The Black Hole…

I could look at these flowers all day. Stunning yellows with one sneaky violet crashing the daffodil party.

The school bus was late. Very late. Our son went into meltdown. Panic attacks over detentions, expulsions and all the associated ever increasing butterfly effects. All today’s carefully constructed plans are in tatters. It’s part and parcel of being a child with autism. We now have a plan for this type of eventuality. A hand written plan we keep safely by the front door. When I say plan it’s actually an old food shopping list. The plan Z list was pulled from the wall.

Tell me 5 things you can see.

Tell me 4 things you can hear.

Tell me 3 things you can touch.

Tell me 2 things you can smell.

Smile once and breathe.

Plan now says Dad get the car keys and drives you to school.

Thankfully today Plan Z worked. Distraction and switching to another orderly plan. It’s funny as a shopping list it was poor (I remember it missed off non essential stuff like bread, milk, pet food…. but as a go to plan in times of crisis – it has been a winner. It’s so flexible the actual words on the paper are irrelevant. It adds credibility to any plan I come up with in an emergency. Because that plan must be good as it’s the plan on that piece of paper – it’s Plan Z. As we reached the school gates order was starting to be restored in his soul. He made me smile with some of his responses.

“I can see bird poo on your car. I think it must have been a big bird.”

“I can see a couple of blue flowers in the Daffodil patch. Maybe they are mutations. Definitely beautiful mutations. Flowers are very welcoming.”

“Dad I can still see that cake you made yesterday. It was so funny how you got it to collapse in the middle. After all these years and still it messes up. The cake was so like a black hole. It was both a thing of wonder and a piece of terror. It’s a special talent Dad.”

As the great Terry Pratchett once said “Wisdom comes from experience. Experience is often a result of lack of wisdom“.

So yes my sneaky practice run for this Sunday’s GREAT BLOGGERS BAKE-OFF didn’t go so well.

Hopefully you will join in the fun on the 24th.

Daffodils and that pesky problem.

It might be cold. It might be windy. It might feel nothing like Spring. But at least the daffodils are out in force.

I couldn’t sleep last night. On a hill the wind tends to howl. And wow did it howl. It’s been like that for days. A number of the local tourist sites are closed on safety grounds.

So today my brain has been running a bit in neutral. Processing a barrage of questions.

“Dad why does Gordon Ramsey swear so much?”

“How is May still Prime Minister?”

“Has the Champions League draw taken place?”

“When can we go to see Captain Marvel?”

“Why do Daffodils have such a short flowering season and why is it in a time period which is notorious for poor weather?”

“Why haven’t they made a new series of Gravity Falls?”

“Why do we focus so much attention on the Battle of Hastings and William the Conqueror. Yet we never talk about the years proceeding the battle. They are just as important.”

“What’s a Gravity wave?”

“How old is Alice Cooper?”

and on and on.

And yet I managed to hold my own. It was that sort of day. Maybe not on top form but ticking off jobs.

  • Cleaned the Gerbil Cage without accidentally releasing the little darlings to cause havoc around the house,
  • Managed to negotiate a cheaper broadband deal,
  • Get the old laptop working again,
  • Completed this weeks work requirements,
  • Change a wiper blade on the car,
  • Repair some knee holes in jeans,
  • Sort out some problems with son’s school iPad,
  • Prepare meals for tonight,
  • Replace a hose in the hoover,
  • Finish the ironing,
  • Clean the bathroom,
  • Get all the outstanding bills pad,
  • Convince the Council to give us a free replacement wheely bin as our old one is held together with 2 rolls of tape.

But then the success came to a grinding halt. Failure in the face of an insurmountable problem. Defeated by a super complex Riemman Hypothesis. My version of Star Treks Kobayashi Maru.

Changing our son’s Duvet Cover.

How difficult can it be. The cover comes off so easy. But when you try to put it back on. Suddenly it’s like trying to play a game of Twister with Ninja Octopus. Gets twisted, Rides up. Goes in the wrong way. Decides to turn inside out. Suddenly the duvet appears to be covered in the worlds stickiest Velcro. It’s just a nightmare. SIXTY PESKY MINUTES later and the only thing I had achieved was to go into full Hulk Rage.

