Exercising restraint.

My young man has got rather into politics.  Democracy was on the school syllabus whilst he was hopping around at home. One Monday, as we joined his class at a local library (no stairs involved) he picked out and brought home a book on British politics. He opened it randomly, read it and asked me what a civil society was, this is what it said "The aspects of social and economic life (primarily voluntary associations and private organisations) that are outside the control of the state. A strong civil society based on a large number and wide variety of private associations and organisations is thought to be the basis for democracy." it also said "it is noticeable that one of the first things dictators do when they come to power is try and get control of voluntary organisations, knowing they are dangerous basis of the struggle for freedom and democracy." 

As if someone was whispering in my ear.

I've started my new job for a local charity that supports parents of children with disabilities.  I'm also going through the process of getting my sons statement transferred to the new EHC plans.  There goes that whisper again.  "So that children and parents can spend more time doing other things"  It took me 11 hours to sit down and re-write my sons plan and I had to do it at the weekend now that I'm working.  My son wasn't happy that I had to shut myself away surrounded by paperwork, guidance and a laptop.  Then I remembered the reporters face and his slicked back hair, tucked in shirt and friendly camera man who was amazed as a Lancaster bomber flew overhead on route to a local airfield. So I looked back at my blog  "Bumped" in 2011 when the government was consulting parents on the SEN reforms.  This document will tell you all about it: (and there's a nice picture of Mr Gove)

http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/eorderingdownload/green-paper-sen.pdf 

Myself and young man appeared briefly on TV talking about our experiences with the old SEN system and how I'd like not to have to fight anymore.  The journo finished off the piece with that line "So that parents and their children can spend more time doing other things" cutting to a scene of myself and my young man playing chess.

All those years ago under the old system it took up two years of my life to get a statement of SEN and the support he needed.  It's been six months so far and we're not there yet, the stress is the same, no different and it already feels like pulling teeth, not quite got to banging head on the wall yet. In the above document it says:

This Green Paper is about all the children and young people in this country who are are disabled, or identified as having a special educational need. It is about their aspirations and their hopes. Their desire to become, like every child and young person, independent and successful in their chosen future, and, to the greatest extent possible, the author of their own life story.

Four years later and the question is has the new system managed to achieve this.  I'm having to exercise restraint. I have to believe that all partners are striving to achieve it and that they are not entrenched in old ways of working and that there has been a culture change. 

My case worker thanked me for all the hard work I'd put into re-writing my sons plan as it was a very difficult task and he had many to write up.  I have some sympathy for him and his colleagues this is new to all of us and everybody seems confused and under resourced. 

My new job is to be a critical friend and it helps me to refer back to that randomly picked part of my sons chosen British Politics book. I have to exercise restraint.  Last week I had four meetings back to back that went like this: parents view, LA's view, parents view and LA's view.  This will hopefully result in partnership working by introducing them to each other and a better outcome for our children.

But it won't stop the whispers.

Don't go saving dinosaurs.

I’ve had hard weeks before but his week I’ve found myself sitting on benches in the woods mumbling to myself and trying to stop the tears.

I hate it when that happens, it’s worrying because I know I’ve got to the point of not coping.

A fractured ankle doesn’t sound too bad does it?  When I drove him away from Youth Club he screamed at me every time we went over the smallest of bumps, he has a high tolerance for pain.  It took a while to get pain relief. We sat in A&E for a while, he was very vocal about the pain, the air was blue in a volatile place.  It’s hard to scold someone that looks like a man who should know better.  Doctors and nurses don’t ask me questions anymore they’re directed to the adult sitting next to me.  Puzzled looks follow.  I explain and everyone feels awkward.  

It’s been three weeks now, leg in plaster, not allowed to put weight on it so he’s hopping around on crutches.  I can’t sweep him up and plonk him on my hip when he gets tired anymore.  When he loses his balance I’m there beside him, behind him and in front of him ready for him to grab on to. So far I’ve not gone over with him.  Co-ordination, concentration and patience were never things that came easily to him.

His classroom is on the 5^th floor and the schools lift has broken, we’re managing two mornings  a week in a downstairs classroom.  I’m home schooling which I’m actually enjoying, that’s a turn up!  I got a new job but I can’t start it just yet, it pays this time too.  It takes us until 11am to get ready, the whole showering, dressing and getting ready routine takes so much longer, it’s usually long but this is quite epic. Then I go off into the woods with the dog leaving him settled for a while.  

