Posted on by bereavedandbeingasingleparent · 57 Comments

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.

Posted on by bereavedandbeingasingleparent · 84 Comments

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.

Posted on by bereavedandbeingasingleparent · 46 Comments

Garage

Who would have thought a year a go that a trip to the garage would so resemble a decontamination scene from the movie Outbreak. You arrive and you are greeted by someone in a full face Perspex visor and gloves. A clear bag is held out at arms length for me to drop my car keys into. They are sprayed with something before the bag is closed. I’m asked a number of health questions and told to keep my face mask on at all times. Then ushered into the building through a roped off side door. I’m then directed to a clear screen and the masked service engineer discuss my 4 wheeled bag of rust. I’m then pointed to a tray with a car key – clearly recently sprayed. After I have picked the key up another person with full head protection takes through a separate door and pointed towards the service pool car parked in a separate roped off part of the car park. I’m then given verbal instructions on how to return with the car. I have to park next to the car wash in the roped off return zone.

Wow.

Kind of makes me wish I had cleaned my car now. It is a right state. Feeling guilty about that….

And if you think that’s decontamination. It’s not a patch on what I had to go through on my return to our house. Hawklad wasn’t taking any chances.

Posted on by bereavedandbeingasingleparent · 32 Comments

Pop Art

And still it shrinks. I’m going to miss it when it’s gone.

Back to school at home and back to the daily fun…. Started with the usual happy pep talk from a teacher. To paraphrase.

‘Remember I’ve set some work before the week off. It’s voluntary but I can see what people have done and how long you have spent on it. I am checking….I’m about to do your assessment….”

Ok….

Then I accidentally phoned the school. Who hasn’t done the ‘put the mobile in your back trouser pocket just to see how long it takes for your bum to unlock the phone and dial a number’ trick. The mobile can’t have been in the pocket for 2 minutes before suddenly I heard a strange voice coming from my nether regions. How is it that it takes me hours to figure out how to unlock the mobile, find the phone app, then repeatedly fail to type in the number. Yet my butt can unlock the phone and successfully call someone in a fraction of that time…..

So after I had apologised to school reception it was back to the usual fight with submitting pieces of work and trying to find the class work on Teams. Fights with explanations, hidden meanings and unclear instructions.

Quickly followed by the ritual Dad humiliation.

“Dad apart from Andy Warhol what other Pop Art practitioners can you name.”

Erm……..

“Ok can you at least name a few famous Pop Art pieces and before you say it, NO Godzilla doesn’t count.”

Erm there was that picture with about 100 Madonna’s replicated.

“Dad. You mean Monroe and it was 50 times…”

That’s the one. Then there was the soup tin. Erm Andy Warhol was in Men in Black 3, does that count?

So basically no help…….

But maybe my backside could become Pop Art. Probably not. Not sure how big the canvas would have to be to get 50 replicas of my butt on. But if they could then I could literally be sat on an important piece of avant garde culture. Sat on a fortune.

Posted on by bereavedandbeingasingleparent · 41 Comments

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.

Posted on by bereavedandbeingasingleparent · 40 Comments

Back

Everyday our little lake shrinks just a little bit more.

It’s Sunday. The last day of the Half Term break. Tomorrow the next leg of the school at home project commences again. Does it sound bad that I’m not looking forward to it.🤓🤬😱🤯

The delights of Zoom meetings and lessons. The word Zoom has replaced Cauliflower has the one that makes my stomach churn the most. The mandate to use Microsoft Teams then trying to work out which teachers are not using it this week. The soul shattering tiredness which ensues from the daily 630am alarm call. Trying to get my head round chemical reactions, tectonic plate theory and trigonometry. Trying to help with French while being unable to stop helping in German. Trying to explain coding to so dine with dyslexia when I don’t see the point. Not being able to find the right coloured pens and stationery. Failing to get Hawklads homework to submit by the deadlines. Emailing teachers to remind them that Hawklad is still here and still a member of the class. At home but not having the time for housework. Constantly fighting the urge to drown in a swimming pool of extra strength coffee and gorge on every cookie within a 10 mile radius.

Yep not looking forward to that starting again.

But it will be done, I just might go a bit grouchy….

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Shrinkage

The snow has gone. The temporary lake is starting to shrink. Signs that Spring is on its way.

Another work call confirming that the work plans involving me are as empty as the tyres on my bike which hasn’t been used since 2019. Thats completely airless. Not going to loose any sleep over that. No point. Maybe next year. A quick scan of the new job situation indicates a job market that is as fiat as my last loaf of bread which actually reduced in size when it should have risen. It really is just a case of battening down the hatches until things pick up again.

In our case that is not a band thing.

Hawklads fears are still there. If anything a bit worse. Absolutely zero chance of him being able to cope in the outside world any time soon. Getting through the front door is too much at present for him. Even me venturing out into the front garden really spooked him. So that’s stopped. The Front Door has not been unlocked in days. Once a day I sneak out the back gate and feed the birds, check on the rust bucket car, put the rubbish into the bin and pick up any deliveries that are sat on the front step.

Our world has shrunk further. The house and the back garden now is all that’s left. So no work allows me the time to focus on Hawklad. Try to give him the support he needs. Try to give him a reasonable quality of life and as much fun as can be found.

Hopefully Spring will arrive and the garden will become more enticing. It will be nice to sit outside with a coffee without 25 layers on. But I will miss our lake…. miss the world.