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.

Disaster Strikes

Tags

2son, disaster, education, social worker

2son’s return to school was delayed by a week due to their not having any water. When I finally woke him up after a day of trying to get him in his taxi back to school, he informed me that he wasn’t going and that he’d decided this a week before the Easter holidays.

So I phoned up the school to let them know and phoned up the duty social worker to ask whether someone could please pick this up. His last social worker (5th in 2014) left during the Easter holidays. To be fair I got a phone call from the manager the next morning at 9:02am clarifying the situation. We have an emergency meeting booked for the school this week but not until Thursday as that’s the earliest all their staff can get together.

Stuck in a Rut Again

Tags

2sis, 2son, 3son, 4son, driving, frustration, rut, tired, work

I am so fed up. Fed up with being tired and not having enough sleep. This may sound familiar as it’s certainly not the first time.

3son is determined to never go to bed before midnight and I can’t go to sleep leaving him up as I just worry about him going to be. So I stay up every night until I’m so absolutely shattered that I can’t not sleep before him. The trouble is, if I leave him up on the computer he’ll stay there for a couple of hours, and if he is off he is likely to go for a bath, anything to delay going to bed. He gets up early as well and seems to function on not a lot of sleep. The trouble is I don’t.

I really have lost the will at the moment. I think I am just fed up with the same old routines every day at home and the same old arguments. We’re stuck and we don’t go out as a family any more. It hardly ever happens. I know that’s certainly fairly normal at these ages (12 and 14) but 3son will usually not go out at the weekend at all. If I say anything to him at all, I get the “It’s a wonder I can function at all, the way I feel” kind of attitude. I know he’s finding growing up hard but it’s exhausting trying to talk to him. If he’s not telling me how much he is suffering he is telling me how much the world is suffering and how stupid the people are in it.

Mind the Funding Gap

Tags

2son, CHiRP, funding, schooling, SEN, social worker

So it’s been four weeks since 2son left for his assessment. It’s been successful but that’s not the issue.

After week 2 I contacted his social worker to find out whether he was working on getting permanent funding organised, only to find out he was on holiday for the week. So I contacted Special Needs who said don’t worry about the funding, as long as he’s offered a place we’ll fund it and approve it later. Or words to that effect. On Monday of week 4 therefore I get in touch with the social worker to find out what’s happening. The panel who need to meet to agree funding are going to meet this coming Monday, in other words week 5. I see a problem.

Would the council possibly consider funding 2son  from Saturday to Monday or do I have to go and get him on Friday and possibly return him on Tuesday if funding is agreed? I ask this on Tuesday, on Wednesday and on Thursday. On Friday the school contact me to ask if I have heard anything. I explain the situation and they phone back several hours later to say they’ll keep him until next Thursday. How kind I say, as nobody has got back to me from the council. While worrying about all this I’ve also been trying to get ahead with work so that I can take Friday off if necessary. Now we’re waiting for Monday to happen.

On top of that little funding problem the social worker tells me that he doubts very much that the panel will agree to fund him for 52 weeks and will probably just agree the term time. He says it would be “helpful” if 2son spent his time at home terrorising his brothers and offering them violence but that continuity of care is the only argument he has. He said he would ask for funding of this Summer holiday on the basis that 2son has settled in nicely; it’s been a while and it would be good to have him ready to go in September.

On Thursday therefore I sit down and write a letter to the panel. I talk about the fact that 2son hasn’t been anywhere for 4 years, has hardly spoken to anyone in that time who isn’t immediate family or professionals. Therefore he needs the holiday time to get used to people and to going out and actually doing things. I waffle on about the changes in the last four weeks and how much easier it’s been for the three of us at home. I get his younger brothers to write something themselves that I then scan in to prove they really did write it and send the whole thing off on Friday. Hopefully the panel will take note of it and hopefully it will help the social worker prepare his arguments. I also had a list of arguments from my friend who supports parents of children with special needs.

The last few days I have been a bundle of nerves. I’m keeping Thursday clear in case I have to travel up and collect 2son. He’s been kept in the dark about all this so that he doesn’t worry or withdraw as he did when he was about to be kicked out from the Priory.

