Tag Archives: EHC

Life Goes On

IMG_0825It’s half term, both children at home. Given their dysfunctional love/hate relationship that’s always stressful, but good news for the dog – one of them at least. Our piggy labrador gets plenty of opportunities to sneak upstairs and eat the cat food. She is masterful, waiting until attention is elsewhere and the doors left open, which sooner or later they always are. Not so good for the cat, who then has to parade up and down in front of me meowing until I notice that her bowl has been licked clean, again.

The kids feel unsafe together, even at fourteen and sixteen, without an adult present. We separate them when possible, or take it in turns to leave the house, but today Tony was working and I was at home. I needed to go to the post office then walk the dogs, and had only been gone about ten minutes when Billy phoned to say that I needed to come home. That they, not the dogs should be my top priority, and he wanted me to take him to get a haircut. He is a long way off being able to walk into town to go to the barbers on his own, and this level of dependence makes him a bit edgy and aggressive towards me. I was in the woods about ten minutes later when Jo phoned. I had to come home straight away because… I forget what exactly but they were squabbling and Billy wouldn’t leave Jo’s room or stop fiddling with her things. Apparently Billy was wearing his only pair of clean jeans, which had a tear in them. He didn’t want to wear them in town, and tried to get Jo to sew them up, while still wearing them. I suggested he change into tracksuit bottoms and I could then mend them quickly  when I got back. This wasn’t acceptable apparently, but I haven’t heard any more about torn jeans so far. Not exactly a relaxing walk. We still approach the house with some trepidation if the children have been home alone – looking out for broken windows, obvious signs of a fight, loud shouts and bangs, or smoke escaping from a door or windows. We had an outbreak of good behaviour when they tried to get me to pay for an Xbox game that they could download onto both their machines. As Jo has very few games that she likes or can play I wasn’t against the idea, but didn’t want it to be a  free gift. I said they needed to do some chores, and they did at least go and tidy their rooms. It’s not exactly doing something for me, but still better than nothing. They continued to phone from Billy’s room to my study on the floor below. Billy was trying to strangle Jo or something. I think they just need the reassurance that I’m still around and within reach as they both have trouble regulating their behaviour.

Billy had taken my letter about having to take responsibility for keeping his bedroom tidy pretty well, and at least made an effort to put dirty clothes in a laundry basket. He had asked for a bigger bin, so I bought a huge orange one meant for horse feed, which he has filled with empty cans and bottles, crisp packets and goodness knows what else. We did have a conversation when he came home on Friday, in which he said that he didn’t want to leave home at eighteen, so I assured him that we weren’t about to throw him out, he just needs to do some growing up. Billy returned to the subject today. The fact that he is nearly seventeen and that before long eighteen will be on the horizon has shaken him a bit. He did say that he didn’t feel mature enough for seventeen, let alone eighteen and the adult world. Billy didn’t come home last weekend. He texted to say he wanted to go to a friend’s house. I tried to get an address and phone number to check up, which was like squeezing blood from a stone. Eventually he said the friend’s dad (the parents are separated) would be away, but that they were both going to the boy’s elder brother. I persisted in asking for a name, number and address, which I was eventually given. I spoke to the brother, who confirmed that he knew Billy, and that there would be no drugs in the house. I looked up the address on google maps, and it was where I had been told it was. I offered to pick Billy up and take him back to college on Sunday – with his weekly supply of tobacco, but he put me off saying he was getting a lift. He did phone from his digs on Sunday afternoon to say that he didn’t have his key and was locked out, and needed tobacco supplies. He was also cold as he only had a T-shirt on. Quite what I was supposed to do about it I wasn’t sure, but I contacted his landlady who was on her way home, and kindly bought the tobacco en route.

