Silence….

5 Days 14 Hours xx Seconds

No my blog has not been sponsored by Jack Bauer and the 24 TV Production Team. It’s the time I’ve gone without speaking to anyone (excluding our son). I’m not sure if I should be proud or a tad worried. Maybe both.

So almost a week without a phone call, chance meeting or random conversation. Even on two long runs – didn’t bump into a single person. Its one of the prices you pay for living in a small village.

It’s an odd feeling. Have I been secretly ostracised. Has my liking for Nickelback finally caught up with me…….

I had assumed my streak would have ended today as today was the food shopping trip. However I managed to get round the aisles without uttering a word. I did smile a few times at random folk. Surely a conversation will be struck with the assistant on the cash till. But no. All the tills were full so I opted for the self service lane. No scanning problems encountered so the streak continued.

Tomorrow I have to go to the work unit but that is in a largely deserted industrial estate and I will be the only person in our building. So the streak may continue into Thursday. Hang on a minute Thursday is Valentines Day. Wow am I going to be seriously cranky by the 14th…

Anyway we have started a little wager, who will break my streak. I’ve gone for a random cold caller with my first words being “will you just bugger off”. Son is going for the postman or randomly a lost Donald Trump.

I will keep you posted…..

When dreams fade

The pre Valentine onslaught is in full swing. One advert claiming to have the perfect gift for my partner, every base covered….. Really – every base?

I’ve always been a daydreamer. As a child dreams of football, cricket, astronauts and mountains dominated. They gave hope. The years went by and still I dreamed. Dreams of happiness and a successful career. Then I met my partner and the dreams changed. Suddenly dreams focused on starting a family. Then our son was born and dreams shifted to happy family life. Few years further passed and it became more likely no more children would arrive – again my dreams shifted. Now they were dominated by images of us happily growing old together. Walking hand in hand. Sat together in Parisian cafes. Sharing new experiences in new lands. Dreams and hopes intertwined. Then the world suddenly changed….

Now I live in the moment, just focused on the practicalities of the day. When I daydream now (very rare) these are entirely focused on our son. Dreams involving me have gone. When I look – nothing. They died with my partner. No happy thoughts of growing older. Just the deepest blackness. I have heard this phrase used before. Living our lives through our children. It is so true. One role.

One day I do hope my daydreams return. Some things don’t change. I am still a daydreamer at heart.

Bereavement and Aspergers

Death is inevitable but so so tough to comprehend. It’s hard for a grizzly mile worn traveller like myself to cope with, what on earth is it like for someone so young. Especially when it’s now 5 major deaths in 4 years. He’s only 11.

My son living with his Aspergers finds comfort in routine and orderly plans. Bereavement doesn’t fit into this ordered and planned world. Suddenly the world shifts, things are never the same again. This complete paradigm shift seems to manifest itself as shutdowns in his processing skills. His fine tuned memory becomes vague and unreliable. Concepts and principles become just random jumbled images. Simple tasks become complex nightmares. All he can think about is that the world and his happiness will never be the same again. Completely lost in this alien world.

Another aspect of Bereavement is a sensory one. Our son constantly fights to control and deal with all the sensory inputs flooding his body every second, every minute, every day ….. hardly ever receding. He has talked about death ramping all these sensory inputs up several levels. Suddenly the noise in his head is louder, he can feel the heart pounding, his skin is oh so much more sensitive, the unsettled stomach becomes a whirling vortex. He is trying to understand death while coping with this sensory storm.

When Bereavement occurs so many worries resurface for our son:

  • Fear of his own mortality. Suddenly every cold, every encounter with an unclean surface, every bump, every cough is a potential path to death.
  • Fear of his Dads mortality. No backstop, no second parent. Images of sad kids in cold foster homes like Harry Potter or strict Victorian orphanages flood his mind. How many movies have this as it’s premise.
  • Fear about losing special loves he will encounter in the future. Is the safest option to just shut the world out.
  • Bad things keep happening so they must be the norm in life.
  • Is it me. Am I to blame for this.
  • I just can’t find order and rationalise things anymore.
  • You learn to love, you learn to trust, then it is gone.

