A Hard Weekend

Tags

2son, autism, fear, journey, love, pain

I spent Friday going to visit 2son at his new school. They are very happy with him and he is settling down well. We then managed to spend a couple of hours together and he talked of his fear of getting depressed again and how he couldn’t accept his progress and how well he had settled in as he expected to crash. It was a difficult conversation but much better to have it although I found it so hard to not put my arms around him and never let him go. He is as settled as he can be.

It was a long day travelling, 16 hours door to door that I did by train. Whether it was the length of the day or the conversations I had with him I do not know but I spent the weekend feeling emotionally and physically drained. I felt a need to recover and recuperate, to curl up on the sofa and watch crap TV, so I mostly did.

I felt and still feel the tension in my body, a tightness in my chest and butterflies in my stomach. I worry for him but I also feel the parallels with my own journey. I am beginning to grasp the need to look after myself, physically as well as mentally. I want to do so more in terms of developing mindfulness and physical activity that I risk worrying myself about doing everything I have decided I need to do. Self care is so complicated. 2son has had a brief taster of mindfulness and apparently of yoga. He is very disconnected from his body and his mind and has a long way to go.

I think the conversation I had with him reminded me of how far he has to go and that while the getting out of bed and going to college is brilliant, he also has to work on all these other aspects and learn to cope with himself and at this he is a mere egg. He will have to go through a lot of painful self examination, trying and failing at all sorts of things in order to develop ways to live that he can cope with and I think I’m just feeling heavy from the thought of what he has yet to go through. I love him so much and yet I cannot do this for him. He has to do it himself. But he is in a good place and there is much warmth from the staff and he is clearly well looked after. Choosing this place was my contribution. Now he has to work with the staff and make his.

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Only a Fortnight

Tags

2son, 3son, 4son, achievements, headspace, holiday, progress, sons, summer

It’s only been a fortnight since my last post and yet so much has changed.

I complained to our local policeman about the lack of police involvement and he’s taken it up, which is good, but you shouldn’t have to know someone in order to get anything done.

Finally got to a point where I could pause with the house. All beds are up. Two trips have been made to the charity shop and one to a dogs’ trust to dump excess duvets. The attic has been half cleared as has the space above my wardrobes. It all feels emptier. Next is sorting out pictures and frames and thinking about more painting. But it all feels good.

4son has started his A levels, with a visit to local universities to remind them the point of it all. He’s cheerful and has come back to football and is dragging his big brother along for the ride which is great. He did very well in his GCSEs and is remarkably balanced.

3son is still as happy as a pig in shit with his apprenticeship, coming home and spending 2 hours telling me every single detail. It’s great, it’s marvellous, but I do wish he’d shut up.

2son has moved to his new school successfully. We arrived and there was no table for his computer, no internet (which he knew he’d have to get) and abysmal wifi. He wobbled and almost collapsed, but didn’t. He got up the next day and went to school and has done every day since. He is absolutely awesome and I cannot tell you both how proud I am of him and what a relief.

I’ve come back from that visit with a week before starting college and it all feels like I haven’t had a holiday, mainly because I haven’t and that my head is all over the place with things to do. I’ve also got work to the house slightly closer to actually happening which is another achievement. I do not feel that I have fully cleared my head and am ready for the new year which is a bit difficult. I’m thinking of a holiday this term but haven’t looked at dates yet.

So I’m feeling that we’re all in a good place and have made magnificent progress over the summer but I’m feeling a little bit lost and wanting to settling back in to a normal routine, although life is never normal.

We Have Funding!

Tags

2son, funding, school, SEN, thank you

I got the call around 4pm. I was in a meeting but thought I had better answer it in case there was something I could do before the day end. Our nice new SEN officer (she’s been in the post over a month so that says something) just went you’ll be pleased to know you have funding, for the school you want. And she followed it up in writing.

I found it difficult not to jump up and down, so I did. I rang up 2son and he was rather pleased. I messaged my son at home and said find champagne and bung it in fridge. I went to the pub. I went home. I drank fizz with a friend. We went back to the pub.

