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The elephant in the room

There is a lot of political and media focus on certain carefully framed questions at present in the UK…

  • Why are so many parents keeping their children from attending classroom education?
  • Why are there so many autistic children now compared to in the past?
  • Why are schools having to divert so many resources away from core teaching and into special needs support?
  • Why is there such rising demand for Child and Young Person Mental Health Services?
  • Why are so many young people unable to work and pay taxes?
  • Why are we spending so much on disability and carer benefit support? Why is it so easy to claim……

I will say it again, these are CAREFULLY FRAMED. All designed to support a narrative about the pressure this puts on businesses and hard working taxpayers. It’s like the framed questions and narrative which is being pushed about how immigration is causing unemployment, the lack of affordable housing, the breakdown in communities and public services. As a result many in our society now find themselves very much labelled as problems, a burden on others….

I find myself increasingly feeling at odds with the direction of travel the country is heading in. I guess I’m not the only one increasingly feeling like our voices are being drowned out.

Deep sigh….

In all this, in all the political, press, tv and social media coverage I’m not hearing three issues ever being discussed. I guess because they don’t fit in with the CAREFULLY FRAMED NARRATIVE. The large elephants in the room.

Just how difficult, stressful the process is, just how many hoops you have to jump through to try and claim any sort of financial help, disability and carer support. And when you get that support it is at best mo more than the bare minimum, it is NOT a life of luxury.

Child and Young Persons Mental Health Services are stretched to breaking point. It’s a service that has been cut back and underfunded for years. Huge delays in accessing services, services spread way too thin. Again it’s also a nightmare trying to get a young person registered for these stretched services. In our case it took two and half years. A process designed to discourage use. Far too many miss out on the help and support they badly need.

In the UK, as soon as a young person hits 18 they are signed off the support service. There is no equivalent adult service. With Hawklad his Care Lead wanted to hand him onto another service to continue the support after he reached the age threshold, but there was no service to hand him on to. So he was signed off. Support ended. To the number crunchers and spreadsheet decision makers, he is now classed as FIXED as he has been signed off from support. How many young people, how many families suddenly find themselves with no support, no help, no one to turn to. How many don’t even get the support when they were younger. The question shouldn’t be why are so many young people unable to work, why are so many listed as …… it should be why are we LETTING so many young people and adults DOWN.

Posted on by bereavedandbeingasingleparent · 65 Comments

Finding Popcorn

The very observant amongst you will notice a plant pot which looks remarkably like a drum from a tumble drier. Best and safest use for those which had a habit of catching fire. Ours did get modified to make it less likely to explode (after many months of waiting) then promptly died one day after the new warranty period ran out. So better get some use out of it. So we acquired a large metal plant pot.

Some things are more challenging to find and acquire.

Things like Popcorn. It’s a staple part of our Saturday Night Home Movie Experience. Well it has been until now. At the moment it is like gold dust at the supermarket which is our only real pandemic option. For two weeks it’s been sold out. Maybe it’s become the new currency of the survivalists. Replacing bathroom paper (toilet paper). As a result I suddenly have a real urge to go popcorn hunting. Must be able to find some popcorn somewhere. Must have a rummage.

Another challenge which is far less enticing and attractive is the prospect of trying to get our son to venture past the front gate. So far the tentative attempts have failed. Even just venturing onto the road, just a few paces from the front gate is proving a challenge for him. This won’t be just isolated to this family. So many others will be in a similar position. Trying to deal with these issues largely without any help. Our leader of the opposition party has been pushing the need to address the mental health consequences of the last few months. Sadly our government doesn’t seem to get it. The response seems to be well we have released the lockdown, just go out and act normally. Unfortunately that response is typical of the last 10 years. Mental Health funding has been one of the easy targets for government cutbacks. This has led to untenable waiting lists for some essential children services and worse. Many parts of children and adult support have just disappeared. You can just see the likes of Johnson and Hancock smirking while telling us

If you have the money then you can buy help, if you can’t then tough. It’s your fault for not having massive bank accounts. Let’s think of the real issue. How can we get our hands on the profits from a switch to a US type health care system.

So we will keep trying to take those little steps. Trying to raise awareness of this issue. This is going to be a long and very winding road. Importantly it’s a road which will be driven by our son. He will decide when and where to take those steps. He has to find his own way and be comfortable with it. Today he won’t be going down that road. That’s for another day.

So I will go back to dreaming about popcorn hunting.

Posted on by bereavedandbeingasingleparent · 108 Comments

Ever shrinking world

A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

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Hotel Window

Another cold start. I’m calling it an official three jumper day.