I think that final fear underpins everything. Trust in life for our son is hard to establish. He works so hard to build those bridges. Death smashes those bridges, breaks his hard fought trust.

We have started the healing process. Recommenced all the stuff which has helped in the past. But each time it happens the path to recovery becomes longer and more difficult.

The irony here is that this post is about our son (my only focus) and yet those last two lines (without thinking) are probably about me.

We now try to move on. The motto we have adopted is ‘each morning we dust ourselves down and go again’. Next post I will talk about some of the stuff which helps our son. More uplifting. More humorous. It has to be that way.

Changes is good just not that early

Today started off in the usual manner. Early morning exercise session listening to rock on the radio. Things going fine apart from the usual creaking body. Put me down for the a full body transplant, I’ve used this one up.

Then things started to change.

I hate doing the plank but apparently it’s good for me. This morning it became even more a form of modern day torture. Two cats decided to sit on my arched back while a dog attempted to lick my face off. Apparently this was one of the Spanish Inquisitions favourite tortures. But I survived.

Then almost immediately the radio signal disappeared. The sound of silence. So I quickly grabbed the first cd I could find. Black Sabbath Vol 4 and tried to complete the session.

Vol 4 is a fine album and features a rarity for Sabbath, a slow reflective song. CHANGES. This song finished off my exercises for the day. Normally at the end of a routine it’s an immediate mad sprint for the warmth of the shower. But not today. I just sat on the cold floor. Lost in thoughts.

A line from Changes had shaken me.

And I can still hear her last goodbyes

I can’t. As hard as I try I can’t remember hearing my partners last goodbye to me – blank. I can vividly remember her peacefully sleeping at the hospice as if it was yesterday. I can remember talking to her gently and holding her hand but as hard as I try I can’t remember her last goodbye. I can remember driving her to the hospital with our son but the conversations are gone. Why would I remember them at the time as she was only going in for a couple of tests and would be out by the weekend. I just can’t remember that last goodbye. That haunts me. Probably will always haunt me.

Put the cat in charge

I was blog chatting (or whatever it is called these days) with a friend today and somehow politics came up. When I say politics I mean really silly politics. Our politics is grim. Very grim. One of the only fun elements is when one of our smallest parties enters the elections. The Monster Raving Looney Party. It’s almost as if Monty Python had entered politics. It was started in the 1960s by the musician called Screaming Lord Sutch.

This was the Party who had a real cat called Catmando as its joint leader for 3 years.

Some of its brilliant policy ideas have included:

  • Make the tax system more complicated so that it is harder for companies to find loopholes
  • Make it illegal to walk under ladders
  • To prevent global warming all buildings will have air conditioning units on the outside
  • All politicians should paint themselves permanently from head to toe in the colour of their party
  • All socks to be sold in packs of 3 in case you lose one
  • Introduce a 99p coin
  • To save money they would only operate our nuclear missiles at weekends
  • Build a really big wall (or hang on that’s not one of the Looney Parties policies).

The scary thing is that actually some of the ‘crazy’ policies they came up with have over years actually become rather sensible and have been adopted by the government. We have pet passports now and who was the first party to propose them. They jokingly proposed 24 hour licensing for places selling alcohol (had been very restrictive hours) and a few years later it became law. Back in the 1960s they campaigned to have the voting age reduced to 18 (now the law and how was this ever considered a mad idea).

Sadly they never quite get into government. Maybe because the looney vote is split. At the last election you had the Looney Party, plus you had a chap called Lord Buckethead, some guy dressed as a fish finger and some chap dressed as Elmo.

Some would argue that recent governments have been infiltrated by loonies.

What am I wittering on about. I don’t really know. I think the point is that when the world seems really bleak and sad. When you want to just stand outside, look at the heavens and scream. To hear your own tears raining down on this increasingly alien land. Just sometimes the only thing that keeps you going is a bit of silliness. It brought me back from the edge. Our dip into politics today certainly made our son laugh. It made him forget about his worries for a few minutes.

