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.

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.

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……

Sunset

What a lovely sunset.

Last night Hawklad reminded me that this Sunday last year was when we first talked isolating. I remember it quite well. A Sunday evening. I was sorting out the school bags for Monday morning. Hawklad came into the room and asked how did we know that this new virus wasn’t already in school. How did we know the bus was virus free. Should we stay off school until it passes. I tried to reassure him but I could sense his anxiety. I emailed the school to let them know that he was anxious. When he’s anxious it can throw off his ability to sit still and concentrate.

He did get to school the next day but not by school bus. He asked to be driven in. A few days later school proved too much for him and our family lockdown started. Soon the world changed.

It’s odd looking back. Its hard to believe that we have been isolating for nearly a year now. I wouldn’t have dreamed that I could have coped with that much isolation fit that long. A world suddenly constricted to our garden and house.

But we have…….

We can do this.

Out of focus

Spring is coming.

Have you ever tried to take a simple photo of a bush. A bush in Yorkshire. That’s Yorkshire where the sun might be out but it’s blowing an absolute howler of a Gale. The perfect weather for out of focus photography.

Out of focus.

To be fair that’s been me since 2016. Better recently but still not completely focused.

So many reasons for that but one thing stands out. Let’s go back to the summer of 2016. I’ve driven my partner into hospital for a short stay so they can conduct some exploratory tests. Our son in the back seat. What did we talk about. Can’t remember. I’ve tried but can’t remember. Probably talked about visiting and picking her up again on Friday. Probably about some jobs to be done. Maybe some shopping…..

When I returned on the evening she was sleeping so we never spoke.

I returned the next day. She wasn’t feeling too good and was having tests so I didn’t see her.

Friday I turned up and was taken to a separate room by the Doctor. Her condition had worsened overnight. The test results were appalling. She had at most a few weeks. She was drifting in and out of consciousness. If she woke then she would probably not be aware of who was around her.

That was it. No more conversations. We never discussed the new reality. The grim new future. The plans we had were in tatters. No new joint plans. As a result I’ve felt out of focus. Hesitant about my intentions. Trying to think about what we might have talked about and agreed if we had one more conversation. Guessing what she would have wanted. Trying to make decisions for the both of us.

It’s only recently that I’ve started to go fully with my views. Can I ever be certain what she would have wanted. It’s hard enough to work out what I’m thinking some days. So yes still probably out of focus but now it’s just through my eyes.

Daffodil

Look at this. The first daffodil. It’s always such a lift when they appear. The return of a bit of warm colour. Much needed. Can we now officially call it SPRING. For what it’s worth a quick and very unscientific check of the photos is telling me that they have arrived one day earlier than last year.

If only WP was that reliable. Scheduled posts not working. Finding it harder to post comments that actually appear. Random unfollows. Likes not working. Photos refusing to publish. Messed up editing. Yep I think the WP IOS app has beaten me. Need to get myself a better laptop and switch to the web based option. See if it works better with Windows.

But until then we will soldier on. Do what I can. Don’t get too worked up if it refuses to work properly. There a great quote from The Book of Joy. A quote which has Buddhist traditions but was also told to me bizarrely by a cricket coach who was talking about getting out of a bad run of batting form. Basically it says….. Pointless worrying about what you can’t control and why are you worrying about stuff you can control.

Ok let’s try to remember that. Forget WP and my troubles. Think about the things in my life that lift me up and that I love. That will help push the negative thoughts away for some precious moments.

We can do this.

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.

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.

Midday

That’s more like a Yorkshire midday. Very dark and brooding.

The sky may be bleak but it’s actually quite inspiring. Makes the landscape feel full of character and emotion. In a funny sort of way I prefer looking at this type of sky to a blue cloudless one.

Did I just say that!!

I came inside freezing cold, jet blasted and very very damp.

I guess the point I’m making is that in an ideal world I would have a view filled with snow capped mountains. It’s a climbers thing with me. I feel at home with the peaks. If I can’t have that view then maybe a view of the Sea. That is down to someone being brought up in a Yorkshire Fishing Town.

That is just not happening where we live. A small hill top 40 miles from the sea. The view we have is open farmland and countryside. Lovely yes but not on the surface that inspiring for me. But it does have something special. The sky. As we are on a hill top with no surrounding peaks or high buildings or trees …. we have a big sky. So I look to that for my inspiration. Hence my liking for a dark, brooding sky. The kind of sky that really deserves the old Hammer Horror movie treatment. Doesn’t have to be horror. A sky perfect for Jayne Eyre or Wuthering Heights.

I remember my mum would listen to sad records to cheer herself up. My partner would watch sad movies to lift the spirits. Which is kind of understandable when you have to live with me. I guess a brooding sky does something similar with me. It sparks my imagination. Helps me dream.

So that’s another item on the list of things to be thankful for. For me it’s so easy to fall into the trap of just seeing the bad things in my life. Depression brings all the bad thoughts to the front of my nogging. They end up dominating my thinking. Doing all they can to bring me down. But the reality is so different. I am so fortunate. So many wonderful things are a part of my life. Yes I’ve known sadness and loss but that’s the human condition. We will all venture down that road in our life’s. So that’s not unique to me. Life deserves to be lived. And yes that can mean smiling at a brooding midday sky.

So let’s dream under that sky. Shall I be Heathcliff or Dracula. Let’s not kid myself, with my looks it better be the Bram Stoker character then.

Meaning behind the door

My partner loved the Moors. She was always happy there. When our own family lockdown ends it will be one of the first places we visit again. It was one the first places visited after she had left us. It did take quite a while but we made it.

Is it really 4 and half years.

I have often talked about a vivid image that really helped me over that time. My grief felt like I was stood next to a closed door. A door that had suddenly locked shut and would never open again. I could see what’s behind the door. Memories. I can’t change or add to them. Just look at them.

So I had a choice. To stand by that locked door or take a leap of faith. Set off into the dark and see if I could find some new doors. Doors that are open allowing new memory experiences. I could either can actor or just a memory viewer.

I have mostly set off in search of new doors. Mostly…..

This door image has worked for me but I never fully understood its meaning. I always had a feeling that there was to it than life needs living. Why did it help with my grief. Why did it make me feel more at ease with myself.

I’m currently reading The Book of Joy by the Dalai Lama and Archbishop Desmond Tutu. Suddenly the penny dropped.

In the book they talk about grief and dealing with suffering. They made a simple point that really struck home. Grief can either help lift a person up or drag them down. The secret is the focus. If you focus on the person you have lost, what they believed in, what they hoped for, their dreams THEN grief can have a positive side. It demonstrates LOVE. It can motivate you to live. ‘A determination to fulfil their wishes’. But if you focus on yourself then grief can bring you down. Focusing on things like how can I cope, how can I manage as a single parent, how bad will my life become. Those thoughts are negative and run the risk of dragging a person down.

Suddenly my image has meaning to me. Remaining stood by that locked door was not about my partner. It was about me. I was doing what I thought I needed to do. My partner had hopes and dreams that would not be nurtured by me remaining by that door. To keep those hopes and dreams alive, I HAD TO MOVE. Searching for new doors is best for my partners legacy, it’s best for our son, and yes it’s best for me. The end result is much more likely to be positive and uplifting.

It’s taken me over 4 years to suss that out. I actually don’t feel to bad about that. It took the great minds of the Dalai Lama and Desmond Tutu to work it out for me. That’s not a bad couple of minds to defer to.

We can do this. It will take time but WE can do this.