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Autism

It’s Autism Awareness week. It does feel like it should be Autism Awareness Week every week, every year until we finally start to make some real progress. Let’s not kid ourselves as we have are only just starting down that road.

This years theme is centred around inequalities. Inequalities that have become even more stark and exposed during the pandemic.

I tell you what is unequal. Bridge building. It’s always up to the autistic person to try and build those bridges. Our society, our institutions and too many of our communities are not interested. They see Autism through inaccurate stereotypes. Something to be ignored or brushed under the carpet. We’ve all experienced that approach. Individuality is frowned upon. People need to be forced into set moulds and templates.

Yesterday I was listening to the words of a really wonderful, unique and brilliant teenager. He was talking about his struggle with autism. His daily fight with inequalities and ignorance. Why was it so hard for people to understand. He was saying that every day he heard so many false stereotypes. But in fact he had a sense of humour, he liked having fun, he liked having friends, he had feelings, he cared. He was as valid as an individual as anyone else.

That lad wasn’t different he was UNIQUE. We all should be. It’s a better world for that.

We all should be welcomed and supported.

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White rabbits

A cold, wind swept day. Definitely two jumper weather.

So it’s not quite sunbathing weather here. We did sit outside for a while. That’s with winter coats on while holding hot water bottles.

While outside we talked. Well when I say talked it was more about trying to reassure Hawklad. He was worried, really worried. April 1st and he had forgotten to say ‘white rabbits’. In Britain and also I believe in North America there is a tradition that saying ‘white rabbits’ as the first words of the new month brings good luck. Pilots had a similar superstition during the last war. Saying that phrase as the first words of each day apparently helped provide protection during the daily upcoming flying endeavours.

Hawklad has been doing the ‘white rabbits’ thing for a while now. I think he picked it up from me one time. I’m a bit annoyed with myself as I try to avoid Hawklad seeing me with any superstitions . Well this month he forgot. I would never give it a second thought but Hawklad was spooked. He takes things very literally. That can be a common personality trait with people with Aspergers. So I tried to reassure him but rather unsuccessfully. I will keep working on that. But it’s so difficult for him. More things to worry about. Life is so complicated…..

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Needs must

Taking just a few moments to breathe. To enjoy what is close by. The beauty in life. The simple things.

A report on the news was talking about the UK Covid vaccine strategy. Currently no plans to extend shots to the under 18s. A child vaccine might be licensed after Autumn in some other countries. Again there are no plans to roll that out in the UK.

Ok so unless there is a real shift in the trajectory of the virus then we are on effective lockdown for the rest of the year.

That makes seeking out those moments to breathe even more important. If that means getting on my hands and knees, then so be it. Needs must.

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Vegetate

I’ve been trying to practice yoga and tai chi for months now. I diligently watch and follow the videos. All the really glossy and professional videos. I was trying again this morning. Following the instructor through her perfect routine. Even her dog sits beside her perfectly. Never moving. In the background the gentle sound of peaceful music. Perfect.

Meanwhile in deepest Yorkshire.

A muppet is seamlessly moving from one body creak to the next groan. Losing balance and crashing into furniture. Constantly fearing my pants are going to split under the galactic pressure being exerted on them. Every time I hit the ground a mad dog instantly leaps on me and I replay the Bill Murray Ghostbusters scene – I’VE BEEN SLIMED. And no gentle sound of peaceful music here. Rather the sound of derision and laughter….

“What on earth are you doing Dad”

“If this was on TV it would be banned”

“You look a right sight”

“Funnier than a Will Ferrell movie”

“Say that again Dad. Golden Rooster. More like drunken Pigeon”

“Are you supposed to be balancing on one leg or head butting the wall”

“My Dad has turned into Homer Simpson”

“Please never do this when any of my friends visit”

“Your just embarrassing yourself now”

Technically speaking this probably means that I still have a long way to go on my spiritual exercise journey. Or more likely …. time to get the mega pack of biscuits out and vegetate.

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Terminator

Kinda feels like the type of sky you get just before it all goes horribly wrong in a Terminator movie. This time no coming storm. Just me in the kitchen making a curry. Actually very similar when you think about it. Especially if you have ever seen or unfortunately tasted one of my Saag Aloo horrors.

As I watched that cloud formation role through my thoughts had moved from terrible cooking to more important stuff. Doesn’t that cloud look like a polar bear lying flat out on its tummy. Well it did to me….

We spent an hour or so playing the cloud spotting game today. Fantastic free garden entertainment, the kinda stuff you need during a prolonged lockdown. While we were cloud spotting I kept hearing a nagging voice in my head. We could be so easily playing this in a years time. It’s not unreasonable to assume that Hawklads anxieties and phobias will still be here in a years time. If so then our lockdown will still be in place in March 2022. That would make it TWO years. TWO years. Maybe that is what the clouds are telling me. There is a storm coming. A long protracted one.

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Schools Out

Schools Out, Schools Out for Easter.