It reminds me of first being pregnant when everything is “I’m doing the washing up, and I’m pregnant”, “I’m going to work and I’m pregnant”. Everything has a little chorus at the back of your mind telling you you’re pregnant and it’s wonderful. It is of course all those hormones swilling around but I currently have the exact same sensation. Everything I do has the extra tag of “2son’s got funding”, whether it’s relevant or not.

I was not expecting this. I was expecting them to haver a lot more and that I would have to fight, to explain, to justify, all that stuff. But I didn’t. The weight off my shoulders is incredible. It’s been sat there for over six months. I can now worry about more mundane things like whether I can get him to cut his hair before he goes (or at least wash and brush it). We have to go clothes shopping and buy him a big coat as he’s going further north. All sorts of things.

But we have funding and that means the sun is permanently shining in our house for the rest of the summer. Thank you tax payers one and all: this type of specialised provision costs the best part of £100,000 a year and we all know that money doesn’t grow on trees.

It’s Hot…

Tags

2son, challenge, conversation, heat, phone

As I’m sure you’ve noticed. We’re not used to this heat, not day after day. It is a struggle to get brain cells working. I tried at some point to day and gave up. Instead I spent the day lounging in the garden in the shade finishing off a book that had nothing to do with counselling but just a brilliant 600 page turner. That was me for the afternoon. I did get twenty minutes of sunshine before it disappeared but really, unless you wake up with the sun and enjoy it before it warms up then doing anything is too much like hard work.

Tomorrow I have to go for a medical test which should be fine and then into London for a concert. I can’t say I’m looking forward to having to get on a train but they are air conditioned. Which is more than Boris buses are. I’m amazed the trains haven’t all crashed to a halt due to warping tracks.

One spectacular result today though: I spent almost an hour on the phone with 2son. He started off with one word answers and I thought here we go again. Last time I spoke to him he was just about to start a game with people so I had to leave him to it and the time before he just wasn’t in the mood so I left him. Today we had a proper rambling chat and I’m really pleased that he sounds relatively sane considering how his future is hanging over him. I realised that he and 1son are the two who challenge my thinking and that I really miss not having that. 3son is more belligerent when disagreeing and it becomes a competition and 4son doesn’t argue with me. Anyway, it was lovely. Sometimes it’s so hard to just pick up the phone not knowing what response you’ll get.

A Plan, Sort Of

Tags

2son, beautiful you, catch up, plan, reflection, school

Having said I need a plan for where to go next, after having completed our TA questions, I think I have come up with one.

I was searching for self-awareness writing prompts, which came up with a lot of lists that were a little bit relevant but not very and then I remembered that I had tried this with Rosie Molinary‘s Beautiful You: A Daily Guide to Radical Self-Acceptance some six years ago.

Giving you a prompt for every day for a year it offers a reflection to consider or an action to take. I only managed a dozen or so before I gave up but I am going to have another attempt. This time I’m going to use the second edition which I bought (she gifted me the first). When I have journaled previously I shall compare and contrast, hoping that I’ve grown in the last six years (which I know I have). Since I’ve now got two copies I’ve leant one to my therapist so we can discuss.

It’s a good plan but time for reflection has suddenly shrunk. We had our course residential weekend which went well but was exhausting and I haven’t finished post weekend reflections and write ups. We have two small essays due soon and two more big ones that both need preparation for. I do not feel at the moment that I have time enough to process the work we are doing and I feel that I am playing eternal catch up.

