Monday, 31 July 2017

The Dark Side

I went to a festival recently, yes I managed to have 3 whole days away from my caring role whoop, whoop!  Jodrell Bank is an observatory in the amazingly beautiful Cheshire countryside.  I used to pass by it often as a kid when we went to visit cousins up north. I was told that it's radio telescopes sent signals into space and it listened for a response.  So eary, so otherworldly and so mysterious.  So when the chance to camp right under them, dance all weekend to music and learn about space came up, well it couldn't be denied.

Walking back to the tent one evening a friendly fellow struck up conversation with us and said his band was playing before Darth Vaders talk the next day. I mentioned that I went to school with his daughter, for a moment he imagined I had somehow been schooled alongside princess Leia and he got very excited until I mentioned that her name was Rachel and she was very normal and nice. We went to see Darth Vader's talk, he was very sweet, if a little forgetful these days and responded to one little girls question with "Yes Darth Vader does like my little pony" to a huge round of applause.

So we wondered around the observatory and all the stalls and it was full of children and then there it was, a pang I hadn't felt in a very long time.  All these children so fully engaged, making things, carrying out experiments, playing, asking questions and I said to my partner "The boys would have loved this when they were younger" and then I thought and did a reality check and remembered all the trips to science museums, observatories, exhibitions and play activities that we'd just about scrapped through with our nerves in tact. How we'd weathered the looks of disgust from other parents, looks of confusion from other children, broken up fights, made apologies and eventually given up and gone home.  And there it was; the sense of loss and I felt the grief of it all over again.

I meet parents with young children who are going through it and experience it everyday. I once had a bit of an argument at a talk I was giving about the process of acceptance where a parent said that grieving for the child you didn't have was not good for the child so therefore the parent had better suck it up and get on with it.  I disagreed and said I would never deny a parent the validation of their loss and not sit with them in it until they were able to move on. Feeling guilty of greiving well that just adds to the raft of emotions that a parent has to bear.

Back at the festival we headed for the bar to numb it all for a bit and enjoy the rest of the weekend. And we did, Hawkwind were pretty awesome and so was the weather.

Today I read a post about grief and it took me back to that feeling again.  Then I got a message from my son to say he'd failed his grade 8 bass exam and all was dark and gloomy for a while until he came bounding in saying he'd got it wrong and he'd passed. Phew! afternoon of tears and tantrums averted and all was sunshine again.  The he appeared at the patio doors paying his guitar, he was looking at himself in the reflection and admiring his mohawk. I laughed at him and told him he was looking good.  He came in and gleefully told me he had learnt bar chords on the guitar and started to explain to me all about them. I asked a few questions about notes on the fret board and his knowledge just blew me away (and went straight over my head) My son truly is Rainman sometimes, his ability to learn the patterns of notes and scales so quickly is amazing.  He's taught himself guitar in a matter of months, transferring his knowledge from the bass.  He still can't take 10 from 100 though or work out how much things cost.

We may not have had a "normal" life, it may not have been the easiest but I know all there is to know about Battersea Powerstation, all the names of the engines in Thomas the Tank Engine, I can build extrodinary lego models, make a sonic the hedgehog outfit in a matter of hours, complete Luigi's mansion with my eyes closed and give you a tour of the Bluebell Railway. I can also tell you what's its like to be in a minority, battle an unfair system, what should be in each section of an EHC plan (and what should not) and what the inside of number 11 Downing Street and the Houses of Parliament look like. But most crucially I can also tell you to stick with it, to go with it, to sit with it and to never give up because one day, like my day today, it will be absolutely worth it.

Friday, 2 June 2017

A Guilt Trip by Gaslight

Gaslighting is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target's belief.

A guilt trip is a feeling of guilt or responsibility, especially an unjustified one induced by someone else. Creating a guilt trip in another person may be considered to be psychological manipulation in the form of punishment for a perceived transgression. Guilt trips are also considered to be a form of passive aggression.

I know my son has a disability, a professional, fully qualified, employed by the NHS, Clinical Psychologist first broke the news to me when he was 6yrs old. Then a professional, fully qualified, employed by the LA Educational Psychologist said he had SEN that needed supporting via a statement.  Then all of a sudden civil servants employed in an education department in a local authority started telling me that wasn't the case. What eh? But........

"Oh no" they said "You see that type of disability is being over're a single Mum hmmmmm no father around must be a struggle for you to discipline him"

"And the seizures?" I say "Did I cause those as well?"

"what those febrile convulsions" they reply "try not to overheat him, make sure he gets some sunshine......."

No, no I shake it off re read the lengthy reports all the Ed Psych's and Clinical Psychologist have written and go back and tell the civil servants that I want to take the advise of the Psychologists and find a specialist placement for him.
"What's that?  I ask  "No places? All full? So what now? His head teacher said they were damaging him in his current school and that he needs a specialist placement" 

"Well all the special schools are already full of children that really need them." reply the civil servants.

