That’s what it is

Hindsight and regret is so easy to fall back into. We all do it. Especially when you suffer bereavement. I do it. I could fill a War and Peace size book with all the missed opportunities.

  • The deterioration came so quickly that we never had that last proper conversation. The last goodbye. I guess the last chat was about sorting out her laptop for when she came out after the tests.
  • We never got to New Zealand.
  • We didn’t have that family Santa trip to Lapland.
  • We never got to Chile.
  • We never got round to trying for a second child.
  • The trip to Tibet and Nepal eluded us.
  • I never did get round to putting those shelves up which she really wanted.
  • Looking at the Northern Lights together remained unfulfilled.
  • I never got round to getting the clip of our sons first steps off the broken camera and on to the video so my partner could see them.

Plenty of time to do these. So no rush. WRONG.

But as that line goes. That’s what it is. Until someone invents time travel I just can’t change the past. Maybe occasionally in dreams but when you wake up it’s back to the reality. But this misses the big issue. Yes stuff got missed. I occasionally unintentionally messed up (maybe more than occasionally). We didn’t complete our bucket list. BUT just wait a picking moment. Look at the stuff we did.

  • Switzerland lots of times.
  • That first romantic trip to the Lakes.
  • The two mad cats and a savage Hamster.
  • The three trips to Disneyland Paris.
  • Buying our first house.
  • Those trips to France.
  • All those walks on the North Yorkshire Moors.
  • That trip to the Newcastle match when you almost got run over by the Juventus Team Bus and the Police Horse ate my Mars Bar.
  • That winter we got snowed in with 18 inches of snow. Days of snow fun.
  • The trips to the Peak District.
  • That stay in one of Britain’s most haunted buildings.
  • Skinny Dipping in the freezing sea at Anglesey.
  • That week in the Scottish Highlands and that cottage next to the grave yard.
  • That walk up Snowdon.
  • That mad evening at a Blues Brothers New Years Eve Dance.
  • The trip to the French Grand Prix
  • That week in the Gypsy Cottage In Northumberland.
  • The concerts. Even Ronan Keating – twice.
  • Getting to see some of the Olympics events.
  • Producing our beautiful son. The single most perfect we both ever did.

Too many great memories to mention here. That’s the stuff I should be focusing on. The memories which should be on permanent replay. You know what – we had a hell of a ride. That’s what it is. Thank you.

Scene Cuts

Thank you to Jay-Lyn (The Wonderful and Wacky World of One Single Mum) for the Scene Cut Challenge.

This week it’s Horror.

Fortunately it’s not about this particularly unpleasant monster.

Scene Cuts is Rory’s (A Guy Called Bloke) great idea. It’s all about the love of movies. What are our favourite movie clips.

GUIDELINES: SCENE CUTS!

  • SELECT THREE FILM CLIPS FROM THE MOVIES GENRE OF THE DAY
  • THANK THE SELECTOR
  • SELECT 3 READERS TO TAKE PART IN SCENE CUTS

DOESN’T GET MUCH SIMPLER THAN THAT DOES IT ……

So it’s Horror clip time.

An American Werewolf in London

Should be renamed AN AMERICAN WEREWOLF IN LONDON BUT THE ONLY SCARY BIT IS SET IN YORKSHIRE YA BIG SOFT SOUTHERNERS ….

As Yorkshire is too scary they had to get Wales to stand in and pretend to be a more family friendly version of our county for the movie.

The Moors Clip

Shaun of the Dead

This clip proves you can make Zombies funny.

The Record Clip

Dracula

One clip had to be an old Hammer Movie. And it had to include Peter Cushion and Christopher Lee.

Dracula death scene

Nominations

Going to open this up to everyone. If you fancy a go just remember to tag in Rory.

Silverback

Must cut my grass…..

One of those days where you line up a full day of work and then son wakes up with a temperature…. One too many coughs and he’s off sick. One too many sneezes and he’s contaminated me. Deep joy.

Still a day off from school will delay yet another bust up with the teachers. Maybe get my stress levels down to just below meltdown level.

