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.
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.
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.
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.
Jo was bored. Billy spent Friday night at a friend’s house, then phoned very early Saturday morning to ask how he should get home as there was snow on the ground. We checked the trains on-line, all running normally. He eventually made it home by early evening, but in the meantime he had invited another friend along as well, a refugee from building work on his house. That meant that Billy had company all weekend and didn’t need Jo. Jo was bored and stressed. I don’t know quite what happened but there was some incident on-line with one of her oldest local friends, who never wants to see her. Maybe with Billy occupied she had tried to find other company and was disappointed that it didn’t work out. It became apparent on Sunday that she had no intention of returning to school. By the time we took Billy to the station on Sunday evening to make his way back to college we found “my blood is on you all” smeared, in blood, all the way up the white wall of the staircase. On Billy’s bedroom door, along with more bloody finger marks, was the word “Die”. Very jolly! Tony and I were both tired and not in the mood for Jo’s drama-queen antics. We focused on getting Billy out of the house, and assured him that we were not ignoring Jo’s behaviour, we just weren’t sure how to deal with it. He suggested she needed an exorcist.
Part of me wanted to ring her CAMHS counsellor first thing Monday morning to say that we simply couldn’t cope with this sort of thing. Part of me just wanted to tell her off and get her to clean it up the mess, as it seemed indulgent and uncalled for. Billy and his friend had ordered a Domino’s Pizza takeaway after supper on Saturday evening, refusing to share any of it with Jo. On Sunday Jo refused to eat saying that she only wanted a Domino’s pizza. I don’t usually buy them as they strike me as overpriced and not particularly healthy, but Sunday afternoon I had made a special journey to get Jo a Domino’s pizza. This she had turned down on the grounds that it was too small. She had evidently boxed herself into a place where she felt she had to act out her frustrations, as happened so often when she was younger.
Fortunately Tony and I were too exhausted to do anything and Jo was hiding under her duvet, refusing to make contact with anyone. We decided that we would ignore her histrionics, calculating that she was not a suicide risk. I could see some blood on her sheet and broken glass on the floor, but nothing to cause too much alarm. We hadn’t the energy to try to get Jo back to school, and phoned to say she wouldn’t be in that evening. Her housemaster was relaxed about it so we did not feel under any great pressure from that direction. A couple of hours later Jo appeared in the kitchen and presented me with a dirty pink flannel, with which she had evidently wiped the blood off the wall (we have tough wipe-clean paint for good reason). I asked her to move the flannel from the kitchen table to the washing machine, which she did. She then found the remains of her breakfast sausages and the Dominos pizza still in the oven and disappeared upstairs with them. She didn’t say much until this evening (Monday) having slept all day. She is clearly stressed, and has cuts all down one arm, having broken something made of glass her friend had given her, in order to make the incisions.
Part of the problem seems to be Jo’s indecision about going ahead transitioning from male to female. She feels female and just wants people to treat her as a girl, but is finding it hard to accept that she needs medical intervention if people are not going to see her, at least partly, as male. We find it easier and easier to think of Jo as a girl as in personality, and the way she talks, thinks and acts she has always been far more female than male. But one can’t escape the facts of puberty. However she dresses and does her hair, Jo is in a male body. Hopefully taking about it, rather than just acting out her frustration and sense of isolation, will help Jo move forward. I’m glad we didn’t react to her message in blood, even if it was because we simply didn’t know what to do and were too tired to engage with it at the time. You could say it was a call for help, certainly a bid for attention, but not one we would wish to encourage. Being fourteen is never easy, and for Jo there is a lot more to work out than just who your best friend is and why she doesn’t like you.
One sometimes hears that bereavement is the most stressful event in many people’s lives, followed by moving house. The thing that sends my stress levels through the roof is children refusing to go to school. Both kids have done this for prolonged periods, making full-time paid work impossible for me. This evening we should have been taking both children back to school but the signals from Jo were not promising. It started early afternoon with complaints about feeling sick and generally unwell. Spending the weekend in the dark playing on her computer or lying in bed with an iPad while snacking can’t help the digestion or headaches. She insisted that this was not the problem. Not taking a very long shower (an hour plus) was another bad sign, as was the fact that at 5pm she was still in her nighty, which she’s been wearing all day. Bringing her English prep to me about the time we were due to leave was a good sign, but was quickly followed by a return to bed and refusal to speak to anyone. My body was pumping adrenaline and I was feeling homicidal by this point, trying hard to maintain a calm exterior. I took Billy back to college (two and a half hours round trip) as he was already sitting in the car having a cigarette. I can’t see his tobacco supply lasting the week. I didn’t want to be in the house with Jo as years of school refusal have taken their toll on my nerves. Although feeling exhausted, at least taking Billy offered me the prospect of some time to myself in the car on the return journey. Walking into the kitchen on arriving home to find a new load of dishes and pans sitting by the sink didn’t improve my mood. Nor did discovering that Tony had not informed Jo’s housemaster that she wouldn’t be returning tonight. He had apparently had a rather odd conversation with a duty member of staff in Billy’s old school, who had eventually asked him which school he thought he was talking to. I have given Tony the phone number of Jo’s housemaster numerous times, and he could also have googled it. It is not the events in themselves that get to me, so much as continually having to take responsibility for others – I feel the need of some downtime. If I were an animal right now it would be a prickly hedgehog.
