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3am

Last night I was tired. Unusually tired for me. But it was one of those pesky tired setups. During the evening I could feel myself nodding off. Plenty of those ‘just starting to drift off while sat on the settee – then suddenly woken by those cataclysmic sudden neck snapping forward’ moments. This went on all evening until it was bed time. But then I just wasn’t tired. Pigging fiddlesticks……

Finally sleep came but all too soon…..

“DAD, DAAAAAADDDD!”

What’s up son.

“Dad I’ve forgotten, sorry we’ve forgotten the art assignment.”

Ooh yeh, that one that isn’t due in until the 12th.

“That’s the one, But ITS THE 12th.”

Oh big pants. Can you do it as soon as you get up?

“No it’s due at the start of the first lesson.”

***********

I could see by the look in his eyes that until it was done, sleep would be impossible. So a few minutes later I was in the kitchen making hot drinks. Years ago a late night session would have had a very different meaning to tonight’s version. 3am and rocking out to Japanese Art.

Basically I sat there looking vacant, occasionally nodding (in a of course I knew that kinda way) and asking Google such questions as ‘what on earth does wabi and sabi mean’. It took an hour before Hawklad had convinced himself that he had done enough. The school panic in his world was over. His completed presentation was significantly more robust than his Dads initial suggestive assignment text

Japanese Art is cool but Godzilla is real cool. Now it’s time for bed….

Hawklad got to bed and immediately fell asleep. I guess at about 4.30am I found some sleep. I woke up a couple of hours later with one overriding thought. How can you write two pages on Japanese Art and not mention Godzilla‘s Atomic Breath just once. What has become of Art.

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New Sport

It’s dark, bit of blue sky, very windy. Good drying weather.

Friday was one of those days. Hassle from school. Missing items. Me being a walking accident magnet. My favourite music magazine, one I’ve been reading for ages, went out of business. And the washing machine….. it decided to eat itself. Two hours of fruitless home repair confirmed that in the words of Monty Python –

E’s kicked the bucket, ‘e’s shuffled off his mortal coil, run down the curtain and joined the bleeding choir invisible!! THIS IS AN EX-WASHING MACHINE…..

A bit of disaster when we have such a heavy lockdown washing requirement. A replacement one was finally sourced that has an expected delivery window of less than 3 months!! So it’s the delights of hand washing for a while. Given Hawklads anxieties – lots of it. I guess it’s a good arm workout.

I need the weather to be nice and cooperate. Outdoor drying would really help. Please help me dry the washing, pretty please….

So here’s the new sport. It’s great for endurance and reactions. Much bending over and sprinting. It’s called ‘catching my pants as they hurtle across the farmers field’. The sizeable wind was clearly trying to turn my underwear into a new post brexit export to Belgium. In fact given the colossal size of my pants they would constitute a bigger new trade deal than anything our clowns of a government have secured in one year…..

Posted on by bereavedandbeingasingleparent · 73 Comments

See what the wind brings.

Sometimes you just have to sit back and see what the wind brings.

Drying clothes outside is proving a bit of a nightmare. Every few minutes the wind brings in another shower. Thankfully the bench cover is just about big enough to quickly chuck over the clothes horse. Given the dirty state of the cover rather defeats the purpose of washing. But needs must.

Sometimes you just have to sit back and see what the wind brings.

Further lockdown measures are set to be announced for northern areas next week. For the last month our part of the north has been an island. Surrounded by areas having significant pandemic outbreaks. Here it’s been reasonably calm. That means that things like shopping and daily life have continued without too much disruption. But is that about to change. Has our area succumbed.

Sons school has had confirmed cases. The local cafe had had to close due to a local outbreak. All public events are being cancelled (that includes Christmas events). Now the local city is reporting a huge growth in cases. 79% rise in 7 days, our rural area has gone up by 60%. Higher than some of the areas already under lockdown. Police are starting to enforce lockdown laws.