In one subject last year he had a great teacher who seemed to get dyslexia. At the Parent Evenings she would tell us that in her opinion our son was as good as anyone in the subject in the school. She would say ok he struggles to write the knowledge down on paper – but we can find ways round that to suit him. It was refreshing to hear a teacher say that the key thing is the actual subject matter not the written English – that’s got its own subject anyway.

Unfortunately that teacher left. The replacement teacher seems to follow the school line. Neat handwriting and spelling come first, subject matter second. So now son is seen as low attainment in the subject. This terms homework project requires many pages of handwritten essay work. Points will be given for the quality of the presentation and points lost for things like spelling mistakes. So kids with dyslexia who struggle to write are being set up to fail. The school must know what a huge disadvantage this places on some kids. Oh I forgot – those kids are low attainment so it just proves the point. That’s modern education in England.

So once again I go through the finances to see if I can find a way to homeschool. Once again I fail. It’s at times like this that I feel so frustrated as a parent. It’s like constantly wading through treacle. Every step forward is such an effort. I’m so knackered – lord only knows what our son feels like. Everything seems to be stacked up against us. But sadly I bet if you asked virtually every parent and child dealing with a learning disability then they will say the same thing. It’s a never ending slog. And like all these wonderful parents and kids – we fight on. We love a quote which is maybe from Einstein, but if it isn’t, then it’s still a belter.

“Everyone is a genius. But if you judge a fish by it’s ability to climb a tree, it will live it’s whole life believing that it is stupid”

Or the other belter which comes from Spongebob.

“Patrick, you’re a genius!”

“Yeah, I get called that a lot.”

“What? A genius?”

“No, Patrick.”

Talking about genius. Then there is our sons Dad. I’ve been struggling with a Rhomboid injury. I had the bright idea of strapping it up with kinesiology tape. First of all – what a stupid place to put a muscle group. When you don’t have a partner – how in all that is holly am I supposed to get my hands back there… Then having dislocated my shoulders just enough to get my hands next to the Rhomboid I somehow need to attach this super sticky tape neatly across my shoulder blades. With a physio it’s a piece of cake. In my case think disaster. So several strips went on in the wrong place, creased or just badly twisted. But here’s the final insult. Now these useless attempts need to come off. Where in the instructions does it say in big letters – whatever you do if you have a back as hairy as a Silverback Gorilla on no account buy this tape. And if you are stupid enough to apply it to hair then change your name to Mr Stupid from Stupidville.

That’s me and my postal address.

The Golden Ticket

It’s amazing what you come across on a daily basis. You get good discoveries that just make you go ‘wow’. The ones you can look at for ages and get a sense of wonder.

Then you get other discoveries which make you go ‘wow’ for entirely different reasons.

Today I came across a headline in one of our so called better newspaper – The Times.

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Pupils lose out as £400m schools funding diverted to special needs

Children have been losing out because millions of pounds earmarked for their education has been siphoned off to pay for special needs education, an investigation by The Times has found.

A surge in pupils categorised as having special needs has led schools to lay off staff, increase class sizes and cut back on subjects as councils raid mainstream education budgets to fund support for them.

One headteacher said that the funding reforms introduced in 2014 created a new education, health and care plans that were seen by some parents as golden tickets”

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Don’t try to read the article as you have to pay Murdock for the pleasure. No free news here. Where do we start with this article from the Rupert Murdock stable.

