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2022

“Dad that’s not a bad sky at all”

It’s a grand one Son.

“You always say GRAND these days”

It’s just a way of saying something is impressive. It’s a bit like you saying something is sick….

“Dad I was thinking about school. What happens if I still can’t go out during next year as well. Maybe I’m not ready to go back until 2022. What happens then?”

Well we just carry on. We’ve coped for most of this year. We just do the same next year then. Although I might have a ZZ Top beard by 2022 .

“I so want to see that.”

Make a change for you. Having a Dad who looks cool….

“That’s never happening. As you would say Dad. You are a Grand Muppet.”

You never know. One day….

“Dad is that your mobile Dad going off.”

Yes it is. A message. Oh look they have rescheduled our Ozzy concert. Was supposed to be next week but they have put it back to October 2022. Time for me to grow a proper beard.

“Dad time for me to maybe venture out again…”

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Just like a Desert Island

I’m sat here watching the rain falling while listening to Pink Floyd. Nothing like a bit of Floyd to life the mood!!!! My mum would always say that she would listen to sad music to cheer herself up. Maybe it’s in my DNA as I’ve always tended to listen to more darker themed music. Maybe I should try happier ones. Where’s that Alvin and the Chipmunks cd …. that’s why I stick to the darker stuff.

So it’s time to get back to that Desert Island again.

Hawklad is still working on his list so it’s the extra post then. But I hear you cry – there are only two of you. Well here goes.

I was thinking about living on a desert island. The beach, the palm trees, surrounded by seemingly never ending water. That feeling of isolation and being alone. Cut adrift from the world. But actually isn’t that us now. Are we not already on our very own desert island.

Look at the photograph above. Replace the beach with our wet lawn. Palm trees morphed into an apple tree. The shoreline is now a garden fence. The farmer land, nettles and wild ground suddenly our very own version of an ocean. A barrier between our little island and the outside world. Days go by without seeing another human. Definite feelings of isolation and being cut adrift from the outside world. No sign of rescue ships on the horizon. Has the world stopped looking. Did it ever really look. Does it even know that we are here.

It’s such an odd feeling. But here’s the thing. Do I see this as necessarily a bad thing. Hawklad definitely doesn’t. Currently the remoter the better for him. He’s ok as long as he can watch a bit of live football and Disney Plus. But what do I think?

Do I see the dividing ocean as a threat or a godsend. The longer our lockdown goes on then the less I feel physically connected to the outside world. It becomes increasingly hard to see myself fully reintegrating back into the world beyond our island. Actually maybe isolation is what I need and want. Something not to be feared but embraced. Maybe the real fear is that a rescue ship does arrive…….

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Childhood

So many pupils from our son’s year group are isolating. I’m also hearing that other pupils are being asked to isolate in other year groups as well. Many teachers are off. It’s all a bit of a mess really. Many schools are like this in the UK. They don’t feel like environments conducive to learning at present.

These are stressful times for many. I’m not sure the Government understands this. Or chooses to ignore this. Bland statements that ‘schools are the best place for children’ are recited everyday. It might be in terms of the Economy but….

Some children need to be in school. Some need to be at home. They definitely need to have the chance to have a childhood. A good childhood. It’s often too easily forgotten how much stress and anxiety they are under. Unable to see friends. Unable to do some of the stuff they love. Living in a stress filled world with so much confusion. Told to wear masks in buses and shops, yet told not wear them in classrooms. Frequent enforced teacher switches. Many sadly forced to isolate or deal with the actual virus. Living in a small world with few holidays and adventures. Watching never ending grim news reports. How much stress are many of our children under. We have to do something about this. To me that’s more important than the short term needs of the economy.

Our son is racked with anxiety. Too much to allow him to venture through the front gate. A significant part of his precious childhood is being spent in isolation. That’s hard to take as a parent. All I can do is to keep him feeling safe, try to shutout the bad stuff from the world and to try to find ways to help him still enjoy his childhood. He’s had a tough one already. Loss of his mum, coming to terms with Aspergers and now a Pandemic. That’s why I’ve got to work all the more harder. There’s still a childhood to be enjoyed.

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Ghosts

I was listening to the new David Gilmour song and one line really hit me.

Yes, I have ghosts, not all of them dead.

For me that is so true….. Often the ones which are not dead are the hardest ones to deal with. They can appear at any time. They fill my head with negative thoughts. Once there they can haunt me for days. Missed opportunities. Past mistakes. Errors. Broken promises. Heartaches. Dead ends. Let downs. Sad memories. Inhibitions. Self inflicted hurt. Bleak times. They can hold me back, stop progress, bring on self doubt and herald the return of depression.

Those thoughts still live within me. They aren’t dead. Ready to reappear when I drop my guard. When I am low. When I am tired. When I’m facing a leap of faith. They all relate to past events but the memory still lives on within me. They try to shape my present day mood and choices.

Maybe it’s time to deal with them. Exorcise them. End the hold they have over me. Life is too short to waste. Its time to fill my soul with positive thoughts and memories. Ghosts should be dead.

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Kind

It’s autumn and the leaves are falling. Here when they fall they undertake a kind of heroic mass migration. They migrate to our front lawn. Has to be our lawn, never any of my neighbours. These fallen ones have just started their journey heading inevitably to just below our front window. Then they like to stay put. That’s so very kind of them.

I’ve been trying to be kind to myself as well. If I’m happy then I will be a better parent. Trying to find enjoyable things to do. Maybe discover some new hobbies. One of which is learning to play the piano. Finally making use of an electronic keyboard which has been basically just gathering dust. The piano tuition app I’m using is good. Quickly I can now start to read music. I can play a rustic version of Ode To Joy. But I couldn’t understand why the piano app kept talking about one key being middle C when with my careful marking out of the keys came up with a different answer. Then the penny dropped. Can you spot the deliberate mistake in the pink scrawls……

What a muppet. Ok the app might be right…..

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Golden times

Unlikely to get too many trips out to enjoy the wonderful autumnal colours this year. But at least I will spend more time looking at very our own mini displays. Too often these are not fully appreciated.

It is often the little things in life that we miss. Don’t fully appreciate. Take them for granted.

Before 2016 at this time of year we would drive as a family through the tree lined country roads to the local arboretum. A walk round the thousands of autumnal trees ending with a hot chocolate at the cafe. It’s not until these moments are gone that you realise how golden those times were.

After 2016 I would drive son to very the same arboretum. Trying to control a mad dog while son kicked around in the fallen leaves. Ending in the cafe now so he and the dog can enjoy a bacon butty. I would saviour a freshly ground full on caffeine burst. Golden days not possible this year.

So maybe those annoying fallen leaves in the front garden will actually come in useful. Let’s go and have a thrash about in them. Followed by a home made butty and yes a hot chocolate. Yes different times, but still golden times.

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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.

Posted on by bereavedandbeingasingleparent · 70 Comments

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