Nightmares

3.30am (Yesterday)

Dad I’ve had a nightmare. The Great Heathen Army came looking for me. They keep swarming over the hills towards us”

That time during the night is not the optimum time for my brain to discuss Norse Armies. Especially ghost ones. But parents find ways, especially when they are beyond tired. You just want the best for your kids. It’s tough when you see them distressed.

What weapons did they have.

Blood covered swords, hammers and axes

Ok now imagine them with some silly weapons. Something like sticks of rhubarb.

Bananas”

Perfect. What are they wearing

Viking clothes”

No make them wear something silly, sillier the better. The least scary thing you can think of.

Summer dresses”

Perfect. Did you see the Viking Leader.

Yes he was massive. A fearsome warlord.”

Would he be so fearsome if I was the warlord.

Your not massive or fearsome”

That’s the point.

Dad you will need a name. Your version of Erik the Red, Snake in the Eye, Forkbeard or Ivar the Boneless”

Ten minutes later much laughter. Some of the names are unprintable. But

  • Erik has lost the remote control
  • Halfdan Apple Crumble Slayer
  • Bagpuss the soft furry one with fleas
  • Ubba the demon cook
  • Sigurd my pants are buried in the garden
  • Sven Fork Lightening Farter
  • Ivor Big Arse

Tonight a bit of silliness quelled the storm (or to be more precise the Ghost Viking Army). Son found sleep again. But it’s tough. Tough on kids stressed out. Tough on the patents. My batteries seem pretty flat. But that’s what you get when you sign up to be a parent.

Sleep won’t come for me but at least I can have some bizarre daydreams about me being a Viking warlord, running over the Yorkshire hills in my finest summer dress armed with a stick of rhubarb and a banana. Now that is the stuff of nightmares.

Doris

What are you doing….

We had walked the dog for a couple of miles when we came to an overgrown field. Not our usual route but son headed down this way when he noticed a group of walkers approaching in the other direction. Son stopped suddenly and examined one particular plant.

“Dad what colour do you think this will be when it blooms. The obvious colour would be pinky red. But you never know. We will need to keep coming back to check”

He started piling rocks up into a stack.

What are you doing……

“Making a cairn so we can identify the exact plant for our return visits to see Doris”

The plant is now called Doris. He always gives stuff that he likes or is interested in pet names. I think he may have got that from my mum. She did the same. But she was sneaky. She only used one pet name for everything. Pidge. Family, friends, pets, strangers you name it … all called Pidge. That way she never forgot a name.

From now on we will take this new route via Doris. It is now part of the daily routine and will be set in stone. These sort of things are so important to our son. Routine and focusing on particular themes and objects. I remember a Doctor who was extremely keen to find a course of treatment to help stop ‘the obsessive traits which are common in kids like your son’. The Doctor was clearly confused when we (son included) politely refused. It’s who he is. His personality. It’s our son. AND most importantly he likes the trait. Why should he change to fit in with societies blinkered viewpoint.

So in a few moments we are off to see Doris. You know what … I’m quite look forward to it as well.

Bluebell Wood

We have a wood about 2 miles walk from the village. It’s a beautiful place. But for one month it becomes truly magical. It becomes carpeted in bluebells. Hence it’s nickname – Bluebell Wood. For the last few years the Bluebells have appeared mid April. So off we marched.

On the way we passed the farmers ‘manure’ heap.

Pointing at it “Son that is some cow….”

He just looked at me with that puzzled look. “Dad the herd is about 100 strong. It’s probably taken all the cows the last few months to produce that”

So we moved on. Now I remember using the same joke last year and getting the same response.

Anyway we arrive at Bluebell Wood.

Currently it is called ‘The not at all Blue Wood”. Anyway it’s still beautiful and son had many a good dream.

As we arrived back home Son pointed to the side of the door. In the end we got a bit of a flower fix.

Get on your back..

It’s been a ‘on your back’ sort of day.

Not just for the pets.

First we played football in the garden. Son wasn’t keen on using his boots so I dug out mine as well. As a I put my boots on I warned son that they would be hard to walk with on the pavement. He was fine but I perfectly demonstrated the point by going ‘arse over tit’.

About an hour later I was again on my back. This time I made the mistake of trying to walk on our bathroom floor with just socks on. Sheet ice is easier to walk on.

While I was on my back I spotted a sheet of paper under a sideboard. It was a photocopy of a checklist school had given us years ago. A checklist about Aspergers. Son was keen to see how he compared to the bullet points.