  • Am I missing the point here but surely SEND (Special Educational Needs and Disability) kids are pupils as well. My son is a pupil surely. Not according to this newspaper. Clearly The Times would like to scrap inclusion and go back to the good old days where too many kids where denied the opportunity of mainstream education. The Times journalists have an underlying principle to most of its commentaries. Well if I don’t need that support so why should we be paying for it.
  • This article is likely to cause some parents to start resenting and blaming SEND kids for school problems. It’s pouring fuel on the fire of resentment and bullying. Basically what this article is saying is the those SEND kids are robbing Normal kids. It is deeply irresponsible and distasteful journalism.
  • The article doesn’t mention the 1500 SEND kids who are unable to find a mainstream school that will accept them. But it according to this journalist – that doesn’t matter as they are not pupils.
  • Blaming SEND kids for the £400m short fall in school budgets is lamentable. Clearly according to The Times this countries crisis in class sizes and falling teacher numbers is purely down to SEN kids. Let’s not mention that school budgets have been severely squeezed as a directly consequence of Government funding cuts. Let’s not mention that this Government introduced a new assessment system but refused to fund that change, That’s the very Government this newspaper supports whole heartedly.
  • This country has had a crisis in SEND school funding for years. It is chronically underfunded, it has always been chronically underfunded. Recently it has been subject to further Government cuts. No mention of that then.
  • A surge in pupils categorised as having special needs. It makes it sound as if suddenly parents are inventing SEND symptoms. This country has an estimated 350000 kids with a learning disability. Most experts say this is a fraction of the actual number. So many kids go through education without having a learning disability diagnosed. For too many years we have failed to address this educational crisis. This is going to get worse as a direct consequence of Government Policy as the criteria for SEND diagnosis is becoming stricter – purely to save money and not based on any health grounds. This is at the same time that funding cuts are resulting in longer wait times for an actual diagnosis to take place.
  • Finally ‘a golden ticket’. Really. In our case it’s the reverse of the article. The funding which has been awarded to our son for his learning disabilities is being used to part fund Teaching Assistant support for the whole school. The article also fails to reference that most SEND parents are already paying for additional care and educational support. This so called Golden Ticket only covers a fraction of the true cost of support.

Once again journalism gives us an insight into the deep rooted problems we have in society. The media reflects the current views of our so called Governments. It shows how far we have to go. How difficult this fight is going to be. I will leave the last word to my old Dad. He would call The Times ‘excellent toilet paper’. Thats all its good for.

To my American Friend

I had a lovely email from a fine American chap. Thank you so much for taking the time to write personally to me. It was most entertaining – best laugh of the day so far. Unfortunately I didn’t get round to responding to you for some reason. I accidentally deleted your email. I think your a big fan of my blog. I don’t usually get the following gushing complements.

Effing Commie

Full of liberal bullshit lies

Keep your dumb motherf****** Limie views to yourself

I think you took great offence at one of my comments about your precious President. I wonder if it was when I compared him to a pumpkin. Or maybe it was calling his precious wall – stupid. Or maybe it was thinking I had seen this hairstyle somewhere before.

So to my American friend I must do another commie post real soon here. Don’t tell anyone but I’ve just done a guest post on another site which I’m sure you will agree with. I think I compared your leader to Nero.

But in the meantime here are a couple of Bernie Sanders quotes I’m sure you will love.

“And let me make the radical statement that I don’t believe that you can say something profound in the 140 characters that make up a tweet”

“You’ve got the top 400 Americans owning more wealth than the bottom 150 million Americans. Most folks do not think that is right.

Yorkshire Chilli

After years of trying to grow just one chilli in the subtropical climate which is Yorkshire we get to this. In about 10 years this is as good as it gets. Two huge Guinness Book of Record Largest Chilli winners. But after all the years of failure I will take these mini wins.

The one thing you learn with bereavement is that every persons grief journey is different. Regardless of what the textbooks tell you ITS UP TO YOU to find your own route through the minefields you find yourself stuck in the middle of. Some can do it within months. Others it takes longer, sometimes much longer.

I was listening to a bereaved man on the radio. He had starting dating again within a couple of months of the funeral. He was remarried within 6 months. In his words he had ‘grieved for about 6 weeks then it was time to start again”. When asked if he still grieved he said ‘No I have moved on’. That was his way through and out of the minefields.

One of the saddest and most beautiful things I have ever heard was an elderly chap who had lost his wife. Every wedding anniversary he took his wife’s ashes out to the same restaurant. He would sit and have his meal alone with the ashes. Nobody knows what he would say but he frequently cried. He’s been doing that for over 20 years. Maybe that’s someone who has chosen not to leave the minefield.

I’ve been in the grief minefield for 3 years now. But that’s only part of the story. No real time to grieve as I had to step up to being a single parent. I needed (still need) to give our son the best possible childhood he could possibly have under these circumstances. In my brain parenting became more important than grieving. My way out of the minefield frequently became muddled and lost . What happened was often parenting driven rather than grief oriented. For example.

Three years of virtually no social contact happened not because of grief rather because of having a young kid with Aspergers.

In those three years my not so great social skills have become extremely limited.

