) came to see him with us and he was really good then as well – and that was even more remarkable because he was building up to his seizures and this is normally such a difficult time for him, he must feel awful in the time leading up to a seizure and his behaviour deteriorates significantly.
In the car on the way home, Andy and I always discuss our day with Jamie. Today was no exception, it was lovely to have such lovely, happy thoughts about our day. As Andy says, these days are to be treasured and we will remember them then our days out with Jamie are not so positive. We talked today about how Jamie defies so many of the myths surrounding autism. Eye contact for example – Jamie exhibits significant lack of eye contact with almost everyone, including me! But with Andy, and Sophie quite often, his eye contact is remarkable – he spontaneously looks up at Any all the time through lunch (they sit opposite each other). Andy, who reads Jamie so well, says it is like he is asking ‘Am I doing this ok? Is this right? ‘. It is just so wonderful to watch. Jamie looks at Andy when Andy is not even looking at him, as well as actually making contact with each other. He also has an amazing theory of mind – Simon Baron Cohen’s famous theory that people with autism do not understand that other people have thoughts and beliefs that are different from their own. But Jamie , in his own way, does understand that people are different from him, he sometimes plays jokes on Andy – he know that Andy will find it funny. My thinking on this – I think Jamie does not understand why people don’t understand him, why don’t we know what he is saying when he babbles? Think this is my Phd topic!!
Anyway, I feel so happy for Jamie that he is settled and happy. Long may it last.
Thanks for reading.