Red Sky in the morning….

Red Sky at night …. fisherman’s delight. Red Sky in the morning …. fisherman’s warning.

Yes it works.

A routine dental appointment ended with me trying to stem blood from the mouth for 4 hours. That’s a good start. Especially as I’m one of those odd souls who is fine with blood as long as it’s not mine….

Then school struck again….

Son had been looking forward to getting his school award from the celebration evening. That’s all changed now.

I don’t want to go. I REALLY don’t want to go. Turns out it’s not a party after all. Everyone getting an award has to go on stage and then give a little speech to the crowd. Going to be at least 100 parents sat in the audience. We have to practice the speech tomorrow. When I told the teacher about my Aspergers she said ‘it would be good for me'”

So we have gone from a boost to self confidence to meltdown. Doesn’t help when the kids have been told that they are representing the school so they need to be in full uniform and speak with a loud clear voice. Speaking to a large audience is a challenge for anyone. For a kid with Aspergers it’s a nightmare. Room full of strangers, no where to hide, all those eyes on you. One final twist is that the kids can take notes on stage to read from – well that’s bloody helpful when your dyslexic. It’s just not right. AGAIN.

So we have agreed that son will ask if he can get his award without going to the event. If he has to go then he is going to decline the award. If that’s the case then I’m sure a Dad , Son, Cat, Dog and Gerbils can come up with our own FUN awards night. The magic word being FUN.

Dumbo meets Braveheart

Everyday more red bursts through to bring life to Yorkshire In Autumn. No creative license required here. Last night son asked to watched the Mel Gibson movie Braveheart. He quietly watched the movie in one sitting. When it had finished he had one of those looks. The Paddington Hard Stare.

Where do I start. I gave up making a note of the historical inaccuracies when I got past 30. I think they were averaging one a minute. I hope people don’t think it happened like that. As a piece of pure make believe it was ok. As an accurate record of real history I’d rather trust the new Dumbo movie”

I have to say the new Dumbo is great. But it’s one of the THOSE movies which would have been much easier to watch if it had come out before our world changed. Movies with the death of a mum are still very raw. For both of us.

Dumbo also touched on the idea that sometimes we are not prepared for what may face us a parent and as a human. Don’t want to give any real spoilers away so I can’t say too much about the movie.

I wasn’t prepared in the slightest way for being a single parent. For being a widow. For having that awful conversation with your son. For picking up the pieces of a life which had been based purely on three of us. But to be fair as a couple we were not prepared for the loss of one of us. Our lifestyle was based on two parents. Financially it only worked with two of us. After we became a family our careers only continued to work because we could share the load. We only continued to have a bit of a social life because the other partner was there.

So when you suddenly take one partner away …. it all comes tumbling down. Three years later we are still trying to rebuild our life’s. Watching another autumn and another set of red leaves makes you appreciate life goes on – even after a death.

The view opens up

One of my Running trail runs is tough. It’s a muddy slog through increasingly thick woods. It’s a slow claggy run climbing through undergrowth that sees only glimpses of the sun. It’s very claustrophobic. Your on your own. A little voice keeps telling you to just stop. Why am I doing this. One step forward, two back.

But with patience and effort the going becomes easier. The ground levels out. The cover starts to thin and the distant view begins to reveal itself.

Then your out. The openness is initially disorientating but it’s been so worth the struggle.

Then a reluctance. A moment of doubt. Need to turn your back on the openness and head back into the dark. The way is back through the woods.

This trail run reminds me of our life these days. I head into the working week with trepidation. Too much to do and not enough time. Self doubt is king. Often so little direction and so much frustration. It feels like you are against the world. Battling uphill through mud. Our Son heads into 5 days of mainstream school. So little help. Fighting on his own. Not sure why he is doing this. It’s an alien world. You just have to keep plodding on but then Friday comes. Our hopes and spirits build. Then you arrive at the weekend. For two sweet days life improves. The week’s slog and struggles are forgotten. But so quickly it’s late Sunday and you face the trepidation of the upcoming week and the return to the darkness.

So we move on. The week calls and maybe so does the woodland trail. That’s our life cycle.

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.

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.

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.

World Mental Health Day

Every 40 seconds someone loses their life to suicide.

Too many die in silence. We need to continue to change our society. Progress is being made but not enough. A stigma still exists about Mental Health and Suicide. In my country you die of a heart attack but you commit suicide. Commit is associated with crime. That’s just wrong.

It’s time for change. It’s time to make it ok to talk. The more we talk the more acceptable it becomes.

I suffer from depression. It comes in waves. When I was young I hated being me. That’s still with me today. Two big things have stopped me becoming a suicide statistic. HOPE and LOVE. Both give you the strength to keep walking through the dark times. Just a fraction of either is all it takes for many.

So today and everyday let’s try to give that love and that hope to others.

Crazy dreams

Dreams and memories are a vital part of life. After my partner died memories became my essential comfort blanket – something which kept me going. Three years later they are just as important to my soul. The occasional forgotten photograph find rekindle long forgotten life snapshots.

Dreams come in three forms for me. Those dreams of a future life, memories and those dreams which come during those all too brief periods of sleep. My future life dreams died when my partner left us. All I see is darkness. My job is to give our son the best possible childhood. After that nothing. It’s something I’ve heard from others in a similar position to me – I live through my son.

After the world changed my night dreams became a weird bizarre place. Reality completely warped. But increasingly the dreams became memory driven. Accurate replays of precious moments. This brought great solace with a few tearful mornings. But recently things have changed. Suddenly the night dreams are actual memory based but morphed in some important and strange way.

A lovely visit family trip to Edinburgh Zoo to see the Pandas. But in the dream the family trip becomes a trip round Jurassic Park world. All the actual incidents but with a dinosaur flavour.