It’s the confusion that makes it so much harder for people. One week the PM tells people to grow a backbone and get out. Then suddenly the PM tells us it’s our fault fir getting out. Some places (often government supporting areas) have high infection rates but are excluded from lockdown while other areas with lower rates are forced into lockdown.

Feels like we as an area are about to be forced into a tough, restrictive extended period. All we can do is continue with our own family approach. Try to shield son from as much of the negative, doom loaded news. It’s the last thing he needs to hear. Much better for his (and my well-being) to sit in the back garden and see what the weather brings in.

Posted on by bereavedandbeingasingleparent · 62 Comments

Uncertain

Over the last few days nature has been providing its very own washing service.

Many people are doing more and more washing over the last six months. Especially hand washing. That’s certainly the case here in our little corner of the world. Since about the age of 6 son has had anxieties relating to touching unclean objects. This would result in fairly frequent hand washing exercises. Thankfully only a few seconds of soap and water was sufficient to calm the fears.

That all changed in 2016 when his mum died at a relatively young age. Suddenly the world was filled with uncertainty and unseen dangers. His hand washing rapidly spiralled out of control. It became more frequent and went on for up to a minute at a time. Thankfully he started working with a wonderful nurse counsellor who over a couple of years brought his hand washing back under control. He was taught to wash like a nurse and get it done in under 20 seconds.

Then a pandemic hit. All the reassurances, all the hard earned confidence was blown out of the water. His fears re-emerged worse than ever. Life is now an ‘avoid touching anything and hand washing’ fest. He will wash his hands several times an hour. When he starts washing, he will wash for anywhere up to 5 minutes. All without trying to touch the tap and only using elbows (usually my elbow).

Any delivery or letter has to be taken into the garage for several days of quarantine before it is opened. After I have touched the item then I need to change my clothes completely and be seen to wash my hands. If I venture out then almost full decontamination procedures have to be followed.

Welcome to 2020.

This time it feels different. More engrained. The health professionals agree. All we can do is try to manage the situation until he sees that the pandemic is under control. A vaccine works and he has had it. But even then there are no guarantees. His fears and anxieties may never truly fade. Maybe they will but only until the next killer bug emerges. The future is uncertain. It is uncertain for many.

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Which way

In life you get asked so many questions. But some questions keep repeating themselves. Like the classics ‘Are we there yet?’ and ‘where’s the remote control?’.

Then there are other questions. More vexing questions. One question keeps popping up. I’ve been asked this by family members, other parents, teachers and even once a nurse. It does have a number of variants but it’s basically the same question

Will your son get better?

Will his Aspergers improve?

Will his Aspergers improve as he gets older?

I’m no clinical specialist. Just a bumbling parent. But here’s my take on the question.

Aspergers is a lifelong syndrome. It’s not going to get better. Its not going to be cured. It’s not going to disappear. What might change is that over time the individual and the family may develop strategies to help deal better with some of the situations life will throw at them. Also some of the specific symptoms may fluctuate over time. For example in a number of individuals something like repetitive hand flapping may become less prevalent with age. Also Aspergers often coexists with a number of other conditions – dyspraxia, ADHD, dyslexia…. It is possible that some of these conditions could improve with time. For example our son has with hard work started to overcome some of the issues which his dyspraxia and dyslexia had caused him in his earlier years.

So yes it is possible that improvements may occur. But here’s the thing, it’s not guaranteed. Each individual case is different, unique. Things may stay the same with age. They can also get worse with age.

So we just don’t know.

The Clinical Psychologist who did the full review of our Son was quite clear. The majority of his Aspergers related traits will stay with him over his life. However at around the teenage period changes may start to occur. It could go either way. He could become fully independent or he may regress and may need some form of life long support. She talked through a number of possible scenarios. One scenario was that some improvements would occur potentially in the areas of dyslexia and the diminishing of some of the repetitive behaviours. Another scenario painted a downturn in his existing anxieties and fears. This could occur naturally during his teenage years or could be triggered by a single significant event which effects his view of the world. Tips the balance in his risk assessments of the world. This could lead to significant mental health concerns and potentially social isolation. Where we are sat currently, we are not a million miles away from that scenario. The triggers – the death of his mum, a pandemic, his teenage years…. He is currently physically cut adrift from the world. His fears and anxieties ramped up to the rafters.