If the Looney Party has indeed a track record of starting sensible policies off then maybe they should come up with a policy of banishing sadness and anxiety. Maybe in a few years it becomes reality. I could vote for that.

Sleepwalking

New Years Day brought the traditional trip to the Yorkshire Wildlife Park. It was a wonderful few hours – more of that in the next post.

On our return things seemed fine. Then steadily things started to deteriorate and eventually we had a full on anxiety vortex. Consuming so much energy and hope.

Our son started to think again about school. Like me he often tries to overthink problems. Visualise potential outcomes. And in a similar way to Dr Strange when asked by Ironman about the millions of potential scenarios to stop Thanos – “he could only find one option which had a chance of success”. In our Son’s analysis he could only see one option with a chance of success – leaving school as a solution to his anxieties.

  • Teachers who don’t understand him
  • Falling further behind in reading – he realises that although he is making progress this is not catch up progress rather this is at best slowing the widening gap
  • Friendships
  • Low school expectations
  • Little help
  • Sensory overload at school – too much noise, too many people
  • Too much homework
  • Constant fear of getting negative comments and falling foul of the penalty system. Even something like forgetting to button up your top button or forgetting to bring in your planner producing automatic penalties.
  • A school timetable which brings tight deadlines and logistics pressures to someone with Aspergers.
  • In a disruptive class
  • And on and on …..

Again today I couldn’t find the healing words. Just couldn’t stem the raging anxiety vortex. The vortex doesn’t just suck our son’s energy it feeds on mine to. Increasingly tired. Feeling broken. Mind keeps crashing back to those 6 weeks when I lost my mum and then my partner.

We try to get some sleep but the vortex continues to rage and our son is beyond sleep.

Dad we need to do something, anything”.

Come on let’s take the dog for a walk.

But I’m in my pyjamas and it’s nighttime”

Get changed quickly then.

Ten minutes later at 10.50pm we are walking the dog in the pitch black with one cheap torch to guide us.

The dark, the quiet, the spookiness – whatever the reason but suddenly the anxiety vortex is calmed.

Talk is now about the things we really wanted but never got as a kid. The things we love and hate about England. Favourite foods. Ghost stories.

Hopefully for one night our son is ok. He is asleep and hopefully has a good night. We dust ourselves down and go again tomorrow.

Today

DEEP BREATHS – MOVE ON

Grief is a double edged sword. Yesterday felt like repeated thrusts to the heart. Focusing on what has been lost. That ‘why did it happen to me’ feeling. Everything reminded me of the loss. That video. Sad songs. Radio advertising – anything from where to go for your romantic Christmas meal to the perfect present for your loved one. Her favourite painting. Her favourite cat. That empty bed.

The walk, the wet walk did help a bit. It did help me get focused and ready for our son.

Today I’ve experienced the other side of the grief sword. The positive side. Now the focus is on how privileged I am. Even someone like me was able to experience 16 golden years. Romance. So many happy memories. A beautiful, perfect son. Grief is really everlasting love. That is something which can’t be lost.

Great Questions.

On a trip to Newcastle last weekend our son remarked

“I know that the river is beautiful at night but just imagine how stunning it would have been without humans”. “Do you think the world is a better place for having humans?”

This slightly took me aback as I has only asked him if he wanted pizza or a burger to eat on our way home….. It’s been week after week of questions that seem to have befuddled my limited reasoning powers.

“How do you think a plant cell first adapted to include Chloroplasts?”

“Do Alice Coopers friends call him Alice or his real name?”

“Why do kids laugh at people who can’t read but don’t seem to laugh at people who can’t do art or do maths?”

“Do you think the Doughnut Shaped universe theory is right?”

“Why can some people sing and some like you can’t sing – is it your body, a skill you learn or just luck?”

“Why do they keep saying those pesky kids in Scooby Doo when they must be older than you these days?”

“Why are there so many religions?”

“Rather than always trying to be good, would I get more help if I started to behave badly at school. If I did get more help would that not mean that I would have a better chance of improving?”

“Why are paper cuts so painful?”