Last week I had a lunchtime coffee with four of the mums from our sons school. I’ve done that a couple of times over the last 3 years. It’s only for 30 minutes or so. In my case it’s now Peppermint Tea rather than Coffee. It’s about my only non-son social life these days, certainly since the world changed. Talk about wooden. I end up just listening. Luckily the mums are really nice and I think they understand. It’s a start. A little dip of the toe back into the big bad world. It’s a mini win. At least I’m not still in the middle of the minefield.

So like the chilli in Yorkshire. I will take the little wins. I think it shows that I probably want to make my way out of the minefield eventually but I have to admit – I’m not entirely certain about that….

Swiss Sunday

It’s time for another little bit of that wonderful country called Switzerland. For us it has so many memory gems. Every photo seems to yield another beautiful memory.

The damp Sunday morning boat trip across a Lake. All the passengers are outside in the drizzle just enjoying rainbows across the water.

The Gorge walk with the milky river.

The walk round a vineyard with views to die for.

The late evening stroll around the Lake and as the sun starts to set the mountains come alive.

The early morning coffee sat watching the sun rise above the Alps.

And we can’t leave out the cows and the hypnotic sound of the bells. Switzerland is one of the most precious gems of them all.

The Forgotten – Part 1

We were sat watching some YouTube videos of TV shows Rory (A Guy Called Bloke) had listed under Sitcoms suddenly morphed into another excuse to watch my favourite programmes.

Dad you do know most of the stuff you like on TV will mean nothing to most people. They will just look blankly at you. The worry is that I have part of your DNA. Thanks….

So it’s time to enlighten the world. Well a really small part of it…

The Indestructible Captain Scarlet trying to defeat his nemesis Captain Black and the Evil Mysterons. My favourite show ever. With strings or the much later expensive version. WE NEED A CAPTAIN SCARLET MOVIE.

Hectors House. The grumpy dog with a hunting gun.

With the earth under attack from aliens we need to respond with the coolest defenders ever. It’s got to be UFO.

Think Star Wars without the special effects or the humour. Think Star Wars without a budget. I give you Blake 7.

Bearded puppets with attitude means Michael Bentine’s Potty Time.

Magicians shouting ‘Size of an Elephant’, a scary letter box and a show dripping of awesomeness. It’s The Banana Splits.

Monty Python meets the stories of our dreams (or nightmares). One of the funniest TV shows ever. It’s Ripping Yarns.

Not Great anymore

Donald Trumps Wall appears to have started in Yorkshire. Here it’s probably to separate the privileged few from the many.

In my country professions like Teaching, Policing, Nursing, Clinical Specialties once we’re highly respected. This respect was reflected in pay and pensions. Unfortunately times have changed. Or should I say Government Priorities have changed. The argument was that low taxes was the new king. Low taxes on the rich and the money generators started to dictate thinking. The Government started to pick fights with various professions. A deliberate attempt was made to erode public confidence in areas like teaching, health and policing. Then the money generators messed up and we had the financial crisis. Suddenly austerity was needed. But again it was austerity for the many while protecting the few. So the Many and the Public Sector took the hit.

Government introduced competition into all areas. Suddenly contracts were awarded on best value for money. Best value rapidly became defined as the cheapest. As a result the workload on services increased. Quality levels dropped. Providers repeatedly changed. Unfortunately on top of this the pay and pensions of hard working professionals were also squeezed.

When people find their wages and pensions squeezed three things can happen

  • They buckle down for less money but their standard of living is eroded,
  • They become disillusioned,
  • They leave the job.

The Government trots out the argument about the cosy public sector life. The country will be better when everyone works in the good old private sector. Let’s not forget that our Prime Minister said of his own position

‘My Cabinet Ministers salary of £141,000 is not enough for me to live on’

When he said those wise words he was living in his rent free £20M Ministerial Mansion…. one rule for the few and a completely different rule for the rest of us.

