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Time

Finding time to live.

I think as you get older you start to realise the true value of time. We don’t have a finite amount of time to do the things we want to in life. In 2016 that point was brought into the starkest focus for me. Time can suddenly run out…..

So when the penny starts to drop the question then becomes Do you then do anything about it.

We all need to find time to really live.

I remember taking a job on the south coast of England. In Portsmouth. I was there for 6 months. It’s such a cool town, with much to see and do. It was new to me. In those 6 months I spent one afternoon wandering along the beach and looking at the naval history. That was it. The rest of the time I worked and basically just existed. Don’t get me wrong I had the opportunities to do much more with my time but I didn’t. Not much living went on there. Was I happy – certainly NOT.

Things are different now. Life has become a little too out of synch. Much feels out of my control. Beyond reach. Opportunities are not so apparent. But that fact doesn’t stop time slipping by.

Still need to find ways to live. Seize whatever opportunities that do present themselves.

We can do this. We can do some of that living.

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Autism

It’s Autism Awareness week. It does feel like it should be Autism Awareness Week every week, every year until we finally start to make some real progress. Let’s not kid ourselves as we have are only just starting down that road.

This years theme is centred around inequalities. Inequalities that have become even more stark and exposed during the pandemic.

I tell you what is unequal. Bridge building. It’s always up to the autistic person to try and build those bridges. Our society, our institutions and too many of our communities are not interested. They see Autism through inaccurate stereotypes. Something to be ignored or brushed under the carpet. We’ve all experienced that approach. Individuality is frowned upon. People need to be forced into set moulds and templates.

Yesterday I was listening to the words of a really wonderful, unique and brilliant teenager. He was talking about his struggle with autism. His daily fight with inequalities and ignorance. Why was it so hard for people to understand. He was saying that every day he heard so many false stereotypes. But in fact he had a sense of humour, he liked having fun, he liked having friends, he had feelings, he cared. He was as valid as an individual as anyone else.

That lad wasn’t different he was UNIQUE. We all should be. It’s a better world for that.

We all should be welcomed and supported.

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White rabbits

A cold, wind swept day. Definitely two jumper weather.

So it’s not quite sunbathing weather here. We did sit outside for a while. That’s with winter coats on while holding hot water bottles.

While outside we talked. Well when I say talked it was more about trying to reassure Hawklad. He was worried, really worried. April 1st and he had forgotten to say ‘white rabbits’. In Britain and also I believe in North America there is a tradition that saying ‘white rabbits’ as the first words of the new month brings good luck. Pilots had a similar superstition during the last war. Saying that phrase as the first words of each day apparently helped provide protection during the daily upcoming flying endeavours.

Hawklad has been doing the ‘white rabbits’ thing for a while now. I think he picked it up from me one time. I’m a bit annoyed with myself as I try to avoid Hawklad seeing me with any superstitions . Well this month he forgot. I would never give it a second thought but Hawklad was spooked. He takes things very literally. That can be a common personality trait with people with Aspergers. So I tried to reassure him but rather unsuccessfully. I will keep working on that. But it’s so difficult for him. More things to worry about. Life is so complicated…..

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Just ask once

I had a scheduled call with the bank today. Just routine stuff. Routine stuff which you would just a year ago pop into the branch and sort out at the counter. Nothing is routine now.

Anyway during the call the bank person asked a couple of not really banking questions that kinda through me

“Can I ask. Are you ok. Are you coping. It must be so tough. Are you getting the support you need.”

That’s the bank saying that……

Now before I go on – I am ok. I am coping. A bit of support would be nice but it’s not happening. But here’s the thing. I could so easily be doing not so well in this single parenting gig. Really struggling. Getting no support. Desperate. Looking over the precipice. Sadly many are. In fact forget the single bit, many people are….

I became a single parent in 2016 following the death of my partner. In that time the only official person to ask how I was doing was that bank person. No doctor, no school professional, no education specialist, no one from the local services. NO ONE in the support areas has ever asked what the bank person asked. How many people are struggling and nobody finds out. Nobody asks. I guess the assumption is that those that struggle will always put their hand up. Sadly that might not happen.

That is such a worrying thought.

Posted on by bereavedandbeingasingleparent · 45 Comments

Terminator

Kinda feels like the type of sky you get just before it all goes horribly wrong in a Terminator movie. This time no coming storm. Just me in the kitchen making a curry. Actually very similar when you think about it. Especially if you have ever seen or unfortunately tasted one of my Saag Aloo horrors.

As I watched that cloud formation role through my thoughts had moved from terrible cooking to more important stuff. Doesn’t that cloud look like a polar bear lying flat out on its tummy. Well it did to me….

We spent an hour or so playing the cloud spotting game today. Fantastic free garden entertainment, the kinda stuff you need during a prolonged lockdown. While we were cloud spotting I kept hearing a nagging voice in my head. We could be so easily playing this in a years time. It’s not unreasonable to assume that Hawklads anxieties and phobias will still be here in a years time. If so then our lockdown will still be in place in March 2022. That would make it TWO years. TWO years. Maybe that is what the clouds are telling me. There is a storm coming. A long protracted one.

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Schools Out

Schools Out, Schools Out for Easter.

The last day of term was marked with another school letter. Another positive pupil case with 45 other pupils in isolation for 10 days. Across the country infection rates amongst the 5 to 14 age group are rising since schools returned. On Monday some of the country’s lockdown rules are eased.

Well at least everyone is still wearing masks…..

On the way back from the vaccination centre yesterday I stopped off for petrol. Straw pole. Me and the person behind the till had masks fully on. One lady appeared to have a mask but she was carrying it in her hand. Another guy had a mask hanging loosely around his neck. Everyone else, no mask.

Lockdowns Out, Lockdowns Out for Easter

So the two week break has started. Started with sitting out in the baking sun. Talking with Hawklad on what he would like to do over the next few days. First ice creams of the break. Sat outside in the freezing wind.

Wooly Jumpers Out, Wooly Jumpers Out for Easter.

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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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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.

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.