“I have to paint a picture for Art homework, it has to be like one by Henri Rousseau, what is his style?”

“Why do we have to grow up?”

“Do you think Donald Trump gets his bodyguards to search for his golf balls?”

“How do we really know that the colour green is actually green, or it’s just a fault in the human eye?”

“In Spongebob why don’t the crabby patties ever get really wet being under the sea?”

“Did the Astronauts have to wipe their boots on a mat when they came back to the ship after a moon walk?”

“What’s your favourite Pokemon from each of the regions?”

“The Prime Minister is old. All the people helping her are old. Why are there never any young people helping. Leaving Europe effects the young as well. Is it because they wouldn’t agree with our view of the world?”

“Why is Dinosaur Train never on TV now, is it because they are having to redraw all the dinosaurs with feathers?”

“Who decides what a swear word is?”

“If Crocodiles survived the mass extinction why couldn’t some of the dinosaurs survive?”

“Why are schools made to be so unfriendly?”

“If some mountain ranges are rising up from earth movements does it mean somewhere else has to be getting lower?”

“Why after all those years of not winning a single thing and constantly letting you down, do you keep supporting that football team?”

“Do you think Stan Lee would rather go to Heaven or Valhalla?”

“What’s your favourite Batman bad guy excluding The Joker, Penguin, Riddler, Mr Freeze, Two Face, Bane and al Ghul?

“If I lived on a deserted island and I never met another person ever again, could I just forget that I have Aspergers and Dyslexia ?”

Even google couldn’t help me with some of those questions. As I’m writing this he has just stopped watching his tablet and asked:

“If we know so little about the universe, this man has just said less than 1%, how can scientists be so certain about things?”

Thankfully this was followed up by “have we got any ice cream in?” – I can answer that one.

Moments

Everyday I find a quiet part of the house or garden and just sit and think. I think about the loved ones who are no longer with us. Just 10 minutes of reflection, but it is so important to me. Just trying to remember some of the key moments we shared. Trying to reconnect. They may not be here physically anymore but in my mind they are still here, still part of my life. Today I remembered a trip to Lauterbrunnen. Holding hands with my partner drinking in the alpine air and watching in awe at the spectacular Staubbach Falls

The reflections are uplifting but are tinged with sadness.

Such a happy memory but oh so brief. Little did we know how few opportunities we would get to visit this wonderful alpine setting together. Sometimes life is hard and painful but I am thankful that I have these memories. Thankful that I had that brief moment in time and also thankful that now, a 1000 miles away Lautterbrunnen is there. The falls are still crashing down given other couples the same opportunity to create their own brief moment in time. So today on this day, this somber day I am sad but oh so thankful.

Almost perfect

Yesterday was one of those almost perfect days. Everything went to plan. An early walk through autumnal parkland. Stunning colours. Early enough that we had the place to ourselves. No need for anxious glances at strangers. A wonderful wide ranging conversation with no distractions.

If you had one of the escaped Jurassic World dinosaurs, how would you disguise it when you took it for a walk?

Why is the Easter Bunny a rabbit and not a mole or lamb or donkey?

Why do footballers dive?

Can you hear explosions in space?

Who would win a battle between a 30ft T-Rex and a 30ft John Cena?

Is there anything in the world that Bear Grylls wouldn’t eat? Could it be Brussel Sprouts?

How would we cope if numbers had not been invented?

Then a day at home. No phone calls. No knocks at the door. No visitors in the neighbours gardens, A day filled with trampolines, playing ball with the dog, Top Trumps, Lego building, water pistol fights and an old ScoobyDoo movie.

A completely relaxed and contented son. No anxiety. No meltdowns. No worries about fitting in. Just happy and laughing.

I said it was almost perfect. Just two improvements.

I just wish his mum was here to join in. And…

It’s a privilege to spend such quality time with my son. I can’t think of anything else I would rather do. But I just wish one day that I can look out of the window and see our son having a similarly wonderful time …. playing regularly with someone his age. Not having to play with his boring old dad. With someone he can call his best friend. That would be the perfect day.