Nothing is set in stone. We just have to go with the flow and see what life brings. It could be still be a fully independent life. But it could also entail a lifelong requirement for support. In this country we don’t cater for the latter scenario. Support has to be fought and won for young children. That support is at best is patchy. During the teenage years the support tends to be reduced due to funding cut backs. By early adulthood the support has completely vanished. That’s a sobering thought for parents in this position. It really is.

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Revolution

I was asked about if our son was any closer returning to school. This is his fourth week at home since the school returned full time. Well two things from today really paint the picture.

First an email from school advising that the school had now had its second confirmed case. This time a member of staff. Apparently the confirmed cases so far are not considered to be linked. A small number of individuals have been asked to isolate for 14 days and the school remains fully open.

The second was a conversation with our son. His words need no more elaboration.

“Dad I go into meltdown if the bedroom window is open. In fact I can’t even touch the window handle to close it. I just can’t go back. Can’t go back for some time to come.”

And there is our answer in a nutshell. At present government ministers are telling parents to ensure there kids go to school as it’s perfectly safe and is in fact our civic duty. To not do now apparently makes you a bad parent, someone who is not acting responsibly. Must get those words on a T-shirt.

I will continue to act irresponsibly and avoid doing my civic duty. Our son will return to school when he is ready to do so, when it is safe and when he is comfortable doing that. Until then – Viva La Revolution…..

L

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School, school, school

Captain Chaos is carefully guarding his new great tasting toys.

That Apple Tree needs a serious trim. I had a go today. Managed to fall out of the tree. Bruised shoulder but the fall ended with a fabulous forward role which was perfectly landed. The boy has still got the moves…..

School definitely still has some moves. Sadly not always great ones.

We are in the early stages of a long road trying to manage and help with our son’s serious anxieties. Anxieties about illness, unclean things, viruses and diseases. It’s so easy to tip him further into the realms of excessive hand washing and isolation. Yesterday started off heading a little too close to the rocks. News broke that the small local cafe had to close as two members of staff had tested positive for the pesky pandemic. I’ve managed to keep that from him so far. I can imagine his reaction to the thought that the pandemic was only a couple of miles away.

So while I was managing the news – SCHOOL got to work. Firstly an email was sent to him letting him know that the virus had arrived at the school. Then we got to the Food Technology lesson. All about poisoning, bacteria and viruses associated with food. James was asked to research the main offenders, the symptoms and the associated health risks. So now food has been added to his worry list.

A rather cheesed off email was sent to school…..

And today in Science it was all about diseases. The class being asked to research childhood diseases and viruses. Further they were asked to look at the risk of inherited medical problems.

Thanks that was a big help….

You couldn’t make it up…..

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Vexing

Time passes. It keeps on passing. A wander round this small graveyard provides proof of this. Many of the once proud gravestones are now weathered beyond recognition. Time passes.

Five years ago I had just driven to the crematorium to pick up my partners ashes. They joined my mothers ashes on the sideboard. At that stage a real urge to get on with laying my those two precious spirits to the earth. Definite external pressure for this. I remember listening to one so called expert talk about it being unhealthy for society for people to linger on those who had left us. Maybe that’s the hidden message there – it might be ok for the person grieving but it’s uncomfortable for everyone else. Anyway it seemed like the right thing to do. The only thing to do.

Within weeks I had scattered mum on her family grave. I remember it so well and I have already wrote about a bizarre memory from that experience. I was alone in the graveyard. As I started to clear some earth away, to my side I noticed a little squirrel. A squirrel apparently doing the same thing on a neighbouring grave. Was it a case of burying nuts or was it a burial. It made me smile, two souls getting on with important stuff, maybe the same stuff, almost happy to have company there. Mum would have loved that sight.