No, no I shake it off and I go and find a specialist independent school and take the civil servants to tribunal. Tribunal - that place where all the very qualified legal people make decisions based on the law, and they said I was right and that he must go to the independent special school.

A few years later and I'm at a parents group meeting other parents who have had a diagnosis of a disability for their child and for some reason one of the civil servants has come to talk to us about how the SEN system works. The parents there tell her that the LA don't have enough special schools and explain how they've had to go the independent schools. She says;

"Do you realize how much independent schools cost?" "This is taxpayers money that you are taking away from other children with disabilities that need services. The trouble with parents like you is that you demand a Rolls Royce service"

The parents hang their heads in shame, except me I know what she's up to. So I raise my head and I say;

"We are tax payers too, I wanted my son to go to a cheaper maintained special school but they were all full. I'm not banging on your door demanding money I just want and education for my son that meets his needs"

The other parents raise their heads.

But no wonder we are all loosing our marbles. This really is an abusive and toxic system. Stories of civil servants telling parents that if they haven't got the evidence then they won't be believed and when they do get the evidence it's an exaggeration in order to appease the parents need for diagnosis for their child rather than face their own failings in parenting..........Terms like psycho social are used as reasons for parents believing their child has difficulties. Labels like Munchhausen by proxy all add to the gaslight.

I got through it..... just. Now I'm facing it all over again with the DWP. Tribunal bundles have arrived and we are just waiting for an appeal date, once again I have to prove  that my son has a disability and needs the support of ESA whilst he is a disabled student not able to claim universal credit or work without support.

We are taken on these trips all for the sake of saving money, cuts and lack of funding. My role and the role of experienced SEN parents is to pull other parents away from the gaslight and off of the guilt trips and show them the truth and how to get justice.

Whoever wins this election needs to understand that this is abusive, this is toxic and this HAS to stop.

Monday, 8 May 2017

The Woman and The Snake

Once apon a time, well actually last week, a woman, who was gardening, came apon a snake.
Not smooth and slipperly but dry and parched on dirt that hadn’t seen a drop of rain for a week.
She picked it up and found a cool and shady place, she sprinkle it with water and splashed it on it’s face. She left it lying in a pool and placed a rock beside it to bask apon when it had had its rest.

Next day, still no rain, she went out to hose the flowers and out of that cool shady place slid the snake, who smiled. Surprised that snakes could smile she smiled back and then it spoke;

“why did you help me?” it asked
“you were almost crispy” she replied “of course I had to help”
“But I’m a snake” it said
“And?” she said puzzled
“I thought you wouldn’t trust me not to bite”
“Why would you do that?” she replied
“Because of that poem”
“What poem?”
“The one about the kind hearted woman who got what she deserved by helping a snake”
“got bitten?”
“Yes, after she’d helped it” replied the snake
“But why would it do that?” asked the woman
“Why wouldn’t it?” said the snake

“Well said the woman, when I was little I was told that snakes were slimy and cold and not very nice but I decided to find out for myself so I went to a petting zoo and asked to hold a snake.  It was warm and smooth and it liked being held. It’s handler told me all about snakes, that snakes only bite to kill what they need to eat or to protect themselves and that not all snakes bite anyway.  Snakes don’t eat people they only eat mice and small creatures.  A snake did once bite my father but that was when he walked into the undergrowth to take a pee, he stepped on the snake and peed on it so that was kind of understandable.  My Dad said it was just like a bee sting and that both of them had lived to tell the tale, he didn’t hate the snake”

“I wish the world had never heard that poem” said the snake “now no one trust us and no one wants us around, they fear us for no reason.  It’s put my friends and family in danger.  Some young snakes are now getting angry about it and have started talking about actually biting people”

“That’s crazy” said the woman
"I know" said the snake, "I hope it doesn't happen"

The snake sat down next the woman and shook its head.  The woman looked at the snake and shook her head. 

“Why doesn’t it rain” asked the snake
“Global warming” replied the woman “But that’s a whole other story…….”


Wednesday, 15 February 2017

Not disabled enough

We currently have two university places on offer to my son.  That is a sentance I never thought I'd ever type.  But it's completely true.  "To be a good bass guitar player you must practice for 4 hours a day" is what it says in my sons bass tuition book. And so he does.  For 4 hours, no more, no less, every day.  For the sake of our sanity we bought one of those cabin things and put it way down at the bottom of the garden, next is the sound proofing.  He sits with ear protectors on and the bass amp up all the way "because I like to feel it Mum" and practices studiously.  His amazing memory means he retains all the informtation which is then cemented in with the continued overlearning he does.