Social interaction
Children with Asperger’s disorder might:

  • start interactions with others but have difficulty keeping a conversation going – rarely now
  • interact with people if they need something or want to talk about something that interests them, but not because they’re genuinely interested in other people – never
  • interact in an awkward and stilted way – for example, they might avoid eye contact while speaking or interpret things literally – sometimes
  • interact more easily with adults than with children – rarely now
  • not show emotion or empathy. – rarely

Communication and language
Children with Asperger’s disorder might:

  • be very verbal – for example, they might label everything in a room – sometimes
  • join words together at the usual developmental stage (around two years) – sometimes
  • communicate with others about their own interests –sometimes
  • use a flat or monotone voice – rarely now
  • answer questions, but not ask questions if the topic doesn’t interest them. – sometimes

Repetitive or persistent behaviours
Children with Asperger’s disorder might:

  • have restricted or obsessive interests that make them seem like ‘walking encyclopaedias’ about particular topics – definitely BUT his range of interests is much wider than mine.
  • prefer routines and rules – 100% Definitely
  • not respond well to change. – 100% Definitely

As you can see the checklist was a bit mixed in comparison to our son. All kids (and adults) are different with their own specific traits. And these traits change over time. Also it is common that Aspergers will not just be the only diagnosis – frequently it interacts with other medical and psychological conditions. I’ve not seen a checklist yet which completely ties in with our son. Probably never will.

Maybe one day we will have a go at a specific one for our son. One that takes account of Aspergers, Dyslexia, ADHD, Dyspraxia. But not today – back and buttocks are too bruised for that. But off the top of my head (or from the centre of my bruised posterior) maybe the above checklist could have added:

  • Clumsy
  • Takes language literally
  • Likes lining items up in straight lines
  • Struggles socially when ‘new faces’ are in the room
  • Can be socially anxious
  • Flapping hands
  • Poor fine motor skills
  • Difficulty understanding the concept of time
  • Can become distressed in locations with excessive sensory levels. Noise, bright colours, wall patterns
  • When sensory overload is encountered can go into meltdown

I will leave it at that. Let’s not assume all people with Autism and Aspergers are the same with identical traits. It’s not just stereotyping round Rainman. Equally it’s not just about stereotyping around being geniuses like Einstein. Everyone is unique.

Now it’s time to lie down on my front and rest my battered back…

Super Hero

It was another work day. Son stayed in the car mostly. Middle of nowhere so it was just us two. I could park the car right next to where I was working. So he was watching movies or dreaming or telling me what I was doing wrong. His day sounds so much better than my work one.

On the way back home.

Dad I’ve been thinking about a new Super Hero character. I think we need one who has Aspergers.”

So what is his or her special abilities.

I think it’s a her. You don’t often hear about girls with Aspergers in the movies tends to just be boys or men”

All Super Heroes have faults. Maybe not Captain America. But I think ours will be a bit of a loner. Might come across either shy or awkward in crowds. Avoiding close contact and certainly avoiding things like hugs. Will often believe what people tell her when people are joking. Always very anxious. The public might think our Super Hero is a bad person as she is seen as being different.”

Anyway her special abilities are:

  • Super senses – hearing, feeling, seeing
  • Super computer of a brain
  • Super memory
  • Super strength honesty
  • High pain threshold
  • Seeing things that other people can’t see
  • Solving number patterns
  • Super good at interrogation
  • Can sense who is good and who is bad
  • Interacting and communicating with animals
  • In tune with the natural world so can harness its awesomeness
  • Fuelled on Pizzas

Speaking of Pizza, how about an early pizza tea”

Who am I to argue with Superpowers. It’s Pizza time.

Early morning coffee

Dad what time did you just say we have to leave the house for work on Sunday

6.20am.

“That’s so early it’s almost back into 2018”

Sorry we need to drive 40 miles so we can get to a briefing starting at 7.45.

“Dad I may have to join you in having a coffee that morning”

Yes I suspect my current Decaf diet will be scrapped at 6am Sunday. Son’s comments about Coffee made me smile. A couple of years back I came across some research that seemed to suggest that Coffee was starting to be used with some kids with ADHD.

Dopamine levels in the brain need to be within a very narrow parameter range for the brain to operate at optimum levels. A body of research exists that seems to support the theory that with ADHD Dopamine levels are too low and outside the optimal parameters. Stimulants like caffeine raise Dopamine levels. The argument is that stimulants can then be used to raise Dopamine levels in people with ADHD to optimal levels. This will have a positive impact on concentration and attention levels. So a cup of coffee might be a good idea for kids with ADHD (like our son)????

But too much caffeine may cause things like stomach trouble, raised heartbeat, sleep problems, irritability……. It’s an addictive psychoactive stimulant drug.