One of those cold starts that as hard as you work out, or regardless of how many warm layers you put on – your still cold.

The first week of schools version of homeschooling has now finished. Some subjects did embrace the opportunity. These offered the child a chance to be creative and to see where their learning interest would take them. Sadly that was not much of the week. Most of the lessons reflected the normal parrot learning teaching approach. What is the point of getting someone with dyslexia to translate page after page of French (without any context or help). What is the point of setting an online spelling test where the spoken words are so rare that I had to look every one up in a dictionary to see if they actually existed.

But he survived. The parent got through it as well. So that’s something.

Whether it was my lack of sleep, the unremittingly grim news or a week of homeschooling but last night I couldn’t get a thought out of my mind. Maybe, just maybe this is our world now. No more holidays. No more new lands. No more Switzerland. Certainly the financial shock of the next few months will take me a number of years to repair the bank balance. Generally travel may become more difficult over the next few years. Aspergers and the fear of social interactions is certainly not going away any time soon. So maybe that’s it with travel.

That’s sad but actually there is more to life than travel. So much to see and visit close by if it comes to that. Anyway we have not had a holiday since 2015 so we are used to it anyway. Doing virtual tours is a fun, safe, environmentally friendly and is so much cheaper. Then a thought crossed my mind. It was inspired by Basil Fawlty (John Cleese) while we watched Fawlty Towers. Basil was getting seriously cheesed off with a guest who was disappointed with the view from the bedroom window.

“Well may I ask what you expected to see out of a Torquay hotel bedroom window? Sydney Opera House perhaps? The Hanging Gardens of Babylon? Herds of wildebeest sweeping majestically”

Actually could we scale the virtual tours up a notch. Why don’t I pick a window with a chair next to it. Then why don’t I stick a poster or large photo over the window glass. Suddenly my view of say the trampoline could be transformed into whatever I fancy. I’ve seen other people do this in the past. So tomorrow I am going poster hunting. Got a couple of belting posters of The Alps to find.. But in the meantime I’m hoping my bedroom window will look something like this.

Posted on by bereavedandbeingasingleparent · 36 Comments

Green and pleasant land.

Welcome to Britain. A green and pleasant land.

A country where this man has just won a massive majority. A man who continues to cover up his repeated cockups which has led to a British Citizen bring help in Iran since 2016. Now his focus is on trade deals and turning the country into a trumped up lap dog. Sadly the poor British Citizen can’t offer a trade deal so she is stuffed.

Where this man from our Government claims that he has more common sense than those who died in the Grenfell Tower Disaster. He has made millions from his hedge fund company on the back of Brexit.

Where this man has been our Schools Minister since 2014. The man responsible for the current state of our schools. The man responsible for the introduction of testing for 4 year old kids. And the man who said kids taking time of for bereavement was like an extended holiday.

And a country where this man has just been awarded a knighthood. A man who introduced sweeping and brutal benefit reforms which has led to unprecedented levels of misery and is probably responsible for the deaths of hundreds who lost benefits.

Britain a green and pleasant land.

*** the photos of these lovely human beings are from The Guardian, Inside Croydon, Yorkshire Post, Change.org

Posted on by bereavedandbeingasingleparent · 34 Comments

Waiting

Every morning we get a scene from Hitchcock’s Birds. Hordes of feathered friends waiting for the me to get my act together. Come on it’s about time we got breakfast. Just remember what happened in The Birds. No cute Angry Birds here….

We watched Angry Birds 2 a few nights back. It’s very funny. Red and Big Terrence are my new role models. The Birds in the Hitchcock movie are just a bit too Deadpool for my liking.

Everyday the garden birds wait and every day it’s worth it. Free, easy and safe food within feet of their nests. So sometimes waiting is worth it.

We finally managed to get our sons Education and Health Care Plan approved a few months after WE lost his mum. I remember a few parents saying well that’s the job done, your quids in now, it’s top class education for your son now. You could feel the sarcasm dripping off the words. Many parents buy into the idea spread by the media that kids with learning disabilities are taking money off their kids education. Schools are short of money because of these privileged kids. And anyway what’s the point – they are just low attainment. So undeserving. Just give the money to the normal kids…..

Welcome to modern, inclusive, caring Britain…..