Come on Spring. Please arrive soon. Bring in the warmer weather so I can ditch the duvets and those demonic covers – for a wonderful couple of months. Daffodils remind you that those happy days are coming.

Blue Croc

Captain Chaos with his beloved blue crocodile. That poor croc needs years of therapy.

***********************

When a parent dies it is so tough it is difficult to explain the feeling. That’s a so called adult speaking. Imagine what it’s like for a young kid.

I lost my dad when I was 21. He had been ill for years. I got the feeling during the last period of his life that he was trying to keep going just to see me graduate. Sadly he missed out by a few months. It was a numbing experience but the pain was mitigated a bit as I had been expecting it to happen for ages. I was sort of prepared. My mum died a couple of years back. It was a complete shock. But a five years earlier she had suffered a massive stroke. Doctors told us to prepare for the worst. Yet in a month she was back in her house – still able to live independently. In some respects it felt like the years after the stroke were a real bonus. She got to spend time with her grandson.

But for our son we have no mitigating factors. He had just been to his beloved grannies funeral and a week later his mum goes into hospital for some routine tests. His mum deteriorated rapidly and completely unexpectedly. He was visiting his mum in the hospice two weeks later. For someone so young that’s devastating.

We still get tears but now he can talk about his mum. He can laugh at the good memories. But the anxieties caused by that period of death are still impacting his daily life. He is so worried about becoming ill and also about losing others close to him. Today is common. We have had anxiety about catching illnesses. Worries about dying. On top of that every time I sneeze or cough he runs to make sure I’m ok. We try to find ways to ease the anxieties but it is still so tough for him…..

***********************

Son comes back from school to be greeted by Captain Chaos and a well chewed croc. That’s one thing that works.

An introvert?

Building a snowman here while lots of people walked past looking at me as if I was crazy. Five yards to the right is a high street full of shoppers and tourists.

I know I tell a few tales that might suggest that I am an extrovert. I really don’t think that’s the case. After the all too many retreats into my protective shell I often here something like “I thought you were an extrovert”.

Extroverts don’t tend to

  • Have a nervous stutter when talking to strangers
  • Frequently wait for the coast to be clear before you leave the house
  • Turn in the opposite direction when you see someone who might talk to you
  • Avoid social and family gatherings
  • If I do go to a social event, be the awkward one stood in the corner behind the potted plant

So why the drastically opposite personalities. For the first time I thought about it during yesterday’s sleepless night.

Is because I am an Ambivert. A bit of an introvert and a bit of an extrovert.

Is because I am an extrovert permanently stuck in an introverts shell.

Is it because I don’t really fit into this world and occasionally I feel the need to do some grand action to confirm that I do fit.

Autism.

Is it a pressure release for my building anxiety levels.

Is it because I want to be extroverted and when I do find a group of friends I feel confident with I then act out my dreams.

Is it one or two too many sherbets during my younger days.

Is it because I am basically daft.

Is it because I too frequently switch off my brain.

Who knows. I do know that my extroverted moments are becoming very rare these days. Especially since the world changed. But at least I can look back at some interesting memories. Some reasonably funny, many extremely embarrassing. Most importantly no animals or other people were hurt in the making of these moments.

Cold

Today we have an outbreak of manbola. Streaming cold, coughing, sneezing, sore throat …. just didn’t want to get out of bed. I have to admit I am a …….

The dog walk must have been some sight. Gloves, 2 T-shirt’s, Fleece, Jumper, body warmer, waterproof and woolly hat. And that was just the dog.

It’s one of the big downsides of being a single parent. Whatever the relative severity of the manbola – you don’t have the option to not get out of bed or just sit in a chair with a hot water bottle. No one to share the workload. So you just have to get on with your jobs while croaking out conversations with our son. Powered by hot ginger drinks and tea. It’s days like this you want to drop your caffeine ban.

It also gives you plenty of worries. It emphasises that many single parents (and a number of parenting couples) often operate without having an option b in place. If something serious happens to a parent(s) what happens to the kids. It’s a sobering thought.