It is very unusual for Billy to go two weeks without seeing me, but during last week I had another text telling me that he hadn’t  been at his friend’s house after all, but at Jane’s. This was the first we had heard of her, but either his conscience had pricked him for not telling the truth, or more likely knew he’d be found out sooner or later, and thought it had better come clean. We wouldn’t have objected, with the usual caveats of wanting to know where he was, so not sure why the secrecy. Billy had apparently had a good time, and had been invited to go back over half term, then Jane will come here for a couple of nights. Having extracted a name I did some googling and was pleasantly surprised that they seemed a nice, regular family (which is more than I can say of the last girl we knew about, where we had two very needy kids together). Billy had said Jane’s family fostered, and I take my metaphorical hat off to anyone who does that. Jane’s mum phoned during the week and we had a good chat. I didn’t let on that Billy hadn’t told us that he was with them last weekend, nor that we hadn’t heard of her daughter until a couple of days before. Apparently he was a charming guest, kind and thoughtful. I was torn between thinking they must have got the wrong child and pride, or maybe it was relief, that he could make a good impression when he tried. Perhaps eight years of private education were not totally wasted if there is at least a veneer of social confidence and politeness. I’d like to think that our values have not been totally lost on Billy. He had even told them that his sibling was transgender, although Jane’s mother was confused about which way, unsurprisingly as Billy would have referred to her as ‘he’ and used her former male name. Apparently Jane has an elder brother with a life-limiting condition, and Billy had made a point of talking to him and introducing himself.

Jo in fact is very bored. She hasn’t been to school since 30th January, and can’t decide whether she is going back to her boarding school at all. She did say something about doing chores if she was allowed to stay at home. We are in a limbo, not knowing whether we should be looking for another educational setting or just giving her a chance to regroup. Jo coming out of school coincided with totally running out of money so we haven’t actually paid school fees either. So far the school have been patient on both fronts.  It seems that being told she couldn’t take sex education classes with the girls was a final straw for Jo. Even the thought of school makes her shake, and she had reduced her life to her bed or duvet on the sofa, thus minimising all chance of anxiety-producing situations. She wanted to go to school on Friday to pick up her belongings and say goodbye to a couple of her girl friends. One faithful friend came back with us for a couple of nights. He is quite clingy and misses Jo, finding it difficult to make new friends. She finds this quite difficult as she likes her personal space, but he has been patient and loyal to her, and they play together much of the time on-line. I think Jo realises that if she ignores him altogether she will find herself almost totally isolated. Another reason for going to the school on Friday was a visit from a solicitor specialising in SEN legislation and tribunals. He explained how the new Education Health Care plans that replace the old Statements of Special Educational Need work. It was useful, and if we are going to get Jo back into her current school or perhaps a unit for children with emotional and behavioural difficulties (an EBD school), we will need to go through the application process for an EHC plan. My heart sinks at the thought as it is distressing, depressing, exhausting and very very time consuming and expensive. It shouldn’t be, but it is. I also met the head, who was concerned and obviously wanted to know what was happening. Talking to Tony later, we decided to see if the school will keep her on the books but suspend fees so that we can divert them into paying for a solicitor (notional fees as we haven’t raised the money as yet). We tried three times for a Statement for Jo in the past – or her primary school did on two occasions and we did the last time, and became increasingly cynical about a system which does not work for children by any stretch of the imagination. In retrospect we should never have gone to a tribunal hearing without legal representation, so we won’t make that mistake again.

IMG_1174When I wasn’t trying to walk dogs or manage the children’s anxieties, I was on the phone to the Department of Work and Pensions and filling in forms the length of short novels for Billy’s benefits. There is an enormous amount of duplication in the process as well as people just messing up. They are nice enough when you speak to them but the systems are not adequate to the task, which creates a huge amount of work for claimants. How Billy is seriously expected at sixteen to manage claiming on his own behalf I can’t imagine. Here I am with a PhD and it takes all my time and energy, telephone skills and perseverance. Given that the benefits are because he has learning difficulties, as do many who apply I imagine, the set-up is impossibly complicated. To relax I have signed up for Desmond and Mpho Tutu’s 30 day forgiveness challenge. I could watch the opening video, which only lasts a few seconds, with Desmond and Mpho laughing together on its own. It is a great de-stressant, with Desmond’s lovely infectious laugh. I can feel my stomach unknotting just thinking about it!

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Falling apart or falling into place?

When you are in the middle of a situation it is hard to know which of these two realities one is living. Are things falling apart or falling into place? I guess it always feels as if unplanned changes represent things falling apart, even if experience tells one that such times can be creative. They generate change. Jo is like a chrysalis tucked up in her duvet, waiting to emerge as a butterfly. I suspect that this could be a long and painful process, and unlike the caterpillchrysalis to butterflyar who can just wait until the sun comes out in the Spring, Jo will actually have to find the resources to be proactive at some point. The crux of it is that she won’t return to school. It has been an increasing struggle this year, not that it was ever easy getting her there. She has now missed so much of her GCSE work that she has little chance of catching up, which is another disincentive to return. The main problem is a developing social phobia, not wanting to be looked at. Unfortunately our lovely daughter will only continue to become more biologically male, unless and until she can get her head around attending the University College Hospital endocrine clinic and going on hormone blockers. The problem is therefore not going to disappear with the Spring sunshine.