Thankfully I didn’t assume it was job done. Now the real battle had begun. Trying to get any meaningful support from our factory farming education system. In practice the small level of funding nominally provided to our son effectively bought him a place in a secondary school. Nothing else. The money is put into the school budget for general classroom Teaching Assistants. These Teaching Assistants then are a resource for ALL kids in the class. The Teaching Assistants are not trained in learning disabilities. The school does have one who has experience in the area yet she has never spent anytime with our son. The school does not provide any additional help to kids like our son. It so much easier to label the kids low attainment and do nothing. So we get into a never ending cycle. The media vilify kids with learning disabilities. The government never contradicts these miss truths and the schools continue to do provide any support. The kids fall further behind. The parents pull their hair out.

So we are still waiting. Still waiting for progress. Still fighting battles. Still listening to the campaign of hate promoted by the media. Trying to get any help which might give our kids a chance. Not asking for special treatment. Just an opportunity for a decent education. So many kids are suffering in silence.

Still waiting. But there is now a sobering thought. A thought to take into 2020. Many of the current failings with the school system can be traced directly back to government policy and educational dogma. Ten years of taking schools back to traditional teaching practices. Back to Victorian values. Back to a time of unmitigated suffering for any child not fitting the expected mould. NOW we have 5 more years of this Government. A government proposing an even more stringent traditional approach. But here’s the rub. In 5 years son will be leaving secondary education.

We wait. So we probably will be still waiting in 5 years.

So as we move into 2020 the conclusion is that the school system will will not help kids like our son for many years. It will never help our son. It has and will continue to fail him until he leaves. I’m still trying to get my head round this. We will keep fighting but with little chance of any progress. So we are now in Plan B zone. What is Plan B? I’m not sure yet.

Sometimes waiting is not worth it.

Posted on by bereavedandbeingasingleparent · 88 Comments

People of Blyth

It’s Friday the 13th. It feels like a real horror story in Britain today. A new dawn of terror.

People of Blyth I really hope your decision to vote Conservative works out for you. I really hope Boris Johnson follows through on his promises. He gets Brexit done then finds money to cut taxes and spend more on public services like our health service. Although a Bart Simpson quote comes to mind.

“You just bought another load of crap from the world’s fattest fertilizer salesman.”

To be fair to Blyth I could have picked a number of Northern English Towns and Cities. That includes my childhood home town – Redcar. Or as Johnson has now called it Bluecar. I hope people remember that Redcar is named after an area of poorly drained land. Kjar (Car) is old Viking word for marsh. Maybe Conservative Blue and poor drainage are a suitable combo.. My old Dad always said he would never ever vote Conservative. He must be turning in his grave at a Conservative MP of Redcar.

So we wake up to Boris Johnson as the Prime Minister. I was careful there not to say our or my PM. He certainly is not my PM. He needs to earn that. If he proves himself capable and trustworthy then I will start to call him MY PM. His remit is to get Brexit done. As far as many are concerned that is the a Brexit debate finished. We are now leaving. Leaving hopefully with the best negotiated terms and relationships possible. Although many of his backers want to have the process fail so they can just crash out of the EU without any constraints. I genuinely think it’s the wrong call but we have lost the argument and IT IS WHAT IT IS. We need to move on.

I’m not going to rant at the majority of people who voted Conservative. Your opinions and values are just as valid and heartfelt as mine. I do shake my head at some of the reasons a worryingly large number of people decided to vote on. Ones I have personally heard include

  • I’m not voting Liberal as the leader is a woman,
  • I’m voting for Boris because he is funny,
  • I’m voting for Labour as Gary Neville (ex Footballer) said he was,
  • I’m not voting Labour as they backed the Terrorist who attacked a London Bridge (a fake news story)
  • I’m voting Conservative as they will teach Europe a lesson because they are to blame for our problems.

Simply staggering….

Our political system is broken – probably beyond repair. Increasingly money buys you power. We have political leaders who openly lie and spread unfounded rumours. We have effectively a state sponsored public broadcaster while the other news outlets are in the hands of a few Conservative supporting billionaires. Media groups who openly flout electoral law and favour the incumbent government. Where opposition parties are scrutinised and vilified while at they same time reporters act as a mouth piece for government propaganda. It’s not even subtle anymore. A BBC News reporter days before the election told viewers that Boris Johnson ‘so deserves’ the victory he is hoping to get.

We have potential Russian meddling in our elections. A crucial report on this was buried by the Government a month before the vote. But let’s be fair to Russia it’s not as if the UK or the US have not also interfered in the the affairs of other nation states as well. If we do it why can’t they.

We have a fragmented opposition where the two main players have lost the plot and would much rather fight each other than actually focus on trying to be a credible government in waiting.