A trip to the Royal Ascot Racing Festival held for one year at York. The Queen riding past us. 2005. Yet in the dreams it’s not Horse Racing. Sometimes it’s Dragster Racing. Sometimes it’s donkey racing. YES I get these strange morphed dreams repeatedly.

A family trip to the beach. It’s cold so it’s double jumpers. Ice cream and hot doughnuts. Yet on the first sandcastle we strike oil. Oil gushes out of the beach.

A romantic meal. Days filled of love and smiles. Yet the fine food is replaced with bugs and slugs and grubs.

A hand in hand walk round York’s Roman Walls. But instead of lovely views of York and it’s stunning Minster we see Paris on side and Nepal on the other side.

A New Years Eve Blues Brothers Themed Night replaced with a WWE wrestling night.

I could go on. So many odd dreams. I’m not a clever man so I’m not going to venture into Descartes territory. I suspect the reasons may not be that fundamental. But the bottom line is that I want my precious original sleep dreams back. Often they are all that remain of a better place. I like a bit of craziness but not here please.

Unsettling

It’s been a seriously grey day. Heavy rain due within a few hours. When it’s like this you can’t see where the road ends up. You end of questioning your judgement. On your own it can be deeply unsettling.

Unsettling is a term I’ve become used to over the last 3 years. When my partner left this world it was a massive shock to my system (understatement of the year). For years I had got used to that wise voice guiding me through the world. The wise guide on life, on parenting, on everything. Suddenly life was uncertain. Now I was map reading on my own. Trying to navigate life and Aspergers felt like walking an increasingly thin tight rope without a safety net. Initially my approach was trying to make decisions that I thought my partner would make. Never going to work. We were different people with different takes on life. It was down to me to own this. Take responsibility. But it’s easier said that done.

Three years later it’s still easier said that done. Grief tries to rob you of your confidence and self esteem at a time when you are your lowest ebb. You have probably just lost your guiding light. Everything is stacked against you.

So again this weekend another crisis of confidence. Been many of these. Am I handling the school situation correctly. Should I be more forceful? An I being to pushy? Am I getting this badly wrong like most things. How can I be trusted with this when I can’t sort my own life out. Basically I’m out of my depth here. It’s a deeply unsettling feeling which sadly is not restricted to me. Too many live with this. In my case this leads to an initial overthinking of the situation, then the mind keeps focusing on the negatives (the possible ways I could mess this up), next comes the crisis of confidence which leads to a spell of depression. Well at least I’m predictable.

But the bottom line is that it IS DOWN TO ME. No one else is here. So I might think that I’m the wrong person to do this but I am the ONLY person available to do this. So it’s time to just try to keep moving forward. Move forward even though the path has disappeared. Hoping that one day the fog will clear. Then is the time to judge who bad my judgement has been.

Another odd day

Another odd Yorkshire day. Mixture of sunshine and then chucking in it down. Warmish then freezing. Still and then gales. But it wasn’t just the weather that was odd.

This morning started with a broken works computer system. Won’t be fixed until this – Saturday so that’s several late nighters then to catch up. Didn’t really want any sleep this weekend.

Next came a heated exchange with school. Due to a school admin error son never got his Year 8 injection. Not an issue as the school nurse will be returning next year BUT just a picking minute. If parents or kids make one mistake it’s an automatic negative yet no sanctions on school when they mess up. Apparently in schools case it’s just one of those things as mistakes can happen. Have you had one of those calls where you can feel the blood go from boiling to nuclear. One of those calls where you are increasingly squeezing the life out of the telephone. This was certainly one of these.

The call rapidly moved onto the lack of support for our son and the refusal of school to move him (at least in a couple of subjects) to a higher set. Last school year his Form Tutor told us that he was performing so well even without support from school. She was one of the few teachers who seemed to understand dyslexia and autism. As his marks were in the top 2 of the class then he should be moved up in at least 4 subjects. Unfortunately she left in the summer. On the call school said the Form Tutor was incorrect and it is not just marks that determine academic performance. Now apparently he is viewed as being in the lower middle of his class with many children ahead of him. In effect he is a low performer and any moves up in set are out of the question. The call ended (to the phone handset great relief) with a terse Dad demanding another meeting with school and the council. Not that it will do any good.

Needing to cool the raging core meltdown within I went for a run. A couple miles into the run a hot air ballon appeared over the trees. A quick photo and off I set again. Head down.

Running through the woods I started to hear voices. But nobody was insight on the path. Oh no it’s those Viking Ghosts. Then a roar of a burner above. Now the balloon was directly above and just above the tree line. I’m being buzzed by a mad balloon pilot.

Then a shout and they started waving at me. You wouldn’t be waving if I had a pellet gun with me.

Then it slowly started to rise and off it went.

Just before school finished I had a dreaded dental appointment. Might as well buy a yacht in Monte Carlo – unbelievably expensive. I ended up being told off for trying to be healthy. I have always had lemon water when I am training. Even more since I’ve stopped drinking coffee. The Dentist was not impressed. Apparently lemon (even watered down) is really bad for the enamel. Good job I didn’t mention the super strength lemon drink I have when I wake up. So now I am supposed to switch to Cucumber Water or Thyme Water. Cucumber Water taste like the liquid you drink as the last resort if your stuck in the desert. I’m only guessing that as NO I have not drunk my own …….

One last odd twist. Son came back from school with a letter. The letter was issued to son before my heated argument with school. In a few weeks the school is having an awards night. And son is getting an award for the number of merit awards he got last school year. This is fantastic. BUT. Not sure how this tallies with the schools current assessment of him.

Definitely an odd day.