My last post was about Billy, so now it’s Jo’s turn. Here we have seen progress. After months and years and tens of thousands of pounds in legal fees and specialist reports, Jo was offered a local authority funded place at a Priory specialist 16-25 residential college for young people with Aspergers and similar social disabilities. As there are no specialist colleges for FASD its a best fit. To our amazement Jo managed to go to a trial few days in the summer and made friends, which made the September transition easier. She also did a few days summer work experience in the pottery of a local Camp Hill community craft centre which also gave her confidence. While we can’t say she is happy, she is a professional moaner, the change from being stuck in her room with only online relationships to her current situation is huge. The academic programme has not really got off the ground – she hangs around outside the class apparently too stressed to take part, but wants to be around people and have company. College for Jo is about social relationships, particularly boy friends, and given that her peer group are mostly on the autistic spectrum and socialisation isn’t their strong point, she has done well. It is an enormous advantage that the college have a 24 hour waking staff, so if she is awake at night she can and does go and talk to someone, reducing the likelihood of self harming. We just hope that the local authority will consider her progress sufficient to continue funding – any excuse to cut it will be so tempting to them. There is an annual review next month and rather ominously we had a letter from the LA saying that they had changed her Education Health Care Plan as a result of the review reports received from the college. To have Jo back home in her room at this stage would be heartbreaking.
Category Archives: Education
Catching up
It is almost a year since I last blogged and the truth is that life became too difficult and painful and my qualms about protecting the privacy of the individuals involved overcame my desire to write. I have realised that life will not necessarily get easier and the challenges increase rather than diminish as the children get older, so here is a brief summary.
Billy struggled in ‘supported’ housing, which was pretty dreadful. He stopped pretending to engage with any sort of education and sunk to the bottom in terms of behaviour and attitude, although still wanted to spend time, as much time as possible, at home. He seems to have spent most of his time playing on his Xbox with other lads, hanging round the streets at night, sleeping during the day, smoking, some drinking, probably getting a fair quantity of cannabis. He certainly had too much money which encouraged his life style, and the charity running the place were making a good profit from his housing benefit. Billy was asked to leave when seen on CCTV letting friend who had been banned from the property in at a window. The state of his room was a continual source of tension with staff. He would occasionally be given warnings to clean up but not actually helped to do so. Just telling him has never had any effect. He never mastered the laundry system, any more than he did at boarding school. He was always well turned out as he either bought new T-Shirts rather than retrieve dirty ones or brought his stuff home for me to wash. The main problem however was his girlfriend, not in herself, we were very fond of her, but their relationship was toxic. She was also in supported housing and as mixed up as Billy, but without the same level of family support. They started going out in January 2016, and from the start the relationship seemed very volatile. Billy could be verbally cutting and tried to push her away emotionally and using language, but the more he did so, the more she clung to and pleaded with him to keep her. As Billy became emotionally closer to her, and often thoughtful and caring, he also became increasingly possessive and controlling. We tried several times to suggest to her that she should leave him but to no avail.
Things came to a head in May/June – we managed to find a rented flat for Billy as he was once again homeless, and his girlfriend immediately quit her accommodation and persuaded us, against our better judgement, to let her move in with him (not that we could have monitored them at a distance, and they were over 18). A few weeks later, with another homeless friend permanently lodged on a sofa bed in the front room, and Jo staying for the weekend, Billy assaulted her. I went to collect Jo on Sunday morning and saw that the girlfriend was covered in bruises. I could go into detail of what followed and the next few months but won’t as it is unnecessary and distressing. The whole thing was somewhat predictable and we had tried hard to get appointments for Billy with CAMHS and an NHS psychiatrist. When we finally managed after a great deal of persistence from us and his GP, both services dismissed him, despite the fact that he was clearly distressed, disregulated, hearing voices that ‘told him to do stuff’, suffering lapses of memory, increasingly violent and frightened… CAMHS told him to contact ‘Teens in Crisis’ which he tried to do, but without success. The psychiatrist said after a brief interview that he was not schizophrenic, although noting that we thought he had signs of personality disorder, and discharged him. The girlfriend meanwhile was finally persuaded by her family to press charges of assault – and added rape for good measure, but didn’t understand that she couldn’t do that and still go out with Billy at the same time. She was actually in our house for the weekend when the police and her hysterical mother turned up to arrest Billy some weeks later. Since then she has alternated between wanting to be with him and wanting to destroy him. Billy was kept in custody overnight and released on police bail. Nearly eight months later the case is still waiting to go to the CPS. The (ex) girlfriend has made it her business to stalk Billy online, as well as by direct contacts, and ensured that anyone else he might go out with or befriend knows his past. This meant that Billy was unable to take up the college place he had intended in September and moved to another town to do a similar course, only to be ‘chased’ from there after a few weeks. He has now made a third move to still try to catch up with his Level 2 qualifications, but finding accommodation has proved extremely difficult. He evidently still loves her but accepts that for the moment at least they can’t be together. Her feelings seem as ambivalent as ever, and we can only assume that she is suffering from shock and trauma from the whole experience.