The last day of term was marked with another school letter. Another positive pupil case with 45 other pupils in isolation for 10 days. Across the country infection rates amongst the 5 to 14 age group are rising since schools returned. On Monday some of the country’s lockdown rules are eased.

Well at least everyone is still wearing masks…..

On the way back from the vaccination centre yesterday I stopped off for petrol. Straw pole. Me and the person behind the till had masks fully on. One lady appeared to have a mask but she was carrying it in her hand. Another guy had a mask hanging loosely around his neck. Everyone else, no mask.

Lockdowns Out, Lockdowns Out for Easter

So the two week break has started. Started with sitting out in the baking sun. Talking with Hawklad on what he would like to do over the next few days. First ice creams of the break. Sat outside in the freezing wind.

Wooly Jumpers Out, Wooly Jumpers Out for Easter.

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Somersault

Almost a summer sky and most definitely a winter wind – it’s freezing. Definitely a two jumper day…. But still nice. Would have loved to be outside more but pesky school got in the way of that plan.

After two hours of trying to figure out how to insert graphs into an online test document…

“Dad I thought you had a degree in computing.”

Well kind of.

“Well it’s not much use here. Admit it you spent those university years in the bar…”

And on the sports pitches. Don’t forget in bed as well.

“Well that’s not helping with this is it Dad. Might as well ask the toilet seat for help.”

To be fair I focused on Artificial Intelligence and Expert Systems, not stupid school packages. What you sniggering at Son….

“You. Muppet Dad. Are you sure it wasn’t Artificial Incompetence. Useless. Looks like you’ve just crashed the system now.”

Yes definitely crashed. Think it didn’t like me pressing all the keys at the same time in a slightly angry manner.

“How on earth did they let you into a university.”

I think they were desperate. I was late for the entrance interview as well. I got lost and ended up at the wrong university, in the wrong city. When I did arrive i was 3 hours late only to find out that I had the wrong day as well. I had come a day early.

“No wonder as a toddler I would talk with mum and just bash you over the head with anything I could find.”

I’ve still got the bruises.

“No Dad those are from last week where you tried to show me that you could still do a somersault on the trampoline. “

I almost did it. Just my bum got in the way.

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Grim

Just let this research finding sink in (press on the link for the details)

Autistic people are four times as likely to experience depression over the course of their lives as their neurotypical peers

In the UK the approach is that parents have to fight tooth and nail for any kind of support. The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years. Adult autism support is basically non existent for the vast majority.

In our little family world Hawklad is struggling. His anxieties are on the rise. He is stressed out. Trips outside of the house and the garden are currently impossible for him. We are fortunate in that we do have access to some psychological support. Sadly from a Team who are stretched to breaking point. But we still have some support. For how long that support continues – who knows. He’s a teenager. This is the only support he gets now as all the other services have already been withdrawn.

How many other of autistic families are facing the same challenges. TOO MANY. How many autistic adults have been let down by society. TOO MANY.

This is grim.

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Toe

Some things in life are naturally beautiful and guaranteed to make you smile.

One of those days. Not enough sleep. School at home was a pain in the buttocks. WordPress continued to act like an incompetent evil overlord. An upcoming concert I was really looking forward to (which had already been rescheduled from last year) was cancelled. Smashed some cups (unintentionally). THEN Hawklad decided to walk into wooden table and clearly has broken his little toe. At least I can see evidence that some of my genes have passed down the family line. Nothing we can do except get him to rest up for a few days.

So in need of distraction I decided to strike one item off the growing DIY list. Let’s put the external mail box back on the wall. Much drilling, much banging, much muttering, much screwing. The mail box was up. Not a bad job at all. Level and well secured. Shame it was upside down…… Not sure what the Postman would think of a letter slot at the bottom. Not the first time my DIY has taken a walk to the a Southern Hemisphere. Summed up the day…..

On days like this those things that make you smile are even more important. Even more treasured.

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Motivation

A number of comments over the last few months have brought up one word. Motivation. Motivation for the parents to keep grinding through the homeschool days. Motivation of the teachers to keep entering cramped and unhealthy classrooms to keep trying to educate. What are the real motivations of the Government. AND most importantly the motivation required for pupils to keep trying to learn when the odds are stacked against them.

“Dad, REALLY, what is the point…”

What’s wrong Hawklad.

“Nothing from best lesson of the day. Not a thing yet the next lesson manages to flood me with stuff after stuff on what the various religions say on same sex marriages.”

“Don’t get me wrong it’s an important thing. But not in this much detail. Frankly I’m bored now. Very bored.”

“They tell me in great detail what others think but haven’t bothered to ask my opinion.”

Well Son it’s the last lesson of this for a week.

“Well it will be back next week talking about the same things again. Not sure it’s possible to be anymore bored than I am right now.”

“What is the point…. well now they have given homework out on this. Tough – I will just take the punishment. I’m not doing it.”

Well find something else to learn about.

“I have. I watched a video on Maggie Thatcher and how she was booted out of office.”

Good for you.

“It’s not something that will be on the exams as school don’t cover it. But stuff it. Its better than the stuff we are being told what to learn about today. What is the point.”