We have a ridiculously out of date electoral system that makes it virtually impossible for parties like the Greens to make any headway. Yet it gives huge majorities to a part that gets less than 50% of the vote.

We have a United Kingdom which is literally falling part. As much as Johnson has denied it his Brexit Plan will split Northern Island off from the rest of Britain with a dedicated border control. Scotland now votes in an entirely different direction than England. Scotland voted against Brexit. Scotland votes SNP. How can calls for independence be denied any longer. It’s probably appealing to Boris as he would get rid of a large and vociferous opposition grouping. Locking in a Conservative Government for a generation.

And then we get back to the good people of Blyth and Redcar. A political system which has for years ignored them and failed them. Now we have a hardcore of disillusioned voters who have little faith in their politicians and leaders. No wonder they see Brexit as a way of bringing change.

So we batten down the hatches. Focus on what is truly important – family and friends. Do whatever we can to protect them while doing our bit for the environment. Completely block out the tainted media groups like the BBC which simply cannot be trusted anymore. Find our own news sources. And we move on hoping that things don’t go as badly wrong as I fear. I really fear for minority groups, those who are sick, those who are on benefits, those who are out of work and I am petrified about what will now happen to our environment and wildlife. So ends the rant and now I get back to being a crap dad trying to cope with whatever life chucks at me. Fingers crossed I don’t need to mention Boris again.

Posted on by bereavedandbeingasingleparent · 58 Comments

More rain

And still it rains. And rains. And rains.

And still it rains at school.

French Homework is to complete a crossword. A French Crossword. Marks will be deducted for incorrect spellings.

Dad I can’t even do a crossword in English never mind French. I can remember the sounds but I can’t spell the words. The Teacher knows this but just says I have to try harder.

And we have more…

Drama Homework is to complete an acting related Word Search Game. Really. Very early on his previous school it was identified that he could just not do Word Searches Tables. The Psychologist who looked into this established that for some reason he was not able to visualise letters and collections of letters if they were printed diagonally or backwards. On top of this his dyslexia just made identifying words difficult. As this was stressful for him it was strongly recommended that his education did not use word based games. Fast forward a couple of years and his current school now requires him to do word searches as it’s the set task for the class.

I can see the point of a French Crossword for some kids but how is a dyslexic kid expected to complete this. Has our school system become so inflexible that we can’t just vary the teaching programme a little for each individual child need. Clearly not. The Government is committed to this Factory/Production line model of education. That’s for State Schools. Private Schools have more scope to flex the teaching programme. Unfortunately many can’t afford to go Private. But that won’t bother Boris and his buddies. As long as the chauffeur driven car turns up and the expensive wine keeps coming.

Ok I can see the point of a crossword for French for some BUT… What is the pigging point of a word search for Drama. I guess it’s all part of the Government’s drive to make every kid spell correctly the defined key words. Spelling is given a higher profile that actually understanding what the word means. Maybe I’m wrong. Maybe the best way to develop the next Orlando Bloom, Keira Knightley, Anthony Hopkins, Robin Williams, Whoopi Goldberg and Tom Cruise is to focus on spelling. Oh hang on a minute these have dyslexia as well. So no I don’t see the point.

We just set too many of our kids up to fail. They see other kids repeatedly praised for great spelling or neat handwriting while at the same time they are just told to try harder. How demoralising is that. A phrase you hear often is that kids with learning difficulties have to try super hard just to keep the perceived learning gap from widening. DAMM RIGHT THEY DO. Too many kids are forced through the same stereotyped classroom hoop. Never given a chance to demonstrate their unique skill sets as these are not in the areas deemed valuable by the Government.

Too many kids have been failed by our society. It’s not as if our society is particularly successful or sustainable on the back of this. This has to stop. When it does stop and we start allowing all our kids to grow – just take a few minutes to think how good this world will become. That is a hope worth fighting for. That is a hope worth voting for.

Posted on by bereavedandbeingasingleparent · 69 Comments

Let’s spell out Monday

An entire weekend without seeing any evidence of other humans. No post. No phone calls. No dog walkers. Villagers hidden away in warm dry houses. On the walks not even one passing car or stray rambler. Helps when many of the roads are closed with overrunning roadworks or floods. Great fun in the pouring rain trying to play tennis on the pavement. Very cramped in an area probably not big enough for table tennis.

Sadly the relaxing weekend goes to quickly and dreaded school looms. A temporary change in school bus routes means more strange faces and much larger buses are running. No guarantee when the bus turns up. An absolute nightmare for a kid with Autism. If only that was the only thing.