Now time to get a move on laying my partner to the ground. Partly in England and partly in Switzerland. A bit of a logistical nightmare. I secured the paperwork to allow for the transport of ashes overseas. Ready to begin.

Five years later…..still waiting to begin.

Now I worry. Have I left it too late. Have I missed the window of opportunity to follow my partners wishes. Being a single parent and with son’s Aspergers, European travel is a nightmare – feeling like it gets more problematic every year. No similar excuse for the English sites. But it just didn’t feel right. Should I really put our son through more grief when he was still so young. No right or wrong answer here. We all need to do what’s best for our close ones and ourselves here. Unfortunately just like most things, just like European travel for us, it seems to get more daunting the longer it goes on.

Have I missed the best time to do it?

That feeling is making feel very anxious at present. Will we ever get round to doing what we have to do? Was life really supposed to be this vexing…..

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Strain

After 36 hours the rain finally stopped. How long before the broadband dries out enough to start working again? My poor mobile and it’s dodgy 4G signal are having to try and take up the strain. It’s struggling.

Strain is a quite a good word for the day.

I was trying to do my Sunday morning yoga. My online yoga expert Adriene is always very calm but even she sounds strained when she keeps freezing due to signal problems. Yoga is definitely not without stress when I keep having to try and reload the app as it’s crashed. It’s also a strain when you try to keep balanced when a dog is trying to lick my face and the big boy cat is trying to use the yoga mat as a scratching toy. Yoga is supposed to be a good fit with life. It does feel that way. Today trying to hold a position which is supposed to be good for me. Actually the longer it goes on it feels less good and more a strain.

Strain….. Trying to be ahead of the curve and get Hawklads Christmas presents sorted early. This year will not allow me the fun of Christmas shopping in the local city so its online only. I worked hard to come up with 6 ideas. Unfortunately 5 of those are already out of stock. Maybe others are further ahead of the curve than I am … Shopping strain.

Strain…..Not being able to find my bank card to pay for the one Christmas item… Bank card strain.

Strain….. Finally finding the bank card but then nit being able to find my glasses to read card numbers… Eye Strain.

Strain….. That’s now three weeks without any feedback on work Hawklad has submitted. Is it even been looked at?

“Dad what we should do is for one subject not submit any work, rather we should send them a few screenshots of FIFA20. See what happens!!!!”

I’m so tempted to let him go ahead with his experiment. Maybe this week. It’s frustrating as it does look like it’s school at home for at least the next 3 months. Clearly unless the school is forced to shut and go full online tuition then things aren’t going to improve. This is it. It’s something but far from perfect. Will keep pushing school but I have a sinking feeling…. School strain.

Strain….. Trying to clean the kitchen and bathroom floors……. Knee strain.

Strain….. Trying to wash the house windows…….. Elbow strain.

Finally the thought of trying to get these words uploaded via the mobile. Not being able to easily read the posts I want to read. WP strain.

So yes definitely Sunday Strains.

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Next stop

Ever got the urge to keep opening those gates. To just keep walking in one direction. To see what you find. No boundaries. No limits. To be free.

One day I will walk to the next stop.

Now if I packed enough egg sandwiches and tins of Pepsi!! then I will eventually arrive at the city of a Hull on the North East Coast. If I have been very organised and packed my floatation rings then it’s next stop Amsterdam.

What’s the next stop on the school at home journey?

I think Hawklad is now starting to realise that a return to school this month is out of the question. His fears and anxieties are not going to be overcome within weeks. So now he is starting to look at January as the next window of opportunity. So it’s looking like another 3 months of school at home (at least). We will continue to try to stick with the school teaching schedule. Cover the subjects they teach. Use whatever teaching materials they make available. If they don’t then we won’t lose any sleep over it. That’s more time for him to try and relax. To try and enjoy life. It’s often easily forgotten that too many are losing out on huge parts of their precious childhood. It’s not all about formal schooling and meeting government targets.

So be it. We have got this.

It’s completely his call. He decides what the next stop is.