Kick the wall type of day

Spending time near water can be so relaxing. Today felt like I needed to be submerged right in the middle of this river. Stood on the banks probably wouldn’t bring my BP down much below 5000. Yesterday was a kick the wall type of day. Even today my BP is probably 250 points higher than my IQ.

You plan to work from home but that’s the day BT decides to turn off the broadband. You then decide to drive to work but then find out that’s the day the Council decides to close ALL THE roads leading to it. Aargh…

You drive to the supermarket to find it was as empty as my wallet. When I say empty it had plenty of items as long as they were not on my shopping list. Shopping for someone with Aspergers often revolves round a small range of food items. If the food is not quite right then he won’t touch it. Today the only pasta, soup, pizza and sausages he likes were frustratingly missing. The upcoming weeks menu for our son has suddenly become even less varied (if that is possible).

Then we come to my menu. You try to go healthy. You try to go environmentally friendly. The key phrase is ‘you try’. In my case that is meat free, dairy free, gluten free, soya free. In a supermarket of 32 aisles my shopping area constitutes no more than one quarter of one aisle. At best it’s a very limited range of products. Today most of that small portion of an aisle was empty. When I asked the ‘shoppers champion’ (title on badge) helpfully said

“It’s becoming really popular so we run out normally in the middle of the week”

Well order more stock and why not give just a bit more of your shop to this really popular range…. While I’m at it let’s vent some more. If I am eating healthier (as the government wants me to) and I’m buying more environmentally friendly items. Why am I being penalised for it. Why are these products so bloody expensive. How can they justify charging £2.50 for a small loaf of gluten free bread. Why are all the ‘healthy and socially good’ products three times the price of the bad ones….. Aargh….

You rush back home so you are in plenty of time for an afternoon delivery only to find a note pushed through the letter box. Unfortunately you were not in when we called at 9.45am. You will need to collect the item from you local delivery depot. When is 9.45am an afternoon delivery AND how is a 25 mile trip to the LOCAL PIGGING Depot defined as local. Aargh…

You then venture into the utility room to put on a wash when your faced with a waste spillage even BP and Exxon would be proud of. Why has the big fat boy cat suddenly decided to use his litter tray sideways rather rather long ways. He’s a big fella and using the tray sideways means he now misses by over 1ft. Aargh…

Then you get a phone call from the bank. One of my cheques bounced. Why. Apparently the other bank wanted .00 adding to the total I had wrote on the cheque. It was a round number so why do I need that. Aargh…

Then we come to the main event. Already my blood is boiling.

I was getting sons Games Kit ready for the next day. Like most school things you have a prescriptive list of items. Any variations from the list gets the child an automatic negative. Only one light blue football sock could be found….

Son wasn’t sure if he brought it home or had left it at school. We ransacked the house to no avail. With every passing minute son is getting more upset and my BP has gone to Green Rage Hulk levels. Not angry at son angry with life in general. Then a great idea we have 40 minutes to get to the nearest sport shop. Some frantic driving and we get there just in time. The shop has an extensive football range. Every colour sock going EXCEPT Light blue… Normal blue would be a school negative (as it’s not the official colours). Ask the shop assistant. “Yes we have some light blue behind the counter”. At last we catch a break….

“We only have two in stock and I’m afraid they might be a bit small for him”. If it’s tight don’t worry. “Both are 5-6 Year Old size”. Bloody hell… Aargh.

So that was that. Son was sent into school with some royal blue footy socks and a note pleading our case. But the damage was done. I spent most of the night and early morning trying to calm our sons anxiety meltdown. A meltdown caused by one missing light blue sock. It sounds trivia but it isn’t. On that night it was the single worst worry one particular kid with Aspergers could have. Caused by petty school rules.

So yesterday was officially a kick the wall type of day. To the outsider it’s all mundane stuff. No internet. A few road closures. No expensive hippy food. A missed delivery. A cat missing the target. A cheque which needs amending. AND a light blue sock. But to me it was a massive pain in the bootocks….

Spark an Interest

York Minster is one of Europe’s finest Cathedrals.

The central tower is 235ft (72m) tall. It’s Northern Europe’s biggest Gothic Cathedral.

The first religious building was built on this site in 637AD. Work started on the current Gothic structure in 1230 and was completed in 1472. The Minster has 128 stained glass windows which apparently have 2000000 individual glass pieces. It’s a busy place of worship with over 1600 services each year.

