We are in mourning. We have lost the son we had and have no idea if and when he will re-emerge. Like the prodigal son he evidently needs to experience life on his own terms, but is very poor at recognising risk factors and calculating how far he can go. Billy seems to think that giving a false name to the police will somehow keep him out of trouble. We felt obliged to tell his girlfriend’s father that he was threatening physical violence towards her for going out with another lad, and calling off the party he was organising. It does feel like a bereavement process.
Jo, on the other hand, flourished over Christmas without Billy around to put her down all the time. She misses him, or the old Billy at his best, and called him ‘The Grinch’ after the Dr Seuss character who ‘stole Christmas’ but actually blossomed. We stayed over night on 25th December with Tony’s sister and family as we usually do, but for the first time ever Jo sat with us at table throughout the meal, chatted, made jokes (more or less appropriate) and socialised. She behaved well, didn’t get over-excited, went to bed at a reasonable time and didn’t break or nick anything. (Objects do still tend to just turn up in her pockets, and she claims to have no memory as to how they got there).
Jo has now been out of school for over a year – with no immediate prospect of return. We went through the motions of trying to get her to attend our local secondary school, and after a great deal of effort she had a short tour of the school after hours when it was more or less empty. She remarked that a single year group is bigger than the entire intake of her previous school, and that she couldn’t learn in that environment. She is right on both counts. We had a second very unsatisfactory multi-agency meeting at which I understood that the EHCP coordinator would take the evidence that Jo couldn’t access this ordinary mainstream secondary school back to panel, with the agreement of all those present. The outcome, however, was that she is to be put on the school roll from 4th January, and that transitional arrangements, in the form of on-line education, will be put in place (or apparently have been). On paper the education authority will argue that they have met their obligations to provide an education for Jo. The fact that it has been tried and failed, is unsuitable, and inaccessible, is being totally ignored. We are threatened with prosecution if we can’t make it work. Well we know that we can’t, so presumably 2016 will see us in court. We are also faced with simply enormous legal fees if we want to proceed to challenge the LA decision at tribunal. I try hard not to demonise those involved, but simply can’t understand how decent people can lie, dissemble, and basically trample over the lives of others in this way.
A big step forward was Jo starting on hormone blockers in September. She has to have an injection every 28 days to reduce testosterone levels with the view of arresting puberty. She suffers all the symptoms of the menopause, and feels pretty lousy much of the time, but has seen some changes in things like speed of facial hair growth, which increases her confidence. Most of her life is lived online, waiting for former school friends to Skype or exchange Instagram or Facebook photos and messages. She also met up with a small group of them near one of their homes – unfortunately not near ours – a couple of hours away by train. Tony nobly went with her on the train and spent the day hanging around shops and cafes. She failed to make the return rendezvous and didn’t respond to phone calls or messages. After some three way conversations with me and her friend she was tracked down to the friend’s home, apparently without a charge on her phone and no idea of the time. Tony and Jo did eventually meet up and made it home late that evening. As Jo only leaves the house to go to Tesco about once every two or three weeks, to actually go on the train and meet other kids was a big event for her. It is so sad to see her at home, bored out of her mind, day after day, as well as very restricting for me. She has at least made friends with the cat, who she refers to as ‘hairy baby’.