Meanwhile we attended the magistrates court last week where Billy was answering charges going back to 2014/15 for inappropriate Internet use. It took the police nearly two years to present the case to the Crown Prosecution Service who, much to the surprise of Billy’s solicitor, decided to prosecute. It is hard to see how it is in the public interest, but that is where we are. The solicitors did suggest that the delay had more to do with waiting until Billy was 18 (he was 14 and 15, and out of school when the offences occurred) and could be treated as an adult, rather than the merits or otherwise of the case itself. We are now at the stage of assembling medical and other evidence that can be used in Billy’s defence. He is convinced he is going to get a custodial sentence, which he may, and is suffering frequent crippling stress migraines. He had the unpleasant experience of having to disclose the details to his current college. We can only hope that he has learnt something about what you do in secret coming to the light eventually, and are glad that he was caught and stopped when he was. The one positive note is that with the help of the Adoption Support Fund Billy is getting around 25 hours of therapy from a charity. It probably helps him cope day-to-day but does not get to the roots of attachment, abandonment and sensory issues that lie behind much of his behaviour. What is frustrating is that he has been explicitly barred from receiving any treatment for inappropriate sexual behaviour as the case was still open.
The most interesting and effective treatment Billy has had so far is from a small group of
healers who broadly adopt the approach outlined by Tom Zinser in his book Soul-Centered Healing. Billy has seen one practitioner face-to-face on two occasions, and other work was done on his behalf remotely. The idea that he has sub-personalities, probably created at
points of trauma in his past, or possibly even past lives, makes sense to me. His personality changes and lack of awareness of what he does in different moods or persona is very apparent to anyone who witnesses them. I took an odd little drawing of a ghost-like figure along to one meeting of healers said that Billy had denied drawing it, but that it looked like his style. The therapists present said with one voice ‘he didn’t’, which I later realised meant that he didn’t do it consciously in his ‘Billy’ personality, but in some sub-ego state which he could not remember. Therapy consists in helping Billy connect to his ‘Higher Self’, as well as removing any unwanted negative energies. Although subtle these sessions have generally been marked by step changes and improvements in attitude. Billy has stopped saying that he is fine as he is and doesn’t need any treatment, and realises that he needs help. He spent a lot of time using a Ouija board and summoning negative entities (and producing some quite dramatic psychokinetic effects such as lights blowing, raps, knocks, mould growing on walls, orbs flying across the room etc.). This had been a ‘game’ since boarding school days that he had become hooked on much like the cannabis. One of the unwanted visitors was ‘Zozo’, well known to the young generally I discovered. Billy’s drawings of Zozo were a cross between a devil and himself – perhaps another sub-personality? Anyway, Billy insisted that he could handle Zozo and other negative entities, and the soul-centred mediumistic healing seems to have both removed any hangers-on and improved Billy’s mental state considerably. It hardly needs saying that such treatments are regarded as highly questionable by many people and we wouldn’t mention them to mainstream psychologists or other medical practitioners. My only interest is in helping Billy, and if it works, it works.
Taking responsibility for his actions and as far as possible leading a more regulated and fruitful life are also essential parts of the healing process. To this end we are continuing to support Billy to stay at college for as long as possible, although he frequently talks of giving up. He clearly has talent for music technology and has started a Soundcloud channel with some of his rap recordings. They are quite raw and honest, in true rap style, and are the best way to find out what’s going on in his life. While we many not like the language, it is at least creative and cathartic. His birth mother is also a fan and posts his latest songs on her Facebook page. One of the most moving was about his need of and love for her.