Thankfully York has not succumbed to the plague of high rise buildings. So The Minster still dominates the city view from all directions. I remember having a chat with an American work colleague who on visiting the city for the first time told me

“That’s a lovely church but it would have been better if they had built it on a hill”

Unfortunately the nearest hill is about 15 miles away. Strangely our little bungalow is on that very hill. We struggle to fill our little church so I’m pretty sure a Cathedral would be bit of over kill.

It’s absolutely stunning inside but we never make it that far. Son loves to walk round it and think. Then he looks to the skies for a glimpse of the nesting Peregrine Falcons. Finally we always end at a statue of a Roman Emperor. In 306AD Constantious died in York. The soldiers in York immediately proclaimed Constantine the Emperor. So for a brief moment in time York was the centre of the Roman Empire. Son loves to drink up this history.

Surely when you have such history on your doorstep why not use. York has the largest Train Museum in the World showcasing engineering and invention at its finest. What better way to spark an interest. To learn. To grow. But apparently this is not the case. It would seem writing out spelling mistakes 3 times is the way to go. Regardless of the subject – Science, History, Maths, Design Technology, Drama – let’s just get the spelling right. I bet that will spark an interest!!!!

Little things

A beautiful little thing from warmer months.

Unfortunately many little things are not so enjoyable.

Little things are sent to test us. The one day when it had to be a full day at the work base would also have to be the day the office heating failed. The heating failure had to be on the coldest day of the year so far. In the morning the thermometer was resolutely stuck at -2C. In the afternoon the thermometer reached the heady heights of 1C. Sat huddled over the computer with a coat stretched like a tent over me and the screen. Inside the makeshift tent hoping that the hot tea and the heat from the CPU would fend of frost bite. Lovely

Little things are sent to test us. Maybe it’s the frostbite but as soon as I got into the car a warning light came on. Car Key Battery Low – Change Battery. Not a problem as we have a vast collection of various types of batteries at home. Guess what. Having ransacked the house I found 11 different types of battery but unbelievably not one which would fit the key. So let’s hope the key has enough juice left to allow me to get to the shop in the morning.

Little things are sent to test us. Like WordPress being most vexing. For the last 6 months the WP Ipad app has been hopeless. Well not sure what has happened but it is now firing on at least 3 cylinders. Best it’s been for a while. Not saying much but at least it’s partly working. Unfortunately we come to the Yang. Now my WP email updates are a disaster. They arrive as normal but it’s impossible to do anything with them. That leaves trying to read and comment using the app – that is the cylinder which is misfiring. How can it be so difficult to leave a comment or just like something. Just so frustrating.

Little things are sent to try us. Spelling Tests for a Dyslexic. If son doesn’t sit the test then he will be given zero marks and this will rule out any chance of him moving up sets this year. But if he does sit the test he will be given no help and no marking adjustments – setup to fail. As son has decided to try the test he has been practising the words. After much frustration (from both child and parent) Son announced.

This is not happening. I’ve got a photograph in my head of all the words and will just see what happens on Thursday. I can find better things to spend my time on. I can name every English Monarch since 827. Their main achievements, notable events, claim to the throne and how they died. I know it been no use at this school but it’s fascinating. So I’m going to do the same with the French Monarchy. Much better use of my time.

And off he went on his quest. If a child has a passion then that passion should be given every opportunity to flourish. Our bureaucratic education system has forgotten this. Thankfully kids and many parents have not. That’s why there is always hope. Hope in little things.

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.

Mind wrestling

Yorkshire weather. Good running weather. Why would I want to run in dry warm windless conditions. Well that’s what I tell myself. Maybe I’m like Count Dracula. I would turn to dust in direct sunlight. I wonder what I would do if someone offered me the chance though.

I’m mind wrestling with something at the moment. My partner was an epic traveller. She visited so many countries. It was her extravagance. From her late teens she would save up during the year for one great adventure. Family and her adventures was what she lived for. The adventures only stopped when we became a family. Her dream was that when our son became older we could have adventures together. The two places she always talked about was New Zealand (would have been her first time) and Chile. She always said that we would all love Chile.

Then life happened.

I really want to complete those journeys for her. Our Autism World may preclude that. Circumstances may preclude it. But we will see. I most admit a part of me doesn’t want to do those trips. It’s just not right that it would only be the two of us.

Sorry I digress. Back to my mind wrestling. So many adventures and so many photographs. All sat neatly and well organised in carefully stored albums. Here is the dilemma. Part of me wants to do a retrospective photo journal. Tell her travel story. Her trip to the Soviet Union (gives you an idea of the timeframe) maybe would be a great starting point. YET another part of me recoils at the idea. What if she hates that idea. What if I’m breaking some unwritten bond of trust. It’s like having two competing voices on either shoulder each shouting differing viewpoints on life.