We tried and failed three times to get a Statement of Educational Needs for Jo, so will now need to start again with the new Education, Health and Care needs assessment process. In theory it is more holistic and will look at social and emotional factors, as well has Jo’s base- line cognitive ability. The SEN Statement process was also supposed to take broader needs into account, but in practice these were summarily dismissed. Jo might find the courage to carry on with her education in a much smaller residential setting, with therapeutic support available and a better understanding from all those involved of her complex mix of needs, her strengths and weaknesses. If she was in a wheelchair or was on the autistic spectrum I suspect her needs would be better identified and catered for, although I know that it is increasingly hard for all children and young people with any disability or mental health issue to get support and to find a place in society. The transgender process is just another part of Jo’s complicated but no doubt wonderful jigsaw. I can’t wait to see the finished picture (in this life or from the next!). We were planning a meeting at the school, with social work support and the Virtual School involved, but there seems little point if Jo doesn’t return there. It is hard to know how to plan or move ahead. It is also painful scraping around trying to find school fees on a month-by-month basis, with repairs and other things jobs on permanent hold, when the child is actually at home in bed.

Lone hero parent

I attended a retreat/conference in Italy and was, most unusually, away for four nights, leaving Tony to cope with both children alone at the weekend. This is not something we aim to do if we can help it. Billy arrived back from college with a friend. The friend had been before when they camped in the woods next to the house. I gather that all three children had some fun playing with B B guns (not something I like as they shoot hard plastic pellets, which I’m always afraid the chickens or other animals could eat). Jo was included, and from the range of pellets around the house and garden they obviously had a wide-ranging battle as well as some target practice. They also seem to have consumed plenty of fish and chips as the food left in the fridge was largely untouched and the debris extensive. Unfortunately, as so often happens, things took a turn for the worse on Sunday. Tony suspects that Billy was smoking cannabis, or something else that he shouldn’t, which makes him extremely aggressive. Apparently he physically attacked Jo in her room, and threw food or drink all over the wall by her bed (the evidence of which will remain until we can redecorate the room at some time in the future). Billy was extremely rude and verbally aggressive to Tony, who managed not to react – much to his friend’s embarrassment. I suspect that Billy’s friends, who all seem a nice lot, are just not used to seeing or hearing someone be so aggressive and rude within an apparently civilised family setting.  Billy is not going to find it easy to keep friends, or be welcome in other people’s homes, if he can’t get on top of this behaviour. I had several requests for money while away, and as usual the money for his train fare seems to have been diverted, presumably for drugs. This is another situation in which it is hard to know how to react.

imagesOne decision I did make was not to clean and tidy Billy’s room. I went up on Monday morning intending to do it, but partly through exhaustion, partly annoyance, but also I hope some wisdom, decided that apart from taking a plate and fork down to the kitchen I would leave it as it was. My hope is that if I stop doing things for Billy he will begin to do them for himself. He won’t always have me around to tidy up after him. If I don’t do things for Billy he generally gets very cross with me and sees it as a lack of love and care, which makes him feel very vulnerable. Maybe at some point he will allow me to help him do the clearing for himself. If he felt that he had more control over his environment without relying on others he might be happier. A friend told me that one of the effects of dyspraxia is difficulty not just sequencing, but also generating the action words needed to perform tasks. This makes sense to me as I am aware of telling myself to do jobs one at a time in order to get them done (‘ignore the food and cans and pick up the clothes’, now take aftershave, razors, deodorants etc. back to the bathroom’, ‘get a bag and collect all the tin cans’ and so on). If I need to do this to accomplish a task, I do understand how Billy finds it difficult to even get to the stage of seeing the individual tasks within the whole chaos of his room. What I don’t really understand is why he needs to trash the room so comprehensively within such a short time. One little obsession is removing all his many caps from his cupboard, and hooks on the back of doors, and scatter them over the room, so one of the tasks I usually perform is ‘now find, pick up and put away all the baseball caps’. I have asked him why he does it but he doesn’t have an explanation for this behaviour, other than it is a habit. It sometimes feels as if adoptive parents need to be professional psychologists, rather than just overworked, underpaid, and very tired housekeepers, cooks and drivers.