So why take so long to write any of this? Apart from the privacy issue there is a sense that the adoption community really don’t want to hear too much negativity, which is understandable. We know from friends, however, that we are not unusual in having an adopted teenager in contact with the criminal justice system, struggling with education despite being bright, self-harming through substance misuse and sex, and becoming increasingly violent or anti-social. The support just isn’t there. Tony and I benefitted from therapy but the targeted, specialist help Billy needed and needs has yet to materialise. Maybe it will remain mum at the end of her tether waiting for his brain to develop and gain more self-control. That could be the sum of it.
Retrospective 2
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’.

To Be…
I haven’t written for some time – to busy and exhausted. One of the things taking up my time has been trying to persuade the Local Education Authority that Jo does have special needs and requires an Education Health Care Plan (ECHP) and fully-funded residential school placement. She was turned down for an assessment, but after several weeks of counter moves, the LEA have changed their minds, and we are back at the gathering documentation stage – again. As I had a quick cup of coffee and salad in town today I jotted down the following:
- To be born Hep.C + to an alcoholic mother with a heroine addiction;
- To suffer pre-natal brain damage;
- To be taken into care at three days old, and moved from a loving foster family to a new setting at 11 months;
- To attach oneself to, and crave the attention and approval of a brother who wants to destroy you, who will undermine you at every opportunity;
- To be bright and creative, but drop out of three mainstream schools unable to cope;
- To feel for as long as you can remember that you are in a wrongly gendered body, and hate yourself and the world for failing to recognise that you are really a girl;
- To want to socialise but be rejected by most of your oldest friends;
- To be sidelined by your birth siblings, who mean so much to you;
- To be depressed and stressed and isolated at home;
- To have no clear or realistic idea of the future and what it might hold;
- To feel that the world is against you and hide away from it;
- To struggle to make decisions and regret each failure to move forwards;
- To have so much to give the world but have no opportunity to express it…
Yes, I have special needs.
No, I am not fulfilling my potential.
Light and Shade
I haven’t written anything for a while – too exhausted and unsure what to say. Jo is still at home but thinking seriously about going back to school tomorrow. It is a friend’s birthday, and she evidently feels that she is missing out on a good deal of social life. She can get quite disturbed at home and is very isolated. A couple of days ago Jo left empty sheet of paracetamol tablets ostentatiously on the kitchen table. I had no idea whether Jo had taken one for a headache, or the whole packet. We assumed that a serious suicide attempt would be more secretive, and she has long had a habit of self-medicating, as well as of threatening to kill herself, so I’m afraid we didn’t take all that much notice. I did mention this incident to the art therapist who came this morning, and he said he would have to report it. I also mentioned it to the woman from the LEA who phoned up to do a social assessment for Jo as part of the EHCP. She too was very concerned – although I assured her that Jo’s CAMHS counsellor was aware of her self-harming and state of mind. CAMHS can’t do much about it if Jo won’t engage with the service – I went on my own to her last appointment, as Jo wouldn’t leave the house. Jo wouldn’t engage with therapy at home either, barricading herself in her room when a lovely young woman came to do some drama with her. Jo has always engaged in risky behaviours, and our attitude since she was small was to ask ‘Is it life-threatening’? If the answer was ‘Probably not’ we would let her get on with whatever it was she was doing as supervising her was such extraordinarily hard work.
We had a good family day out visiting relatives a couple of weeks ago. The children are normally reluctant to join in our annual get-together and there have been occasions in previous years when having got them there they refused to get out of the car. Billy was the worst offender, but Jo would keep him company. This time his girlfriend Jane was invited along, which made all the difference. Billy behaved well in front of Jane, and Jane included Jo, making friends with her. Sunday morning we were discussing the success of the previous day when three CID officers turned up at the house. At first Billy assumed that they had come to take Jo back to school, and told her as much. They were in plain clothes and an unmarked car, but unmistakably the police rather than Jehovah’s Witnesses (we had them today and they are always in twos rather than threes). To cut a long story short, Billy is in trouble over an incident that happened about fifteen months ago. The police had traced his address through his mobile phone number, which he had exchanged with someone else involved. They had a search warrant and took away Billy’s laptop and phone. He was shaken, as we all were, but resigned. He also had to tell Jane at least some of what it was about as she was in the house at the time and he could hardly conceal that he was in trouble. Billy’s biggest worry seemed to be the effect on Jane and their relationship. The police also made it clear that if he didn’t present himself at a police station for interview they would issue warrant for his arrest.