She’s not here anymore. What’s the problem!

YOU KNOW SHE WOULD SAY NO. I CAN’T BELIEVE YOUR SERIOUSLY THINKING ABOUT THIS!

But this feeling is something I’ve grown used to over these three years. On virtually every major decision I have these doubts. ‘What do I want to do’ balanced against ‘what would she do’. I try to see the world through my eyes and at the same time through her eyes. Problem is that we were two completely different characters. We each had our own unique take on the world. We would frequently disagree on the right answer. Often we would compromise. I’m still trying to compromise now. Yet I can’t replicate her thought process. I never could and I never will. I’m probably getting her point of view completely wrong. But I still do it.

Maybe other people do this. Maybe it’s just me sinking further into cabin fever.

So am I going to publish this travel journal? I don’t know. WE still haven’t decided.

Obelisk

The Obelisk at Castle Howard. It is over 300 years old and is 24m tall. It has the following inscription

VIRTUTIS ET FORTUNAE
JOHANNIS MARLBURIAE DUCIS
PATRIAE ET EUROPAEQUE DEFENSORIS
HOC SAXUM
ADMIRATIONI AC FAME SACRUM
CAROLUS COMES CARLIOL POSUIT
ANNO DOMINI
MDCCXIV

I think my translation is pretty accurate.

Virtually everyday is wet here. If you have the misfortune to come here you will need three jumpers, extra thick wooly socks and two umbrellas. I could have been built somewhere warm and dry like Rome but no. For some reason they built me in a place that only the Saxons could love.

Its other claim to fame is that when I do my long run I perform a u-turn here and head home. It was very kind of Sir John Vanbrugh in 1714 to think of my recreational needs. Clearly a very clever man. Although he was a tad over optimistic that my little legs would get me to one of his other creations – Blenheim Palace. Not sure even my car could make it there.

But to be fair to the great architect he’s not the only one who can struggle with the powers forward planning.

While my partner was here we disagreed on which secondary school to send our son to. I favoured his current school as at least he would know some kids there. My partner favoured either another secondary school or even a special school. In the end my partner died a year before the decision had to be finally made. So he went to the school I had favoured. With hindsight that was a monumentally poor decision. Talk about a school getting a kids education so badly wrong. The only redeeming feature about my decision is that according to the health professionals the other secondary school option is not much better.

So now we are caught in the classic parent catch 22 position. Does he stay in this failing school where at least he knows some kids. Does he move to the other school which potentially is not much better and would mean a huge upheaval for any kid – especially one with Aspergers. We could look at a special school option but even the health professionals agree that he just wouldn’t suit that educational approach. We can’t afford to sell the house and move to another catchment area. Moving also means having to probably reapply for an Education and Health Care Plan which given the government cutbacks would prove extremely difficult. AND YET I just can’t find a practical way of educating from home.

Sorry to swear but BLOODY HELL.

So I look at the Obelisk and think that’s it’s good but maybe the architect could have included say a comfy seat, a water dispenser, some energy drinks and maybe a supply of oxygen. I look at our sons schooling and think what changes can deliver the best fit in a few years time. I suspect the Obelisk is the easiest to change.

The Poorly Car Run

There is a run I do all too frequently. It’s a lovely run. It’s particularly lovely as it’s flat. But it’s a few miles away from my usual haunts. The run starts and ends at the garage. You see it’s a run which happens when my car is poorly. Today it was the tyres. So off the car went to the garage. So off I went on my Poorly Car Run. Nothing was than sitting in a garage waiting area reading about cars I can’t afford.

The run closely follows one of our larger and most beautiful rivers. The Ouse. As it’s a river that regularly floods you can see the river depth marker. Today it is quite high but thankfully below flooding levels. It did flood a few weeks ago and in the woods you can see the remnants of those high waters.

If I wasn’t about to be hammered financially by the Garage this run would be a truly stunning experience.

The run crosses the flood plains. Today it’s dry but when it floods here can be under 3ft of water. Cold Dark Yorkshire water.

It’s sad that it takes a Poorly Car to bring me here.

So the car has been returned. Monopoly money has been handed over to the Garage. It was a shorts run so my legs got well and truly muddy. Can’t imagine what a dry run feels like. So it was back to work but this muppet had forgotten a change of clothing. Work, autumn, shorts and dirty legs is not a great combo. Luckily it was a solo office stint today.