I am an amateur at these things. So many parents have had much worse situations to deal with for so many more years. I have so so much respect and admiration to you heroes. So we battle on. In the scheme of things manbola isn’t that bad really.

AND one definite plus of manbola is that you just can’t smell the cat litter when you change it….

Cat and stress?

The Boy Cat is happy. Getting his tummy tickled. Apart from eating and sleeping, that is his favourite thing. It provides such a great stress release for the human.

THEN

You find out that the cat has been lying on your Black T-shirt. White cat hair is not a great look on black….

The cat – a stress reliever and stress provider….

Anxiety

Anxiety is far too often an unwelcome visitor to our house. I have suffered from it since childhood. It got so much worse after the world changed. Never ending road. Virtual all the worries now focused on our son. Not sure I am that bothered about myself these days….

This morning I woke to that unwelcome guest again. So many voices in my head. All saying the same thing … son is due a anxiety meltdown. Unfortunately that was the truth.

Anxiety and Depression are real inhibiting factors for so many in our society. Research clearly indicates that the risk of suffering from these awful conditions are increased for those living in the world of autism. At least a two fold increase is often reported. Yet from personal experience this was never identified in any of the briefings or guides we received during our journey. It is just not addressed appropriately by society. This can and does have catastrophic results. In our case it took several years of pushy parenting before our son started to get some help.

It’s so difficult to unpick the anxiety for our son. Is it Aspergers related, is it Dyslexia related, is it bereavement related, is it human life anxiety, is it all four….

With our son we have a frequently returning swirling mix of worries and demons. They recede then they blast back. On really bad days they all materialise at the same time. He has many repeating spectres.

  • Dyslexia and it’s unwanted consequences.
  • Friendships and social interaction.
  • Not understanding this strange, alien world.
  • Fear of death (his, mine, his pets, his remaining family, the people he cares for).
  • Related to the fear of death is his fear of illness. Everything is catchable. Everything can be a risk. Every sneeze, every ache, every speck of dirt is a potential harbinger of a health disaster.
  • School. Homework, rules, punishments, no support, cold and scary environments.
  • Feeling different, feeling inferior, fearing the finger pointing, fearing being laughed at.
  • Running out of money, going broke, losing everything.
  • The climate, wrecking the natural world, world politics, Brexit. World is going wrong.
  • Being alone.
  • Having to fit into large social groupings.
  • Fear of being long term depressed.

This is someone so young.

Today it is the return to school and fear of illness. The anxiety vortex is building strength. The bag of tricks we try only helps take the edge off but doesn’t fix today. All we can do is just be busy. Constant activity. Try to stop the mind thinking. These apply to both of us. My world is full of anxiety today as well….

Cragfast

Somedays you wake and the world is full of hope. Yes it’s a challenge but you stride purposely towards the light.

Whether it’s the alignment of the stars, or the moon, or the lack of sleep or the weather or the cards are stacked against you or the demons have woken ….. but for whatever reason somedays the world appears different. You are alone and operating without a safety net. It’s is dark, cold and scary. Often I liken the feeling to a Tolkien like scene. You are stood on the ramparts of Helms Deep. It is cold and the rain pours. You are besieged by an evil army of Orcs. But this time you are stood alone and Gandalf isn’t riding over the hill top to save you that day. You feel like hope has deserted you. A battle you didn’t ask for and one you cannot win this day.

In climbing the dreaded word is cragfast. Basically you are stuck. You can’t go up, down or sideways. Less polite terms also exist for this ……

My mind drifts to The Eiger. Back to 1936. Four young climbers attempt to be the first to scale the infamous North Face.

Andreas Hinterstoisser, Edi Ranier, Willy Angerer and Toni Kurz.

On the ill fated ascent Hinterstoisser opened up the mountain with an astonishing traverse now named after him. Tragically they decided to remove the ropes they had fixed in that section. A huge storm set in so they tried to retreat. They discovered that the Hinterstoisser traverse could only be completed in reverse with the aid of fixed ropes. They were suddenly out of options. A suicidal decent was attempted. Over the next few hours three climbers died. Rescuers got close to the remaining climber Toni Kurz. But they did not have enough rope to reach him so they had to retreat leaving the young climber stranded. They left to the echos of a climber pleading not to be left alone. The next morning a second rescue attempt was launched but they found the young climber close to death. He quietly said “Ich Kann nicht mehr” – I cannot go on. He died feet from rescue.