I had two days to try to find a suitable criminal solicitor, and last Tuesday evening Tony came from work and I picked him and Billy up, and we made our way to the police station where we met the solicitor. She didn’t think that it would be in the public interest to prosecute, but the investigations will take some time and he has evidently been engaged in risky, and often criminal, behaviour for some time. Although we were all in a state of shock, there was also a sense of relief that things were coming to the surface, especially as Billy is still a minor (under 18) and there is an opportunity to address the underlying issues when the legal process has run its course. Prosecution is a real possibility, especially if the police find more incriminating evidence on Billy’s laptop, which they hadn’t had time to go through at that point. Billy did a good job of explaining himself but it was far from evident to us that he understood what he had done, or why it was wrong. He clearly knew that he was in trouble, but seems to live in a world with different values. So far at least Jane and her family have stood by Billy – he was at their house last weekend. Its hard to know quite what she sees in him, although he can undoubtedly be kind and caring, and they seem very much in love. We will make the most of enjoying the positive influence Jane seems to have on him while it lasts.
On Thursday as well as attending Jo’s CAMHS appointment without her, I bought a cheap laptop for Billy so that he can do his college work, and Nokia pay-as-you-go phone so that we can contact him, and he can stay in touch with his friends and tutor. I also had to go to the Job Centre with his birth certificate, which the DWP needed for some reason. They haven’t paid Billy’s benefits this month or last, which makes it hard to pay his rent, but I haven’t had the time and energy to find out what’s going on as yet. As I walked through the front door I could see that all was not well. Although our house is messy and too full of stuff, most of the stuff seemed to be on the floor, along with smashed remote controls and debris. The first thing I saw entering the drawing room was damage to the plasterwork – and I later found a smashed up chicken coup on the decking. I was pretty annoyed, having spent another day running round after the kids while they smashed the place up. Billy had retreated to his room and Jo had calmed down by then. He knows exactly how to push Jo’s buttons by being incredibly rude to her, and she reacts but damaging things to deflect her aggression away from Billy. After the smashing episode she asked him how he would feel if Jane could see him, which touched a very raw nerve. He was sobbing but looked murderous. Tony remonstrated with Billy, who wanted us to simply blame Jo for the damage (and to call the police). His stated ambition has always been to make her so naughty that we get rid of her. He wasn’t in a mood to listen to Tony, but hopefully got the message that provoking Jo to get a result is just not on. It is a pattern repeated endlessly since they were very small, but no joke with two large teenagers.
Tony and I had a few sleepless nights feeling that we had reached another crisis, or at least turning point. Having both children at home with two parents is tough, but with one parent impossible. We agreed that Billy could only come home if he or Jo had a friend staying so that there is someone to act as a moderating influence on Billy’s behaviour (although this is not always effective) and both parents are at home. Logistically this might be difficult but we have been here before. It means cancelling other plans and commitments, which is annoying but can’t be helped. On the plus side, Billy did apparently attend a music therapy session that took place in college today. I just hope he finds a way to work through some of his anxieties and feelings in a way that enables some positive changes in his life. One of the images that came up in the art therapy this morning was that of a nut, like a conker, hard and brown but breaking open with the green shoots of new life. That is what I would wish for each of us.
Life Goes On
It’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.
When 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!
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 caterpillar 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.
One 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.