Few hours later it’s back to the latest school soap story. Another subject test sat without any reading help, no reading pen and no additional time. Even the questions are worded in such a way to make it harder for kids with Aspergers. Set up to fail. Set up to justify the schools assessment of low attainment. I really need another run to release the anger. Anger at the School. Anger at the Council. Anger at me. Anger at the Government. Above all anger at those who will flock in their millions to vote for this Government. A Government for the few.

Maybe tomorrow I will return to the Poorly Car Run. But hopefully it will be the ‘Nothing to do with the car, here out of choice to heal my soul Run’.

Thirty Minutes

About a month a go I visited the Moorlands Nature Reserve. It’s a small but ever so beautiful piece of nature on the edge of the city. After years of driving past it and thinking ‘must go there’ – I finally found the time. Really pleased I made myself stop the car and go for it.

Well another work visit to the City. Work completed sooner than expected. So a spare 30 minutes before I head for the school run. No better use of that time than another walk round the Reserve.

The colours have so changed in just one month.

Countless studies have shown the positive impact nature can have on a persons wellbeing and stress levels. I’m no statistician but I confirm that even just 30 minutes is just so uplifting.

I just love the beautiful carvings which are dotted around the reserve. The old 14th century acorn quote is brilliant. We can make a difference. Seemingly small and modest things can grow into something impressive given time and patience.

I really need to make a date to come and look at that quote every single month. Yes seemingly small changes in my lifestyle can have a significant impact. The garden can be made into our own little nature reserve. I can make a difference. Son can achieve his dreams. I can do this. He can do this. We can do this.

When diplomacy fails.

A largely stress free week for our son. It’s strange how these always coincide with times away from school. How can we have got education so badly wrong for so many kids. So many great teachers yet so many unhappy and unfulfilled children.

Our son likes lists. It reflects how is mind works. They are honest, raw and unfiltered.

Dad I have a top ten list of what I am looking forward to and not looking forward to with this school term

  • Being treated like I’m not allowed to understand stuff. I’m low attainment so I am supposed to act like it. Kids who get lower marks than me, who don’t answer as many questions are in classes above me.
  • Having to put my hand up for help. I have an invisible disability which school doesn’t want to see. So I don’t get any help. No help at all.
  • Never getting a chance to shine.
  • Having to do tests which are made to make me fail.
  • Completely pointless homework. It’s just testing your handwriting.
  • Too much noise. Too many people.
  • Being in a class with so many kids who don’t want to be there so they are naughty. Because I’m in the bottom class I’m supposed to be naughty.
  • Having to wear a uniform which is so uncomfortable and feels awful.
  • It’s never fun. Just rules and avoiding being given negatives.
  • At least it’s not an 8, 9 or 10 week school term.

So in a few hours it starts again. I will repeatedly bang my head on an unmoving brick wall as school and the local council won’t shift. They make me sound like that annoying parent who just will not see the clear logic of the situation. How dare I question the system.

All I can do is keep being there for our son. But maybe there is something else. Let’s really be that annoying pushy parent. Clearly working WITH school and the authorities doesn’t work. What has it produced. A kid stuck in bottom class getting absolutely no extra help at all.

Autism – nothing

Dyspraxia – nothing

Even the little bit of help he received with Dyslexia has been removed

Diplomacy has failed. Working with the authorities has failed. Maybe it’s time to fight them.

Million miles

Always two sides to every story..

Dad it’s been nice. On our walks we haven’t seen anyone. No one has been to our door all week. The phone hasn’t rung at all. Your mobile has not rung. Even when we went to the little local shop it was empty.

In the quiet moments of this week I had been fretting over the isolation. The increasing physical loneliness. Failing to adapt to the new world forced on me by bereavement. Yet one persons silent hell is another persons dream land. And when that person is our son then that is all that matters. The single most important thing. He is happiest when he distances himself from this strange alien world. So be it then

So I need to adjust to this new reality. So many others have had to. The wonderful comments I’ve received over the last few days have demonstrated this. It’s also demonstrated the indomitable human spirit. You can do this. I can do this. WE CAN DO THIS.

Friends. Good Friends. Close Friends. They are to be cherished and loved whether they are stood in front of you or if they are sat in front of a screen seemingly a million miles away across an ocean. Thank you for being there.

Let’s leave it with the fine words of Henry Rollins.

Loneliness adds beauty to life. It puts a special burn on sunsets and makes night air smell better