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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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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 The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years.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 This is the only support he gets now as all the other services have already been withdrawn.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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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.”

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Abstract

Let’s be honest, it’s not really sunbathing weather here in Yorkshire. It’s ‘let’s see how many layers of clothes I can squeeze under the down jacket before it bursts at the seems’ weather.

“Go on then Dad, can you see it”

What is that supposed to be again.

“It’s an abstract artist’s interpretation of what our market town looks like.”

No that’s not really jumping into my brain that interpretation.

“What do you see then Dad.”

A series of random line squiggles and odd shapes. Forming what can only be described as a incoherent mess.

“Exactly Dad. Apparently that’s the town skyline and its most iconic landmarks.”

Really. If it’s most iconic landmarks then I’m certainly not seeing traffic jams, floods, not open at weekend signs, pizza takeouts and hordes of parking enforcement officers.

“Dad, Aspergers clearly doesn’t get abstract art…”

It’s ok Hawklad, Dads don’t get it as well.

“I’ve got to produce my own version of that now. Really…”

Shall we just put a pot of ink and a piece of paper in with the gerbils and let them get creative.

“Would be a good idea but the gerbils eat everything in front of them”

“Well you can help me do it.”

Ok do you want me to draw as well.

“No I‘ve seen your artistic skills. Look at the state of my hair. No you can do something your better at.”

Ok you name it.

“Go and find some chocolate for me please”

I can do that…

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This time

I can’t blame him for these, this time. But it does explain why he keeps coming in the house with muddy paws.

I had a post yesterday about Autism. When I wrote it things seemed ok with it. But then something happened. I happened….

I’m still working through this pcurrent bout of depression. Won’t be the first or last time I do this. When depression becomes DEPRESSION with me I start to doubt myself. Question my worth. That’s what happened yesterday. I reread the post and didn’t like it. The words were wrong. Uncertain of the message. Why was I bothering. If people want to read about Autism and Autism Patenting then they would be so much better off going to other blogs. Go to a blog like Robyn’s wonderful one. Nothing I said could change my mind. The voices in my would not be satisfied until I deleted the post. Eventually that is what happened.

Today the voices are not so strong. I guess today the post would have had a slightly better chance of being published. With my depression it comes in waves. Bad days then better days. Will be that way until I finally get on top of this run of D. In the meantime I will plod on. Trying to not listen to the voices in my head too much. Focusing on those things in my life which bring joy and happiness.

I can do this

We can do this.

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The future

The National Autistic Society has carried out research on the reality of adults living with autism spectrum disorders. It’s a sobering read.

I just want to highlight some specific lines in the report.

49% of adults with autism or Asperger syndrome are still living at home with their parents. 65% of these adults have had no community care assess- ments and are therefore unlikely to be known to the statutory agencies who should be supporting them.

31% of adults at the lower end of the autism spectrum are still being cared for at home, despite their high level needs. 45% of parents believed their son or daughter required 24-hour care, and only 15% thought they could live in sheltered or shared accommodation.

Only 3% of adults at the higher end of the autism spectrum are living fully independently, and a further 8% are living independently with some regular professional or family support.

As the report points out Families are picking up the care responsibilities in the UK associated with autism. Repeated Government’s have buried their heads in the sand. The current government unbelievably has probably set the bar even lower.

Like many families around the UK (and worldwide) my thoughts are increasingly focusing on the future. What will happen to Hawklad as an adult in our society which is so badly setup for those on the spectrum. Let’s just say that its currently not an entirely reassuring feeling I have. Yes I’m worried.

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Autism

It was such a grey day today. Couldn’t find anything to photograph so let’s see what happened a year ago. So back 2020 and guess what was back!!!! After a few really bad storms our lake made a brief appearance.

One of the questions I’ve been asked the most by other parents and a few teachers (but interestingly never by family and friends) is

‘Does Aspergers get better with age?’Even occasionally the question becomes ‘will he grow out of it….”

For every polite question I have trotted out the same answer

The condition will not change but the personality traits may well fluctuate over time. Some traits may become less noticeable while others may become more pronounced.

There is research in this area but I will leave others to discuss that. I will stick to my well trodden line of each child and adult is unique. With Hawklad it is very much on par with my standard answer. Some of the traits have become less apparent as he has got older. Some of his old repetitive behaviours like hand flapping are hardly seen these days. Where’s as some traits like fixation on objects and constant motion have stayed largely the same.