I had a day visiting 2son’s school where the snow didn’t permit me to visit him, closely followed by the residential weekend. I then spent three days with 2son taking him for a day trip to a potential new school. This is hugely exciting as I visited it in November and it’s taken us this long for him to be willing to visit. They have offered him an assessment next week when he stays for two nights and I have to be around in case of need so that’s next week devoted to him. I really had my doubts until he got into the car as to whether he would come or not. I didn’t know what we would do if he didn’t as he’s a bit big for me to throw over my shoulder and the staff aren’t permitted to be physical with him. So inside I was panicking all the way. I went to collect him and he was still in bed but he opened his eyes to me which was a relief and then he threw me out so he could get dressed. After five minutes I was clock-watching wondering how long it takes him to get dressed. Anyway it was all splendid. He visited the school and two houses, one on a par with his current house and one for the more independent student. Everyone was nice and he did ask lots of questions but seemed as relaxed with it all as he could be. So maybe I won’t worry quite as much about next week.

I did take my course work with me but failed to do any of it other than a bit of reading as I really wasn’t in the mood. Unfortunately I do not have the luxury of not being in the mood at the moment. Work is just being let go for these busy weeks.

So having decided that I’m going to use Beautiful You as a writing prompt I have yet to write #1. Here’s to the future.

Benefits Bonanza Day

Tags

2son, £25000, benefits, council, disaster, housing benefit, overpayment, support

I telephoned the CAB on Thursday. I asked whether I should appeal on the basis that I didn’t know what was going on and wasn’t getting any information or whether I should keep pursuing getting a statement of reasons. They said they would refer me to a specialist which would call back within 48 hours. I realised this might mean Monday morning and tried to set it aside.

I tried to take charge of something and applied for child benefit for 2son as the CAB had advised me to do, saying if I got it for the next few months that I’m entitled to, then I can appeal to have it backdated based on incorrect advice given. As it turned out, I’m glad I got that moving.

I emphasis the “tried”. People ask me how I am and in my head I’m answering that everything is actually really positive except for this massive disaster that’s looming over me. How much of that answer I actually give depends on who they are. Even then the reply tends to be me “oh that’s awful” before moving onto something else. People who don’t get benefits, who haven’t had to rely on the state simply do not realise how terrifying these things are.

A Really Hard Week

Tags

2son, 3son, 4son, emotional, rope, suicide, teenager

I know it can get harder but this really pushed me to my limit. And then some. It started so well.

Last week 3son threw a wobbly at the idea of reverting to how we had been before summer came along, with all three of us on computers in the same room. I’d started it that way years ago when they were younger so that I could keep an eye on what they were doing on the computer and occasionally chat to them. Once I got over being angry with my son for being difficult I realised that actually he was right and it would be nice to not have to listen them play their computer games online and shout at all their team mates.

So we spent Sunday moving everything about and I did a fair bit of cleaning with the result that I have a lovely new office that has no space for everyone else and they have their computers upstairs where I don’t have to listen to them and all seemed well.

3son has been increasingly difficult, with the stress of exams and a lack of identity making him a troubled teenager. He hasn’t found his place in the world and is worried there isn’t one. He gets very angry and upset. He has some good friends he can talk to, but there is a lot in his head that he never lets out. He has tried counselling a few times but has never really clicked with the counsellor and has never given himself up to the process. Hence every so often it all explodes and he often goes for a long walk to calm himself down, usually late at night. It’s not ideal but it works.

This time however, he took a rope.

He told a couple of friends that he’d gone out and bought a rope and one of them was concerned enough to get in touch with 4son and the two of use looked at the screen grabs of chat between 3son and his friends and wondered whether we needed to panic or not. We decided that yes we did. Naturally 3son was refusing to answer his phone but he eventually told his friend where he was and I drove off to find him before he moved on. As I did I wondered how I’d cope if I couldn’t drive and had to rely on others for help. We ended up going for a two hour random drive as he refused to come home, saying he didn’t want to sleep at home but didn’t have any friends he could stay with that night. So we went for a rambling drive and talked about stuff.

We talked about him not being sure about what he wanted to do or how to achieve it. He doesn’t have a passion for any of his subjects and he realises he finds it hard to work well if he’s not really interested in something. He wants something to engage him and is feeling lost. I did my best to reassure and he did end up signing up for as many enrichment classes as he can in order to just try things out. But I’m not sure he’s willing to put enough energy into anything and he needs to in order to find out whether a subject or activity can really grab him.