A kid with Autism needs above all stability. Continuity in care. Trust is a commodity which takes along time to develop. But those key qualities have been destroyed by Government Policy. This year every single Teacher and Teaching Assistant changed for our Son. We have had to start again trying to build up the so important knowledge base of his particular educational needs. His Paediatric Care Provider has changed and we wait for his new clinicians. Wait is the buzz word. Appointments have gone from 4 times a year to twice a year to once a year. Not sure what the definition for a Year is. We recently received a letter saying that due to the change of provider the next appointment will be significantly delayed. He has had the same Physio for 4 years. But she quit her role. Then the next Physio left after one session. Another Physio then left before the first session. Currently we are waiting another a Physio to be appointed. He had access to a brilliant Clinical Psychologist but she retired and was never replaced. He started work with a Speech Expert but after 2 months she left the profession and the service was cut. He started a programme to work on his optical muscles but the service was cancelled with responsibility passed over to Education. Education refuses to provide that programme. I could go on…

So while our PM moans about his falling living standards the many are picking up the pieces. That’s modern Britain. It’s not Great Britain anymore. It’s certainly not great if you are not one of the Few. And it’s certainly not Great if you are a kid with Autism.

Sensory overload

There is a scene from the 2009 Sherlock Holmes movie. Sherlock is in the restaurant waiting for Watson and his fiancée. You see him people watching. But quickly the noise and the images overwhelm him and he closes his eyes to shut out the world. Too much for him. Sensory overload.

It’s one of the few times I’ve seen this depicted on screen. It’s a problem for so many in our society. Yet it’s an often overlooked element of autism.

Imagine every time you go shopping, or sit in a classroom, or walk in a busy street or sit on an aeroplane or cross the road …. you get hit with this sensory overload. Too many different noises, too many images, too many smells, just too many sensations. Your brain just can’t process them. It can cause anxiety, confusion, anger, blurred vision, a meltdown or it may just hurt a lot.

Son has suffered with this. I’ve suffered with this.

Sometimes it’s easy to spot those potential sensory vortexes. Places with lots of people in a confined space. Various noise sources. Complex lighting. But often it can be more subtle situations which can produce the dreaded vortex.

  • Bright colours and certain patterns. The wrong type of wallpaper. A vivid unusual designed piece of clothing.
  • Where you try and process a number of facial expressions or different types of body language at the same time. A school corridor.
  • An unusual or striking taste sensation.
  • An unpleasant touch sensation. The wrong type of sock or glove. With me it’s often the feel of cold metal.
  • Trying to listen to a conversation where a number of people are trying to talk at the same time.

Over time you learn which environments will cause the issues and you start to avoid them. That’s potentially one of the reasons some with autism seek isolation and a private lifestyle.

Our son had started to develop his own defence strategies. One of his most effective ones is dreaming. When the environmental factors start to become unpleasant or unsettling he will often dream. Create a world he can fully control. This helps him shut out many of sensory inputs trying to overload him. You will often see him flapping or stimming during this process. He doesn’t completely shut out the entire world. He can keep track of certain inputs. You will see him dreaming but at the same time he is scanning a conversation or a teacher talking. As a kid I would do something similar when the anxiety started to kick in. Suddenly you feel your back in control again. Unfortunately I was not as good at keeping track of what the teacher was saying – my school reports often mentioned I was a day dreamer and needed to try harder.

Unfortunately as a society we are just not geared up to understand these issues. If you don’t conform to the required standards then you are labelled different. A problem. Most schools give little thought to how they design a classroom and no thought to what goes on the walls. But this can have such a huge impact. A psychologist told me this true story.

A young girl struggled to concentrate in the classroom. She was unable to read at school or in the home. She was written off as low attainment with behavioural issues. Then she was referred to a specialist who asked school to try and teach her in a different location with plain walls. The only room available was a little empty storage room under the stairs. Unbelievably the girl suddenly started to read in the store room.

The problem was that the classroom had a bright patterned wall which overloaded the girls senses. Every room in her home had complex patterned wallpaper. Quickly her parents redecorated the house with one colour paint. Unfortunately her school did not change the classroom so the girl would go to read in the storeroom.

We are seeing progress. For example some stores are starting to run autism friendly shopping slots. We went to one. The shop had turned down the lighting. Switched off the PA and music. Staff wore white shirts. Some of the bright coloured walls were covered over. The store controlled how many people entered the store. It worked and made such a difference.

As a society we have failed too many for far too long. We need to stop being so judgemental about those who don’t fit into the narrow accepted standards. We also need to have a long hard look at how we design our public buildings and homes. Let’s start to make a difference.