But there are also existing traits which are becoming far more pronounced. Verbal stimming (repetition of words and sounds) has dramatically increased with him. Phobias and social anxieties have increased but how I’m just not sure how much of that is down to the pandemic.

Aspergers is very much who Hawklad is. It’s his personality. It is him. Sadly there is still too often a fundamental misunderstanding of what being on the spectrum actually means. Not enough understanding of what it is to be Autistic. We have such a long way to go as a society.

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Weather

It’s horrid weather today so let’s go back a few weeks. That’s better.

I heard someone from the Government brush off a parent talking about her daughters genuine fears and phobias about returning to school. Her daughter doesn’t think her classroom and school is safe enough. From the sound of it her daughter is in a similar place to Hawklad. Really struggling. The interviewer cut off the parent saying that she was in the minority and the vast majority would see things much more positively. The message from the Government followed instantly. People and kids who had concerns and fears needed to listen to the majority. Schools are completely safe, just get on with it. Parents have an obligation to send their children into schools when they open.

Meanwhile back here the NHS Psychologist is just at the early stages of a treatment programme to try and help with Hawklad’s deep seated anxieties. No guarantee that the programme will ever work. This week’s task is for Hawklad to try and stand in the front garden for 1 minute. The message is don’t worry if you can’t do that. Even a few seconds will be a massive leap of faith. And if he can’t do it at all then we can try another week. Pushing people with significant fears and ingrained anxieties can do so much harm to their long term mental health.

The Government and the ‘Majority’ are not trained mental health practitioners. They have absolutely no idea what some people are going through. On this issue they can stand out in the rain and whistle for all I care.

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Frustration

It looks like Yorkshire. It feels like Yorkshire. Its moody, dark, windy and cold. It is Yorkshire. Some places are perfect for growing olives, oranges, pineapples and coconuts. The climate in some places are just perfect for fantastic wine. Here in Yorkshire the climate is perfect for Rhubard…..says it all doesn’t it.

How difficult can a Science test be.

The answer – a nightmare.

40 minutes to complete 20 questions. Sounds easy. Questions about Pressure, Force, Springs and Moments. Not easy for Hawklad but seemed to get there. Worked stuff out in his head. But that’s only part the story. The real story is trying to get the answers to the teacher. He can answer the questions in his head but then struggles to record them. It’s such an effort to type or write for him that he losses the answers he has in his mind. He can confuse himself or just forget. Even trying to write and type as he goes along doesn’t work, it seems to disrupt his thinking. Ends up going round in circles.

The other option is a scribe. But talking out aloud makes him nervous and makes it harder for him to answer correctly. Often what he describes is different to the answer he has visualised.

How frustrating must that be.

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Blink

Blink and it’s gone. Blue sky.

I remember back to my school days. Apart from living in caves and avoiding the dinosaurs, I was like most kids. Some stuff went in to my head easily, other stuff not so easily. Stuff about Physics, Mathematics and Geography went in. Subjects like History the dates would take a lot of effort to stick. Subjects like Chemistry I was ok. However French I was awful, it might as well have been a foreign language…. Biology I was not much better.

Today I was trying to help Hawklad understand Chemistry. He struggles to visualise chemical reactions. So trying to calculate reaction energy levels was a nightmare for him. Whatever we did he just couldn’t see it. That’s the thing with Hawklad, maybe that’s the thing with his Aspergers. He gets blind spots. They go beyond the dyslexia issues. With dyslexia if you read out the word then he can understand what he’s trying to learn. But these nothing seems to shed light for him. Some things he just can’t process and visualise. With a subject like French it’s a massive blind spot. History there are zero blind spots. But with other subjects he can understand most things really well but randomly encounters these blind spots.

Mathematics it’s decimals and volumes

Biology it’s cell structures and names

Design Technology it’s visualising 3D designs

Geography it’s grid references and grid lines

Physics it’s magnetism

Home Economics it’s cooking times

And Chemistry is chemical reaction equations

He can be going along swimmingly then encounter one of these areas and it completely stops him in his tracks. We kind of ignore them now. Blink and move on. Focus on all of the many areas he can make progress on. Hope that the blind spots don’t come up too many times in his main exams.

At the moment that’s our plan.