I wouldn’t mind any of this debate half as much if I thought the CHiRP panel were actually going to consider 2son’s best needs and the welfare of the rest of us, rather than the cost.

A Silent House

Tags

2son, assessment, peace, residential, school, silence, son

It feels weird.

I have a house that is silent in the day time unless the phone rings. I haven’t even been playing music or radio during the day because there is no gaming noise to mute. I can listen to the silence.

I went up on Monday with 2son. Despite refusing to go out and buy shoes that he needed he actually had a bath and washed his hair and shaved on the morning. So not bad. We got to the school, found his room and he unpacked and put it all away. We had a quick look round his classroom and some of the places we hadn’t seen last time and that was it. We met half a dozen teachers and therapists as well as what seemed like another half a dozen day and night carers and workers.

He’s in a “house” which is a first floor above classrooms with around 4 other students, all of whom seem to play the same silly video games as he does so that’s a good introduction. He seems to be settling in well and I’m getting daily updates from his key worker as to how his life’s going. He seems quite happy and settled. Already.

My fear now is that we’ve only got four weeks funding. They may extend it for another 4 weeks or they may decide to fund it properly. In which case they were murmuring about why did he need 38 weeks rather than the full 52. I wouldn’t mind the conversation if I thought it was about anything but cost. My brilliant social worker is leaving at the beginning of August and I hope he’s going to find time to fight the next round of requests for funding.

Here I am, running away into the future. 2son has only been away two full days so far and I’m trying not to panic about what goes after. I’m certainly not being mindful and enjoying the present. But we know that 2son may have to come back after his four weeks because funding is not agreed and that would not be good for him or us. We all need to know.

In the meantime I’m trying to learn to enjoy the peace and quiet during the daytime without it feeling empty. I have a little bit more energy to spend with the other two and that’s good for them. I’m also putting my feet up and relaxing in the afternoon rather than trying to Get Things Done.

Thank You Taxpayers!

Tags

2son, autism, funding, panel, school, social worker, son, taxpayer

We have funding for schooling for 2son and he’s off next week.

Over six months ago he left the Priory without any provision in place. He attended CATE (local small school) a couple of times and gave up. And so, it seems did everyone else. We got a draft statement of needs in November that achieved nothing as we didn’t have a school to go with it. There was a total lack of contact and support.

The panel that makes these decisions decided that as he had shown no commitment to receiving help (looking at CATE rather than what he achieved in the Priory) they wouldn’t fund residential schooling for him unless he showed commitment. Residential school post 16 might be an option (and it comes out of a different budget but hey, who’s counting).

I got help and advice from a friend who runs a charity helping parents of children with special needs to work their way through the system. She wisely explained that an autistic school would work with the child in a much more supportive way than a school specialising in behavioural, emotional and social difficulties which would try and modify the child rather than support him. Therefore the best solution is to go with the autism diagnosis to get him the school that would best help him.

I sent in a letter of protest to the panel, as did CAMHS. The panel had agreed to fund a month of something unspecified to help 2son. The fact that any funding has to be split between social care and education budgets does not help the process. The social worker, who is absolutely bloody marvellous let me say, and I worked on a plan to get 2son into some sort of residential placement for a week. I was thinking of an activity holiday week as we were coming up to Easter which would demonstrate his ability to commit. This idea somehow got transformed into finding a school and agreeing the funding for a trial in the hope that a successful trial would help convince the panel to fund him.

With the draft statement back in November came a 160 page document listing every school in the country that covers some sort of special needs. So I started going through it, crossing out the girls schools, the boys schools, those that didn’t have boarding, those that didn’t go up to 19 years. This eliminated about 90% of them. The task was then to go through the remaining ones, pick out the ones specialising in autism, that offered 52 weeks of care and offered a high level of education for the higher functioning autistic children who are capable of doing well with the right level of support. It seems most schools that support autism focus on getting any type of piece of paper and getting the students to manage themselves on a daily basis to become as independent as possible.