Another heated discussion with school and the authorities. Both reassuring us that measures have been put in place which ensure compliance with government requirements and allows all kids a fair chance of performing well. Yeh right. Keep the Government happy – Sod the kids in effect…. Clearly certain parties need to lookup the definitions of all and fair. So this weekend our son’s homework basically is all about writing out three times all his spelling mistakes and unclear handwriting attempts. That’s going to expand his mind and boost his confidence!!

Then to cap it off he has to revise for an English Test. The test is an old school Spelling one. Learn 20 words.

Language

Presented

Sherlock

Through

Evidence

It’s the same spelling test for all in the class. No extra time or help for any child. Again maybe it just me and my cabin fever. If it is please just delete this post. But how is this fair. On what planet is this supposed to have any positive impact on any child with dyslexia and autism. Designed to fail AGAIN. For all the required words our son can give definitions for and provide alternative examples of how to use the word correctly in spoken English. But this is not important apparently. Not what school and the government wants. The focus is on getting all kids to just spell by learning parrot fashion a list of predefined words. If you can’t do this then you are low attainment. A failure. A faulty item.

Education is filled with really good, dedicated and caring teachers. Yet they are increasingly told how to teach and to focus on a narrowing range of objectives. Objectives not about the interests of the child. It’s all about Satisfying the Government. The agenda is that money should go to fund tax cuts for the rich rather than on unimportant things like school budgets. To make sure this happens Schools need to follow the tried and tested factory model. Increasingly large production runs which help drive down costs. Eliminate natural variations and reduce choice. Children just seen in terms of inputs and outputs. Push them through the system. Those who don’t fit are labelled a problem and discarded as surplus to requirements.

I will tell you where the staggering stupidity and the real problem lies. It’s in those leaders pushing this dogmatic crap and equally on those who choose to vote for them. Shame on you.

So we move on into another uncertain week filled with too much anxiety for someone so young. Let’s hope a few Muppet and Spider-Man movies can briefly lift the mood. Even a bit of no space tennis might help. But surely the countless thousands of children who suffer deserve so much more than this. The really do.

Posted on by bereavedandbeingasingleparent · 54 Comments

ADHD and Aspergers

Beckies Mental Mess this week has been doing a great job of raising awareness about (ADHD) Attention Deficit Hyperactive Disorder. I’ve just read Rory’s words which explain so well what it’s like to live with ADHD.

From here in this quiet part of Yorkshire ADHD is very much part of our life. It’s now officially part of our sons diagnosis. But it feels very much like a junior version. During the long and ever so frustrating diagnostic process which he went through ADHD was an after thought. It was missed. Never mentioned. Everything was lumped into Aspergers and Dyspraxia.

Then our Paediatrician changed. In his first meeting with our Son he genuinely seemed surprised that he could find no mention of ADHD on the records. A few weeks later it was added to the diagnosis. Why was it missed?

We where made aware that Aspergers in most cases goes hand in hand with other conditions. Everything seems to merge together to give a unique set of symptoms and personality traits. It is often difficult to unpick the individual conditions. Generally Aspergers and Autism are just used as overriding terms to cover a wide and complex set of interrelated issues. In our sons case ADHD was just missed. A specialist went through the original symptoms list. Of the 16 original listed symptoms which were defined as Aspergers related 7 were later changed to ADHD.

As soon as ADHD was on the medical record we were offered medication. Interestingly although our Sons the symptoms had not changed at all suddenly the addition of four letters prompted the option of drugs. We declined. Or should I say Son declined. In his words

ADHD hasn’t changed me. I’m still the same person with Aspergers. It’s just who I am.

Since we declined medication ADHD has never been specifically mentioned again by our Doctors. They have continued to offer behavioural therapy to try and ease the young Aspergers kid into this strange old world. Due to Government cut backs the therapy is becoming increasingly sporadic. Once someone gets past a certain age the health support basically dries up. But at least something happened. From an Education point of view basically no school interventions have occurred. No assessment of educational impact has been carried out. It’s the standard education package for all regardless of any specific needs. It’s so much easier to bracket individual kids as low attainment.

This is the shocking fact in education today. Certainly here in England. Specific educational help to those with a learning disability – some prefer to call it a learning disadvantage – is denied to too many kids in our society. Effectively they are seen as an expensive drain on resources. So much easier to write them off. How do we explain that to our kids. How as a society have we got education so wrong. We need to keep shouting as one day those in charge will listen.