At my sons recent ESA (Employment Support Allowance) assessment, the last question the assessor asked him was to take 10 from 100.  He couldn't do it and refused to answer.  We left with my son calling himself an idiot and reeling from the experience.  The assessor sat in front of his computer, asking each question.  My son didn't understand the questions and the assessor looked puzzled at my sons responses. The assessor looked at me for an interpretation but I refused, he was there to assess my sons ability to function without support. All I explained to him was that my son has difficulty understanding complex verbal questions due to receptive language difficulties which is part of his Autism and perhaps if he thought about wording his questions differently it might help.

Due to a broken heart, my son was dreading Valentines Day this year  (he's considering The Undateables)   I was dreading it too as it was assessment result day. I was laying out my sons clothes for the day and cleaning the bathroom up after him when my phone rang.  "unfortunately your son does not qualify to continue to receive ESA"  Apparently you need to "score" 15 points at the assessment to qualify, my son somehow scored nil point. So no more ESA and no Mr DWP he can't get universal credit as he's still in full time education and yes heading towards University.

I am beginning to feel like all my knowlege and all the professional assessments of my son are worthless.  I am still waiting for an updated EHC plan from our SEN department, nothing I seem to say has any impact and is ignored.  The lack of support at college recently led to a huge meltdown which his father experienced for the first time.  It shook their relationship and both are dealing with the fallout of it.  The college are now being supportive and putting in as much 1to1 staffing as they can afford.  They are not a specialist college but have a general ethos of tolerance and understanding towards difference. He will hopefully now be better able to cope because of the support they have put in place and the understanding he gets. So why does the DWP think these are things he won't need in the work place???

Unless the DWP or the employer are prepared to put support in place the chances of failure in the workplace are huge.  I can confidently say this because I've been the one that's had to pick up the pieces and fight for support for him for the last 13yrs.  But right now I don't feel like anyone believes me.  I've made it all up in order for my son to get 50 quid a week.  Scrounger, benefit monkey, fraud, lazy etc etc are all the things I feel myself and my son are being labelled right now.  Perhaps I should just step away, withdraw my support, stop fighting and let the system take over.  George Osborne and Ian Duncan Smiths great vision was to empower disabled people into work.  Maybe I should let them take the reigns and empower my son, anyone got their number?

Meanwhile this sketch is the only way I can explain the system to my son, its visual so it helps.


Friday, 9 December 2016

Got to pick a pocket or two......

I’ve gone all Dickensian with possible pneumonia!  I know it’s not unheard of in this day and age as a friend of mine who also has a son with ASD had it a few years ago, it ended in Pleurisy – not heard that one for a while! I’m really not after reams of “get well soon” or “poor you” we all get sick this time of year.  The dog is constantly with me being all concerned, not sure if it’s more about the possibility of his next meal being at risk or my wellbeing but at least he’s trying.

I guess we all go a bit Dickensian this time of year, thinking of Christmas, good will to all men and all the poor and lonely.  I know the DWP do as I’ve just received my sons Personal Independent Payment forms and have to return them by 28th December so that they don’t stop paying him. Merry Christmas!   I’ve also recently completed their fitness for work forms for his Employment Support Allowance and am awaiting a decision as to whether he’ll have to attend an assessment. (oh and btw DWP your envelopes are not fit for work as I couldn't fit all the evidence in, see photo below)  He’ll probably have to have an assessment for his Personal Independent Payments too.  Then there’s the Local Authority and I’m still awaiting a draft amended Education and Health Care Plan from last June from them to see if additional funding for him will be available for the rest of this educational year and next.  I’ve made enquiries about an independent Educational Psychology assessment for this as it is likely that the LA will try and cease the EHC plan saying now he’s 19 there is no longer an educational requirement for one.

A couple of months ago the DWP stopped my sons ESA payments saying that they had not received his latest doctors certificate, which I knew I had sent.  They tried to tell me they hadn’t received it and that we’d have to make a new application (which can take weeks). I refused. They looked into it and finally admitted that they had received it but it had been deleted off of their system in error.  The payments were reinstated and back dated. 

The same week the Local Authority then tried to tell me that they had sent a final amended EHC plan back in June.  When I told them that they hadn’t as I had not received a draft, sent back my amendments or accepted a final plan they rang back and told me it was an error and that they were looking at last year’s records.

Cock up or conspiracy? Hmmm you can make your own judgment on that but here’s the reality; My son needs financial support, he’s unable to get a Saturday or part time work, as his peers do, because no one will employ him and its very likely that without the right support he would struggle even if they did.  We have to prove that to the DWP.  Thank God I’m here to help him, if he was on his own he would have been left without payment a few months ago.  No food, no money for travel to college and where the hell would he live?  Without support in his college placement he would not be able to cope with the academic part of the course or keep up with the Maths and English that the government insists be part of his course, in short he would fail.