We also spent some time talking about my childhood. I’ve always glossed over it as he was too young for me to really discuss it but I found myself driving on a road I used to live on and so we talked about my parents and growing up in London when we were all unhappy and my dad’s affair and me being unhappy at school. I think in some ways it really helped him to realise that I had been there and did know what he was talking about. I’m not just trying to be a good parent but I do empathise with him. I do remember being his age and I do remember thinking that life really and truly sucked. I told him about my half assed overdose and again that bonded us.

It was a long and exhausting evening and a week on I still don’t feel I have recovered. 3son is going around as if nothing has happened which really makes 4son angry. 4son was brilliant, getting in touch with 3son’s friends and guessing passwords and trying to use track my phone to find 3son. He was incredibly responsible and mature and I’m exceedingly proud of him but it affects him too.

I feel drained, as if I had been wrung dry. Then of course I had to wake up the next morning and start on my counselling course whereas I felt I had done my quota of counselling for the next month or so. On top of that I’m trying to write my next letter about funding for 2son who has had an excellent year but they have decided that one more year will do him. The haven’t got any basis for the decision but I just can’t find the words to express how I feel. I can; it just involves an awful of of rude words and suggestions. My MP has agreed to write a letter of support which is nice, but she needs me to draft it so it has the right points in it so I have two to write. I haven’t been in mood which is no surprise but the clock is ticking and I need to sort it out. I’m going up on Tuesday for a meeting with school and 2son and hope that will invigorate me.

So yes, this week has been tough, and I wonder how long it will take before it gets better. I have to believe that it will one day. 3son will grow up and will find his way. In the meantime it’s going to be a bumpy ride.

 

A Miserable Relief

Tags

2son, ASD, camhs, fear of institutionalisation, placement panel, SEN, senior management, social care, social services

After three weeks of chasing an ever-increasing number of people at the council they have finally more or less agreed to fund 2son through the summer after he returned to school. Final confirmation will wait until somebody returns from holiday on Monday. So it’s agreed, but we’ve been asked not to tell 2son until it’s agreed.

I resent bitterly the fact that people I’ve never met, whose names I barely know and whose titles I’m only vaguely aware of make such momentous decisions about our life. The people who do talk to me directly refer to them as “senior management” which couldn’t get much more faceless as a description.

It’s been a tough three weeks. I’ve had to dig my heels in and say phrases I don’t want to have to say.

He can’t come home.

It’s Been a While…

Tags

2son, funding, therapy

Well we’ve had three months of 2son at home. It’s been a long and lonely time. Our social worker has improved. He listens to what I say and acts upon it although it does help if I tell him what to do. But he’s still here.

We finally got 2son back to school with the presence of the social worker, a placement officer for an alternative placement and a call to the police. I then had to take him up to school, stay overnight and come back again.

Relief was short lived as funding for his placement has run out so he is there for 3 weeks until the end of term. The council are not minded to fund him for over the summer. They might fund him again from September.

So a strongly worded letter has been sent.

In other news…

Therapist is lovely and I enjoy working with her. I increasingly come home wanting to write but quite frankly at the moment I haven’t the energy, hence the long gap. We’re spending less time talking about food and more about my parents, which is necessary. She said today that that she heard “I want to break free” by Queen as my song, in that I want to break free from my parents, my children, anything that ties me down.

So life is a bit shit at the moment. There’s so much more to say but I’m really not motivated to say it.

Failed Intervention

Tags

2son, camhs, education, future, placement, social worker

So it’s been 3 weeks since 2son announced he wasn’t going back to school. Since then we’ve had a visit from the new social worker, who has yet to sound as if he doesn’t need further support and training.

Ten days after the announcement we had a meeting at school (attended over the joys of the internet by me) with about seven members of staff (which is why it took so long to happen) to discuss the options. No one from council, whether care or SEN was able to attend. The best plan was to knock 2son out and bung him in the back of the car and drive him up. It’s still a tempting option.