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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.

Posted on by bereavedandbeingasingleparent · 63 Comments

It’s cooking Jim but not as we know it

Warning this post contains some disturbing baking images.

This house had an idea. Some next level pancakes….

Not content with messing up normal pancakes let’s go a stage further. Pancake sandwiches. So what filling could we go for?

Chocolate biscuits. Carefully warmed chocolate biscuits. How hard could that be.

First Try….

Erm…. As Spock would say ‘it’s a chocolate biscuit filling Jim but not as we know it’.

After a number of other shocking tries we finally produced this….

We can officially call this a warmed chocolate biscuit filled pancake sandwich.

The message here. If keep throwing punches, you might be the worst boxer ever, but eventually one will land.

Posted on by bereavedandbeingasingleparent · 41 Comments

Frustrating

The sun goes down on another school at home day. It was one of those days where it feels like for every step forward we took two giant steps back. Such hard work.the really frustrating thing is that it wasn’t the actual learning which was the issue today. No the frustrations came from repeated system crashes, missing content, confusing instructions, formatting disasters and online tests that will only work with exactly the right spelling and format.

We can make home schooling so much easier for the pupils than this…

So with the frustrations still ringing in my head another school communication arrived. All about the required Covid testing to support the schools reopening next week. Each family will be required to self test families using the rapid result kits TWICE a week. On top of that all pupils will be tested with the same kits once a week in school.

My one question is that if our schools are completely safe and not hubs for virus transfer (according to our PM) – why is this level of testing required…..

The school letter also apologised to parents for the confusing over masks in the classroom. A few days ago the PM told schools that masks had to be worn in the classroom. Our school wrote to parents to inform them of the new rule. Unfortunately the rule has now changed again. The PM has now said they are only recommended and school can’t enforce them.

More frustrations……

Posted on by bereavedandbeingasingleparent · 63 Comments

Searching

It is a beautiful planet.

What is never beautiful is my food skills. What words are more appropriate.

Abomination

Shocking

Horrible

Disaster

Dreadful

Petrifying

Well today I almost outdid myself. Nearly messed up the easiest thing. All I had to do was make strawberry jelly. The supermarket didn’t send the Jelly Cubes but that was not a major issue. I had rather cleverly put aside a packet of the powder jelly just in case.

So I came to make the said jelly. All I had to do was add boiling water, stir then put the bowl in the fridge. So I emptied the powder into the bowl, added the water and stirred.

Ok why is strawberry jelly brown coloured……

I continued to stir expected it to turn red eventually. No that is definitely brown. Now it was time to check the jelly packet. Ok ot was the same shape as a jelly packet. The same colour as the normal brand of jelly we buy. BUT the words STRAWBERRY JELLY did not feature that prominently. What did feature prominently was the words CHINESE BROWN GRAVY.

In my defence why would you put Brown Gravy in a bright Red Jelly looking packet…

Jelly is off today’s menu, Stir Fry is strangely very much on….

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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.

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Gone, gone, gone

Well after many many weeks its gone. Our own lake in the farmers field has finally gone. We’ve had many of these lakes in our time here but not one this big or so long lasting. It’s provided many photo opportunities and we have grown very fond of it.

It will be back. Hopefully not during the next few months. If I does then Spring and Summer have been monumentally bad.

Until next to our unnamed lake, enjoy the rest.