Down time
The ground has some good hard frost at last – needed to kill the unwelcome bugs in the chicken run. It has been a week with some much needed down time. I have been quite tired following surgery last week, and haven’t had the energy to persuade Jo back to school. She seemed to need some thinking time, and after a week in bed has emerged a bit more relaxed, trying to get herself into a less nocturnal rhythm for a return to school on Sunday. She has been thinking about the need for injections if she goes ahead with hormone blockers to arrest the progression of male puberty (fully reversible). Whenever we probe as to whether she had doubts about being a girl she strenuously denies this. It seems to be the thought of injections every twenty eight days as well as the initial physical checkup and blood test that are causing so much anxiety. Maybe she needed this week just to let her subconscious as well as conscious mind come to terms with things. She does have processing problems due to the FASD, but also shows remarkable perspicacity when it comes to explaining what is going on, and her thought processes. Our youngest dog was treated to a frosty early morning walk as Jo seeks to get into a better routine. I think its the first time she has left the house all week. I’ve hardly seen her as we were like the weather men, one in and one out, never both around at the same time. Apart from occasional muttering that there isn’t much food in the house (plenty in fact, but I’m not cooking for her in the middle of the night), she has been very easy and uncomplaining.
Billy had a review meeting in college in Tuesday. I felt for the poor boy with seven well-meaning women giving him advice on what he needed to do to stay in college. Neither his attendance nor work are what they should be, but he just seems to lack the organisational skills to turn the situation around. He is happy enough and his social life seems much improved on boarding school, but it doesn’t add up to the standards the college normally set out. Billy was evidently stressed by the meeting and looked as if he would say anything to get out of the situation, without taking much of it in. As someone said afterwards, he looked a bit like a rabbit caught in the headlights. He doesn’t have a plan B and wants to stay on next year, but there is quite a mountain to climb if he is going to make it. He is fortunate to have high levels of good will and support, but taking advantage of them is another matter. Attachment and trauma, or whatever diagnosis one puts on it, are hidden disabilities but with quite profound effects. There must be many thousands or hundreds of thousands of children and adults struggling with similar problems, meeting with a lack of comprehension and negative judgements from a society that is unaware of the nature of these disabilities. We were pleased that Billy came home today seemingly in quite a good mood. Hopefully in very small steps he is edging forwards into future that he has chosen and is actively trying to shape.
Sex education and the transgender child
Jo sent me a text wishing me well for my operation yesterday. I was chuffed that she remembered and was thinking of me. I was sitting in the car waiting to go home last night when her housemaster phoned. My first reaction is always, ‘Oh dear, what have they done now?’ but apparently he had a tricky situation that he wanted to discuss. He kindly said that he had phoned me as the ‘voice of reason’. I can see that when staff are close up to a situation it can be difficult to step back and consider the options. This term in Citizenship classes Year 10 are covering sex education. We had received a letter informing us of our right to withdraw our child from this section of the curriculum. Jo had been asked whether she wanted to go with the boys or the girls, and had not surprisingly wanted to join the girls. Some of the girls in the class felt inhibited with what they saw as a boy present, and at least one parent had raised this as an issue with the school. The teacher in charge of Citizenship had gone to the housemaster for advice. Maybe they were hoping we would just exercise our right to withdraw Jo and solve their problems that way, but that would stigmatise Jo through no fault of her own. I reminded the housemaster that if they felt they could not teach Jo as one of the group they had an obligation to provide individual tuition for her to cover the same syllabus with a suitably qualified (female) teacher. He was open to that, but wondered aloud about the competence of any of the staff to take on that role. I also suggested that the school could use this as an opportunity for some wider gender education, and that the Gender Identity Development Service at the Tavistock and Portman NHS Trust in London, and Gendered Intelligence, must have plenty of experience they could draw on in this area. I offered to speak to the headmaster to see if he would pay for someone to go and speak to the staff and/or students.
It was also a chance to discuss with the housemaster what Jo had said earlier about feeling it had been left up to her to explain to fellow students about being transgender, and what it meant. She rightly felt that this was not fair. I passed on to him that tutors had not adequately explained to their tutees what it meant to be transgender, and that just saying that Jo had changed her name and would return to school in girl’s uniform wasn’t enough. He conceded that most tutors probably hadn’t explained it as they didn’t understand themselves. We left it that he would talk to the head, but I can see that this is one I will need to follow up. I do hope that this becomes a positive opportunity for some further education rather than just a negative experience of stigmatisation and exclusion for Jo.