So how many schools did we find that meet 2son’s criteria? I spent two days going through the list and then  said friend came round and we spent another day sorting it out. She had advised that if we waited for the council to find a school it could take forever.

We found one school that met these criteria. Just one.

So I submitted the school to SEN and waited for them to have a look. It was approved, papers were sent to the school and they invited us to a visit for a day. We went three weeks ago, without the social worker as he was accidentally placed as the duty social worker that week. He was not pleased and suggested that a letter of complaint would be useful. I didn’t actually get round to it.

2son and I went up on a Friday. He’d had a bath and hair wash the day before, the first for months. He asked questions and it was a lovely place. On the way back I phoned the social worker and said yes. He more or less hung up on me to get the wheels moving. We waited until yesterday for the panel to look at all this and to agree to fund a trial period of a month which if successful would lead to ongoing support until he’s at least 19 and up to 25 if necessary.

He goes on Monday. This week we pack for a month, which will necessitate a vital shopping expedition as he hasn’t been wearing clothes or shoes for a long while, let alone everything else he needs. I have to get him out out of bed first. There is paperwork. I feel triumphantly pleased and stress free for the future and a total bundle of nerves. He’s been living at home for almost four years and he’s going. I am not going to feel anywhere near normal until next week sometime at the earliest. Now everything is just swirling around my head.

I’d like to say it again. My social worker, who has only been on the case since 2son left the Priory has been brilliant in fighting for 2son’s needs. Despite having a heavy case load and running around like an overworked headless chicken he has been supportive, honest and a strong advocate.

As to the post title, well normal state secondary schools get funding of £8,000 per student per year. This school, with its 52 week care, therapy, tiny classes and all the rest of the package that will hopefully help 2son transition into a happier person, cost £180,000 per year.

So thank you to all you hard-working people who pay your taxes, and moan about the services you get for them, as I frequently do. To say I appreciate it doesn’t even begin to cover what I feel. He needs this school. I need this school. His brothers need this school. Giving him the chance to grow up and become a full functional adult who can take part in society. That’s where your money is going and I thank you from the bottom of my heart.

Leaving the house

Tags

2son, assessment, CATE, discharge, EP, SEN, son, statement

2son was discharged on the 13th September, over a month ago. Today he has gone to CATE (mini-school) for the first time.

I’m tempted to just leave it there, such is my pleasure that he is out of the house. But I won’t.

He hasn’t left the house since his return until he agreed, via a telephone conversation to meet the EP writing the assessment for the SEN panel who we first met at the discharge meeting. So we met up with the EP and CATE on Friday and had a really good chat about what the options might be, what 2son’s needs were, how they might be met, what was stopping him and what could be done to help him. This EP was really brilliant at just talking to 2son and making it easy to talk back and 2son agreed to try coming in to CATE this week at lunchtime for a couple of hours. He doesn’t have to do any work if he doesn’t want to and he said he didn’t want to meet up with the other children but HE HAS LEFT THE HOUSE.

He may not go back tomorrow, who knows. But he has gone today and that is spectacular.

He spent the first two weeks up all night and asleep all day. I did point out to him that he either goes back to CATE or residential place will be sought. I don’t know if it was that or other things going on in his mind but he reversed himself two thirds so was getting up at 5 in the morning and going to bed around tea time. He had a week of that and then I started opening the curtains in the front room as otherwise he would stay without daylight all day long. He didn’t resist too much so I kept that up.

The reality is that if the SEN panel agree to draft a statement, the procedure is such that if he were offered any sort of residential place then it wouldn’t happen until January. I have spent the last few weeks getting increasingly worried that 2son was just going to stay in bed until then and no-one would offer any help of any use. The daily visits to assist his travel and getting up have ceased today. It was worth a try but achieved absolutely nothing.

I was beginning to feel doomed, that we were going to repeat the last year and would have to wait for the downhill spiral to continue such that he would go back to hospital before anybody did anything. I’m glad I phoned up the EP to discuss all this as he persuaded 2son to come for a little chat.

I have no expectations for tomorrow but am proud of what 2son’s achieved today.