The problem is that for years, pretty much all her school career, we have struggled to get Jo to go to school. If we thought home education could work we would have tried it, but she is a non-co-operator and would have simply spent her entire life in bed. As an infant we could use physical force to get her dressed and into school. Once there if not happy, she did not generally appear unhappy, and she is a very sociable child, loyal to her friends, funny and good company. The middle primary school years were particularly hard as she was big enough to resist getting dressed or getting into the car, and out of it again at the other end. We might resort to force – extracting her from the foot-well of the car where she had jammed herself, then locking the car doors, for instance. Until the end of Year 5 I would then have to give her a piggyback across the playground to the school entrance. This process, which started with waking her up about 7am, often took till lunchtime, making a normal working life impossible. I would just have time to go home, have something to eat and walk the dogs, before it was time to pick the kids up again. To say that she has problems with transitions is an understatement. I loved my job, parts of it anyway, and it was good to be in adult company, but finding the time and energy for challenging children and a career was a nightmare.
There have been periods of weeks or months more recently when we began to think that Jo’s difficulty in getting into school was behind us, but sadly not. This is the second time in the last three school nights that we have been unable to get her there. When this happens it is rare that she makes it in on Monday, wiping out Monday for doing anything else, but she generally surfaces by Tuesday – taking out most of Tuesday as well. On the last difficult Sunday, the last week of the Autumn Term, she did eventually get dressed, and her bags were all packed and in the car. It got too late for Tony to come along and share the driving as he had to be up early Monday morning for work. Jo eventually came outside and to stop her going in again I locked the house. She stalked off round the side, in a well-entrenched pattern of behaviour – when little she would run into the garden and hide just as we were about to leave. I sat and waited in a cold dark car. Nothing. Eventually she returned and tried the front door, realised it was locked and went back into the garden. After about an hour in the car I had a phone call from her on my mobile (cell phone) to say that she was in the house. I had to admire her determination, which has never been in short supply. In pitch darkness she had manoeuvred a very large ladder from the far side of the house onto the decking, and up to my study window, then climbed in, leaving the windows wide open on a bitterly cold night. She was back in her bedroom and had no intention of moving. It was about 11pm by this time, and although the school had been alerted and said they would let us in when we arrived, I wasn’t up to a long drive there and back again by that point. One-nil to Jo! I revel in the fact that the children can now put themselves to bed, as bedtimes were awful, but it will be so good when we no longer have to persuade reluctant children to go to school, for them as well as for us.
What children say or show doesn’t necessarily reflect what they are thinking and feeling. We get used to the kids acting out whatever is going on, but like all teenagers and indeed all people, they have at internal life that is less visible. Tony’s conversation with Jo on the way home from school today revealed that she had indeed been aware of my intended operation and was concerned at the delay. She had seen a letter from the hospital on the kitchen table a few weeks ago, and volunteered that even with a benign tumour postponing an operation is not a good idea in case it becomes malignant. She also remembered that both my sisters had operations last year for cancer, and wanted to know whether the hysterectomy I had many years ago was because of cancer (it wasn’t). I know from similar conversations with Jo that she worries about her birth mother’s health as well. I usually only hear after the event if her birth mother texts or phones me to say that she has been ill, generally as a result of the toll her addictions have taken on her body. I might say something to Jo, but not enough I hope to cause too much concern. I keep in mind that if Jo’s mother were very seriously ill I would at least like to give Jo the chance to meet her. It wouldn’t be a great time to see your birth mother after many years, but she might also regret missing the opportunity, even though at the moment she doesn’t feel the need to meet her. They have not had direct contact since before Jo came to us as a baby at 11 ½ months old. Tony and Jo also talked about the effects of her FASD, and Tony explained how much she had improved and learned to compensate for its effects, and would continue to do so. He reminded her of an occasion many years ago at a children’s party. They were playing ‘Simon says’, an imitation game. Jo’s reactions were about two seconds behind the other kids, as it took her longer to process the instructions and react. A couple of years later he saw her playing the same game and the gap had all but closed.
The sound of footsteps in Jo’s bedroom was enough to send Tony upstairs. It sounded as if Billy was in her room, which can lead to a bust-up. In fact she had just spilt very hot gravy over her hand and bedding (lovingly washed and changed by me a couple of days ago), as she insisted on having supper in bed. Half an hour, clean duvet and sheets later, beloved ‘bunbun’ (off-white rabbit) in the washing machine, and burn lotion on the hand, I am just finishing these reflections. Billy too managed to spill his drink all over the kitchen table while eating, covering unread post and magazines. We need a cleaning fairy or elf to follow them around with a magic cloth. Instead all they get is me, bemoaning the mess, and a happy cat licking the remains of the chicken pie and gravy.