Then you factor in Autism. Little research exists on the effects of caffeine here. Does it help. Does it hinder.

When I spoke to the health professionals the advice ranged from ‘worth a go’ to ‘its a bad idea’.

I’m no medic so I will continue to play it safe. So early on Sunday double standards will be adopted. I will have a strong coffee whereas our Son will have a glass of orange juice.

Money is clearly everything.

Our local council is North Yorkshire County Council.

Over a year ago our Local Council agreed to make savings of £2m to its service budget. Unbelievably our Council decided to end free home to school transport for disabled and special needs pupils aged 16 to 18 years old.

This is the same council who does not provide any specialist support to kids with dyslexia.

This is the same council who has been cutting the size of Educational Health Care Plan grants to disabled and special needs kids who somehow manage to get through the tough pre qualification assessment. Penalising the very kids who need the highest level of support.

Today our Conservative Council – that’s the same party our Prime Minister heads, thats the Prime Minister who recently said ‘I’m on your side” – announced that the first year of the cut has resulted in a £800k saving. The Council reviewed itself on this issue and concluded that “the implementation of the policy has not had a detrimental impact on the ability of young people accessing their education”

Well that’s well earned pat on the back for the Council then. Is it just me who gets beyond severely pissed off with this – please tell me if I’m missing the point with this because I will happily crawl back into my little hole if it is just me.

Maybe some of our esteemed councillors should venture out of their plush council chambers, get into their Jaguar, BMW or Mercedes cars and actually see what the real world is like for a change.

Stress buster

I would love to claim that is my flower in my perfect garden. Sadly it’s next doors flower which is growing through a hole in our fence.

My Dad was a fantastic gardener. I’m sure he looks down on our garden and just sighs. He probably utters several words in Yorkshire including wasak, berk and hacky. Followed by wouldn’t grow my rhubarb in that mess.

Dad loved gardening. It was his go to hobby.

That got me thinking about the stuff which I enjoyed doing. My stress busters.

  • Playing football – stopped when son was born
  • Watching Newcastle United play and lose – seat now given up
  • Playing cricket – stopped when son was born
  • Climbing – stopped when the world changed
  • Walking with friends – stopped when the world changed
  • Going out for a drink with friends – stopped when the world changed
  • Astronomy – old telescope is not useable anymore and not done any serious star watching since the world changed
  • Going out for a meal – not been out for a meal since the world changed
  • Just enjoying being held by your soul partner – stopped when the world changed
  • Going to concerts – thankfully son will let me tag along with him still. So it’s not a complete wipeout

Need to do some thinking. Need to think about activities that will take some stress out of the system – which I am sure will help me become a better parent. Stress is building.

I really need to find more hobby time. I certainly need to find more time to sort out the outside mess. Unfortunately gardening stresses me out. Sorry Dad.

Kinda sad

It’s been one of those days. Slightly sad that those lovely Swiss Sunday Mornings are gone. Don’t get me wrong I am eternally thankful to have had those opportunities in the past.

Normally I try to keep the school holidays free to focus solely on our son. It’s the least I can do given what he’s been through.

But this Easter I need to get some cash in so I am going to have to work a bit. One day might be a 10 hour day. I don’t have any cover for our son so he is going to have to come with me. Yes he will still get time with me but it’s going to be so boring for him. It’s such a waste of his holidays. This makes me so sad and so frustrated. He deserves better than this. Will have to find a way of making this up to him.

Lost in the woods

Can’t see the woods for the trees.

That seems to sum up my thinking recently. So many things going on. So many things to sort out. Feeling tired. Feeling like a bout of depression might be heading my way. But not really sure the route cause. So it feels like I am aimlessly wandering around the wood of life, attending lots of trees but ultimately getting lost.

Maybe we need a break. We haven’t had a holiday or extended break since 2015. In fact we haven’t had a night away in those 4 years. We are certainly not unique. Many have gone longer than that without a break.

It is not so easy. Holidays are expensive, especially when you take them during school recesses. It’s not easy for our son as he struggles with crowds and new environments. Causes him so much anxiety. I also worry (and Son does) about something happening to me while on holiday – no backup so son could be alone, stranded miles from family.

As a result I suspect 2019 will continue the holiday free trend.

Don’t get me wrong, I don’t want it to sound like Home is a Prison. It really isn’t. Son almost sees it as our castle. A place of safety which can keep out the alien world. Plus Staycations can be really fun and very cheap. So how to fashion a break while Staying at Home. Maybe plenty of day trips to quiet locations. Lots of games and fun things.

I really need to think about this. Probably need to get out of the wood first though.