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 The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years.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 This is the only support he gets now as all the other services have already been withdrawn.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

Posted on by bereavedandbeingasingleparent · 61 Comments

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.

Posted on by bereavedandbeingasingleparent · 46 Comments

Challenging

So my first Covid vaccination is in two weeks. The second is at the end of April. There are still no plans to offer vaccines to children. So in effect it does really change our situation going forward.

As of tonight the full online school system will be turned off again. Hawklad goes back to trying to keep up with his classmates with whatever we can get our hands on. How well that works depends largely on the teachers and teacher assistants. Dependent on them finding the time to send class materials and work. Since September it kind of just about worked. Better in some classes than others.

I’m not entirely hopeful this time around. The teachers and assistants have to be involved in supervising the pupils doing Covid self tests. For a school with 900 pupils to do that twice a week is a massive task. Support for Hawklad is likely to be very limited going forward.

It’s going to be a challenging period for everyone going forward.

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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.

Posted on by bereavedandbeingasingleparent · 45 Comments

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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Monday morning

A Monday morning. A school at home Monday morning. Don’t you just love them….

“Dad have you got your thinking hat on yet….”

Do I ever have my thinking hat on

“Not really Dad but it’s another view on a tough question”

Ok I will make a hit drink and prepare myself…

Ok I’m braced now. Hit me with the question.

“How do you spell Trigonometry?”

Oh is that it. Wow I thought it as going to be a shocker. I’m almost happy. I can Cole with that. Life is good. Hang on why are you giggling….

“That’s not the question, thought I’d trick you”

Pants. You got me there. Ok what’s the real question.

“Its Religious Education. I have to discuss sexuality and homosexuality. What are the various religious views and discuss.”

Wow…

“Dad I think you would call that a 3 coffee question.”

It’s definitely is and it’s definitely not a question for an early Monday morning.

Posted on by bereavedandbeingasingleparent · 61 Comments

Mist

I don’t know why but as soon as I saw our morning sky I immediately thought of two opposing medieval armies preparing for battle. Just waiting for the mist to lift before they crash into each other.

Our area has had so many bloody battles dating back to Viking times. Who is to say that these very fields have not witnessed that grim sight.

Today’s grim sight was restricted to this unshaven, unkempt Bloke with zero fashion sense leaning against the fence. Coffee cup in hand, exposing his partly covered hairy legs to potentially the ghosts of the past. I guess in years gone by I would have opted for the kilt look. Need to get the air onto those ‘airy knees.

Mist is an apt way of describing my current thinking this morning. After a year of lockdown (now just two weeks short of that anniversary), I still can’t see the way forward. No nearer establishing when (or if) Hawklad will feel able to return to the outside world. Is it school or permanent homeschooling. Will my job survive. When will be our next holiday or excursion. Are my dreams on hold or permanently cancelled. Will I ever get to where my heart desperately wants to go. Is that it for concerts or football for us. When will we see friends and family. Is that it for hugs. Is the world still out there. Has anyone even noticed that we aren’t part of the crowds anymore.

A pandemic year and I still can’t answer those questions.

Mind and hope mist.

That is not a great feel.

Posted on by bereavedandbeingasingleparent · 60 Comments

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.