So the new year brings a possible onslaught of 3 lots of  assessments where he’ll have to talk about his difficulties, what he can’t do, what he needs help with and why he can’t function like the rest of us.  I do not know what the impact on his self esteem will be but I know I’ll have to be with him all the way riding the waves of hopelessness that he’ll feel.

Yes I want him to be financially independent, so does he, yes I want him to make it to Uni to study Bass guitar, so does he and yes I would like to see him living by himself and looking after himself, so does he.  But he can’t do it without support.  He has a diagnosis of Autism, for that there is no cure.  He will always need support. 

Oh and incidentally I’ve just had a call from my partner saying that we have to pay for my sons prescriptions now.  How would he do that if he had no money??

I do not want to fiddle the system, get whatever I can or bleed it dry for all eternity.  So DWP I hope the ghost of Christmas past, Christmas present and Christmas future come to visit, most of all Christmas future.  We are not Dickensian.  People have died, people are dying and people will die whilst waiting for your decisions and being on the receiving end of your cock ups. 

So if you’ve got to pick a pocket or two choose someone whose pockets are full.  Oh and stop bloody consulting with us, you know how it is, now do something about it.  I’m tired of talking.  In fact I’m just bloody tired. 


Saturday, 20 August 2016

Peter and Paul

"Robbing Peter to pay Paul" That's what the news presenter said about the cuts to the Paralympics in Rio.  To make the mainstream Olympics super special or maybe just fit for purpose they robbed the Paralympic pot.  Poor old Peter, still never mind eh its not like he's not used to it. Some might even say poor old disadvantaged Peter, how awful to do that to the disabled folk, at least they'll still be able to have a go, that's the main thing.

Back in 2012 we hot footed it to Spain during the Olympics, I was a bit of a conscientious objector.  With the cuts hitting services so deeply and in the midst of a recession it just felt wrong to me to be spending so much money on it all.  I have to say I regret that a bit now, everybody seemed to be having a ball whilst we were away but we did make it back for the Paralympics.  I watched and so did my son.

My son loves football, he wanted to be very much like his younger step brother and play in a team, win matches and be part of a club.  I found a disability football club but he wasn't interested as he thought being disabled and playing disability football was "less than".  We managed to get him into a mainstream club as a goal keeper, it didn't go well.  I stood on the side lines in the pouring rain watching him let in 15 goals and be hated by the rest of the team.  He felt utterly crap about himself.  It was a hard time.  I kept telling him that his disability meant he had to be more determined, work 10 times harder and that he should be incredibly proud.  He didn't believe me.  Then we watched the 2012 Paralympics. Then he got it.  He watched in amazement at the achievements these athletes made and listened to the stories they told of how hard they'd worked.  He started to feel proud of having a disability.  That helped him turn a corner.  He joined the amazing Football for All disability league, playing firstly for Sutton Eagles then Wandgas.  Him and his team recently made it to the finals of the FA peoples cup.  They were beaten by big, huge men on crutches, they didn't expect them to move so fast!!

Myself and my partner became massive fans of "The Last Leg" what a breath of fresh air that was. "You mean disabled people can do cutting satirical comedy"  "They can have an opinion" "They can actually do it better than us!" The 2012 Paralympics gave so much to people with disabilities, not just the opportunity to boo George Osbourne.  It made them present, the mainstream finally noticed and took part with them. A massive step towards inclusion and acceptance.

But now this..........Urgh. I'm not seeing much on social media about it, no one is raising their fist, shouting from the rooftops at how outrageously unfair and unjust it is that the Paralympics is being given "less than".  In 2012 the Paralympians were not at a disadvantage due to their disability, oh no, they were given the same as their fellow Olympians and that is how equality works.

During the last year I've been trying to help improve services within my Local Area with the help of a very vocal, fantastic group of parents.  We've sat and we're heard "but there is no money" over and over and over again.  Now just imagine Peter and Paul both have a disability, one is affected by their disability differently so needs a different service to the other but the Local Authority only have enough money for one service.  Who robs who?  Or maybe we rob both and give them both half a service?  That's how decisions are being made. Peter and Paul find it hard to get media coverage for their plight, they only make up a small percentage of the voting population so basically, who gives a shit. " Their parents?," "Look just tell their parents, we are giving them the minimum service we can get away with, that's all we have to do.  Compete in Paralympics?????? WTF are you asking for, a Rolls Royce Service, that's tax payers money you know, take what's on offer and be realistic"

Yup that's the general tone and the current situation in Rio is the same.  All the determination, hard work and courage in the world will make you a great athelete but it takes money to show the world how amazing you are. Come on world please take notice this is unjust, unfair and unequal.

Saturday, 9 May 2015

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) 

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.