Meanwhile Billy continues to avoid classes at college, and the people who could help him, while sending regular texts for more money. He wanted another £20 because he ‘took the wrong bus’ which I think probably translates as ‘had to ask x or y who is over 18 to buy tobacco for me and pay them to do so’. I continue to urge him to speak to his tutor or leaning support teacher about issues he has with attendance. He did say he was feeling overwhelmed, but seems paralysed when it comes to doing anything about it. People can only help, however willing they might be, if he turns up. I can’t seem to get that through to him. I have seen the same situation with university students, some of whom are probably exhibiting signs of depression, but they are not my responsibility in the same way and are older, better able in theory at least to take control of their lives. It is hard to know when to stop pleading with and for someone, and just let them get on with making a mess of things.
We put the dog pack in kennels for a few days so that I have some post-operative time without them jumping up and pulling on the lead like a husky team. It is blissfully peaceful in the house without them. Much as we love our dogs we never planned to have three large ones. It makes a change to be able to leave doors open or unlocked (the pointer can open every unlocked door), without dogs rushing through the house, muddy feet and enthusiasm everywhere.
Going With The Flow
I thought of calling this post ‘Last Chance Saloon’ or ‘Trouble with Teens’. While walking the dogs I stood by the river and watched the water flow towards the sea and tried to let my anxieties flow away with it. A bit of green plastic was travelling down the middle of the river preceded by a log. It was easy to imagine a mini-submarine on its journey downstream. A heron took off from the opposite bank and buzzards wheeled and called overhead. I had had a sleepless night worrying about Billy and his poor attendance at college. His learning support tutor emailed me yesterday to say that one of her team had seen Billy in college in the morning, but that he hadn’t turned up to the class immediately after this. Particularly frustrating for the learning support worker who had made the effort to be there to help him. I suspect Billy was off to the cinema with some friends. He knows that he has a review meeting coming up next week and that attendance is crucial. Despite this he is only turning up to around half his sessions in a not very crowded or demanding timetable. I lay in bed wondering whether I should send him a text reminding him to go to his learning support class at 9am today, and other lessons, or he would probably be kicked out. I decided against possibly waking him at four or five in the morning with the ping of a text and left it. I then had a phone call from his tutor, telling me what my mind had already worked out, but Billy’s evidently hadn’t. That there was little chance that his teachers would take him for Level Three work next year on present performance, and that if they didn’t think he would pass the year they would ask him to leave straight away. We are back at the same place in an ever-decreasing spiral, with few other alternatives if he miscalculates here, as well he might. Billy is still only sixteen with two and half GCSE passes, no work experience, few life skills, not much self-discipline and expensive habits. Not an employer’s dream, nor an anxious parent’s. There is not a lot more I can do for Billy right now, hence the need to unknot my stomach and let the tension flow out of me and downstream with the flotsam on the river.
Tony did get Jo to school Monday morning after our failure to do so Sunday night. His patience was just beginning to crack after about two hours of cajoling her to get up and dressed, but eventually they left the house at about 9am, so quite a triumph really. I gather they had a useful talk in the car, so maybe it was worth the delay to have that opportunity. Reading this blog had alerted Tony to how socially isolated Jo is at school. The boys don’t really know how to react to her transitioning to a girl, and she can’t socialise with the girls after 9pm when they have to be on their single-sex landings. Tony talked about how this might be an option if she moves ahead with hormone blockers, and wondered aloud whether her reluctance to do this means that at some level she is ambivalent about it. He mentioned an online trans friend Jo follows on social media who still uses his male name and seems to enjoy moving in and out of a female identity. Jo reacted strongly and said that Tony talking about it stressed her, and that when he said things like that it gave her doubts. Tony was able to talk about facing any doubts and fears rather than repressing them, as they would always bounce back to hurt her. If she allowed the doubts and associated feelings to the surface she could have a look at them and come to a decision. Without doing that she was locked in a panic state. Whether she was able to process this advice and act on it is another matter. Tony is hopeful that it could be something of a breakthrough. It is certainly a message we can both reinforce and try to support her in moving ahead in whatever direction she wants to go. Another case of going with the flow, over rapids and around obstacles if necessary. I will try to practice making that the theme of the day.