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.

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.

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.

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.

It’s a plan

So the Government has set out the way forward. A roadmap. Starting with all schools opening on the 8th March with parents able to play golf or tennis is socially distanced way as soon as the school buses have left the street. Ending with getting the bunting out just before summer with every adult having been offered at least one shot of vaccine and virtually all restrictions lifted. That’s the plan.

This time they have introduced some gaps between the various stages to check on the impact. It’s an improvement on the first lockdown release. Not great but an improvement on the last shambles.

I’m already hearing people talk about booking summer holidays, binning the masks, going to nightclubs. The message is ‘soon it will be over, we will have won….’.

Sadly I’m not convinced yet….

  • Schools are being fully reopened against the advice of many of the Government’s own scientific advisers. Reopened with no meaningful additional safety measures put in place.
  • No plans to prioritise front line groups like teachers or police for vaccines. Apparently this will just complicate things.
  • No thought given to the Health and Care sectors that have been stretched to breaking point for a year now. They can’t keep functioning like this.
  • No plans for under 18 vaccines at all as schools are ‘perfectly safe’ and the kids can develop herd immunity without getting too sick. Yet no mention of the increasing number of under 18s suffering long covid symptoms. No mention of school outbreaks that are already happening even with 3/4 quarter empty schools. No mention of overcrowded classrooms with no ventilation. No mention of the scores of children going down with associated diseases which have been brought on as a result of a seemingly mild Covid bout. No investment in home schooling resources to take pressure off classrooms and create another avenue for education – just threats of fines for parents.
  • The plans assume that the vaccine is the way out of the crisis. No mention of virus related mutations becoming resistant to the vaccine. A real risk when you have high infection rates and delayed second shot vaccine delivery. The vaccine is good but it’s not 100% effective. Plus we just don’t know how long the protection will last for in individuals.
  • The plan is in tatters if a change in the virus makes current vaccines less effective. In that increasingly like scenario the vaccine programme has to completely reset and start again.
  • No thought on making changes to how we work, study and play to make them safer going forward. We seem to be happy going back to the status quo which so spectacularly failed only a year ago.
  • The plan assumes an acceptable level of Covid infections and casualties. This is not a zero virus plan.
  • No mention of the mental health crisis facing young and old in this country.
  • The Virus will still be here…..

So no I’m not planning for a pandemic free future just yet. I hope we are fortunate and the plan does work. But when do things ever go to Plan.

Monster

Unbelievably some snowdrops have survived the paws of the mad one. Flowers are always welcome especially when they herald the arrival of Spring. They are even more welcome when they sort themselves out. We just have to enjoy and try to stop the dog trampling them into the ground.

This morning was felt like another Groundhog Day here in our family lockdown. Very like every other morning. Doing the same things. That included trying to find some socks to wear. Where do they go. Ok I will reframe that question. Where does the sock monster put them. It’s not as if we live in a big house with loads of rooms. Only a month ago I had to buy 7 more pairs to boost the numbers floating round our little world. Sill struggling to find a matching pair.

But here’s the thing. Here’s another reason to be thankful of the lockdown. No one will see what I’m wearing. It doesn’t matter. Odd socks rule….

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.

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.