I think maybe its exhaustion; physical and mental and frustration that hardly an inch of the day is mine alone.  Time with dog is ok but he’s not great with conversation.  I’m trying to sort out the EHC plan, ha, well actually I’m starring in the mirror saying “I told you so” You need time to chase people and space to talk to them on the phone, that just isn’t happening.  My current role is still pulling at my sleeves and I’m trying to grab a few moments to catch up.  It’s the dates, the meetings, the things that I should be doing and my head just isn’t able to focus because of constant demands.

I’ve been ill too, a cold that I cannot shift and a permanent headache, I wish I could take the day off, drink lemsip and sleep.  Then there are the things I cannot say here that are deep and dark and personal, they don’t step aside to help me cope they are my constant companions.  

It’s world autism awareness week very soon and I should be organising things and sending positive messages, you know -having fun with it. 

Sorry folks it’s on hold.  

But…..there are hundreds of children who have autism that are not in school, who parents are barely coping and get no respite.  This period will end for me, I can see the light.  So if you want to do something for world autism awareness week write to your locally elected representative and tell them that there is not enough provision for children, young people and adults with autism and that you think it’s unacceptable.  Just one little letter with us in mind.  It’s better than signing a petition regarding a dinosaur who presents a program about cars isn’t it? I mean honestly it is.

Old stuff

Recently, well about time really, a fellow parent chucked a load of old paperwork and information back in my direction.  She had taken the reigns for a while but had to stop two years ago due to the system that is SEN being so ridiculous and underfunded that it couldn’t provide an education for her son, and still doesn’t.

Digging through the boxes I found a DVD that dated back to 2008.  I had won a short story competition after launching our local group and we were awarded the opportunity of being filmed talking about what we do. I’m not brave enough to share it on here and it has lots of other people on it too which wouldn’t be fair. I looked totally knackered, older than I do now if that’s possible.  My son would have been 11 then and it was a difficult time.  He was suffering from terrible anxieties, wouldn’t leave the house and his special school was failing him.

I talked a lot in the film about campaigning for change and about trying to improve the situation for individuals with autism and their families by making the powers that be, both locally and in Westminster, aware of the impact of their policies and decisions.  

Now, today, in the wake of the financial crisis and SEN reforms it seems a fruitless endeavour.  We still have a system where parents of children with disabilities need the law and tribunals to ensure that their children get the help that they need.  That’s sick.  Even sicker now as we’ve been telling them how sick their system was and making them aware of the difficulties and despair it’s been causing.  They can no longer say “we didn’t realise”  

So I’m faced with a decision where the hope has been removed.  I can no longer hope that the system will change to improve our lives, that governments will put in sufficient funding to provide the education and therapies that our children need.  You could argue that with the election coming up there is an opportunity for change.  Nah, same old same old, whichever colour you choose.  Local authorities are still blaming the lack of funding that they get from government and government are still blaming local authorities for having enough but not using it wisely.  Do I really want to sit and watch this futile game of tennis continue, backwards and forwards again and again?   What it always boils down to however is the calls for help, the looks of distress and isolation, the mess that the sickest of systems leaves behind.  It would take a cold heart to walk away from that.  I know what our children can achieve with the right support, I see it every day and it amazes me.  

 

Just before Christmas an Educational Psychologist told me that my son would always have difficulties. (the old acceptance card again and I told her I had reached that realisation some time ago) That was her response to my request for Speech and Language therapy to continue to support my son with social interaction and social communication at his college placement in September.  What she was really saying was; “it’s expensive, he’s always going to have difficulties so why bother”.  I could have said “I see your point, ok then forget it.”  I could have rolled the dice and hoped for the best.  If he doesn’t cope it’s probably just as well, he can sit at home for the rest of his life and claim benefits rather than get a qualification, confidence and gainful employment.

The awareness that needs to be spread now is to the families more than ever. To make more parents aware, to silence the misinformation and end the silence of no information.  It may take more time than I have patience for.  Maybe it’s back to work blues but I do feel a little weary and more inclined to spend time enjoying watching my young man flourish and to step away from the battles.  It’s a difficult decision and I've enjoyed the break.