The German 2008 movie of this tragedy “North Face” is one of the bleakest movies you will ever see. I have stood at the bottom of the North Face. Your mind can’t help thinking of those brave young climbers. Too many climbers have been lost here. It’s a truly cathartic experience.

What is the point of this post. I am not sure. Maybe it’s just about saying that life can be bleak and dark. You will come across times when you become stuck – cragfast. You find times when you are on the ramparts alone. You hope that when that happens people will come to save you. But rescues sometimes fail – even heroes stumble. These are the times you have to stand alone. Those are grim times. Times we must endure. You hope to just make it through the night. The morning may bring new light or a hero. Or you may have to struggle on for another day alone. It’s a sobering thought.

A letter dilemma

Out of the blue I received a letter addressed to my partner. It was a friend who clearly hasn’t heard the sad news yet. Reading the letter was heartbreaking as this lady had tragically lost her husband. She was clearly in a bad place.

This leaves a dilemma. Do I tell her or not?

I know the right thing is honesty and I should inform her. And yet…. does someone who is in such a bad place really need another piece of bad news. I told our son when he noticed that I was distracted. Interestingly he said that I shouldn’t make her even more sad. I had assumed his Aspergers Truth Filter would have made him say – just tell her straightaway. It rather puts a lie to the frequently heard argument from experts that people on the spectrum are cold and uncaring.

Even after a few hours I can’t make my mind up.

It doesn’t help that I remember when my partner found out about a friends death. She had met this wonderful lady from Channel Islands on a trip to China. They became good friends. I remember she came to stay with us for a few days. We hadn’t heard from her for a few months. Unfortunately a birthday card my partner has sent her was returned unopened and marked ‘person has died’. It had such a profound effect on my partner, I’m not sure she ever fully healed from it.

The circumstances are different but do I want to put someone through this now. I really don’t know. I just don’t know….. What I do know is that I can feel those icy fingers of sadness starting to circle my soul again.

12 uncomfortable things

Our son realises that he doesn’t naturally fit into this world. Certainly not in its current format. His attitude is basically

I might wait for the world to come round to my way of thinking but just in case I had better dip my toe in the icy cold water which is the big bad world. It’s something I’m not going to enjoy but it’s probably worth it….

As part of this process we have agreed to visit 12 new places this year. Doesn’t sound a big commitment but in-fact it’s huge for our son. We will have our first new excursion next week….

Tonight we started discussing potential places to visit but somehow the conversation careered off topic. It suddenly became name 12 things you like about you and your life.

I went first and it was a really uncomfortable experience. I do find it difficult to think constructively about myself these days. So much easier thinking about negatives. Anyway for someone who basically hates himself I kinda did ok

  1. Son
  2. Memory of my partner
  3. Family
  4. Pets
  5. Friends
  6. My eyelashes
  7. I am pretty fit
  8. I occasionally can be mildly funny
  9. Musical taste
  10. Decent imagination
  11. I’m kinda resilient
  12. I’m still here

Son went next with his 12 things he likes about his life

  1. Family
  2. Jimmy – Dog
  3. Bluey – Cat
  4. The gerbils I am going to get for my birthday (mad scramble – news to his dad)
  5. My dreams (don’t care if people think it’s not right for me to have dreams, I still dream)
  6. My house
  7. I’m funny (don’t care if lots of people think otherwise I still think I’m funny)
  8. I’m cool (don’t care if lots of people think otherwise I still think I’m cool)
  9. I’m clever (don’t care if lots of people think otherwise I still think I’m clever)
  10. I’m tall
  11. My memory (don’t care if lots of people think otherwise I still think I have a good memory)
  12. My ambition to be a scientist or a zookeeper or a wrestler or a goalkeeper or a falconer or a historian (don’t care if people think I can’t do these things …)

I think this reveals that he is quite comfortable with himself. The problem is that he doesn’t have that much faith in the outside world. I could go on but GERBILS are a pressing concern……