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.

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…..

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.

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.

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.

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.

Insignificant

It’s a big sky. Its easy to feel very small and insignificant stood under it.

There are so many times when parenting is the best gig on the planet. Then there are other times…

I was trying to convince our son that he had washed his hands enough. He had been at the soap and water for nearly five minutes. Everything I said didn’t seem to have any impact. Finally he decided that was enough. He asked if the towel was clean and had it been washed that day. I assured him that was the case. He left the bathroom and I looked at his hands. His very red and sore skin. That’s what happens when you wash as often as he does. We are using skin friendly soap. I water it down further. But his hands are still red. I encourage him to use his skin care lotion. But his hands are still sore.

These are the times I feel inadequate as a parent. Missing the support of another person. Someone to share the load. Definitely running out of things to try. Actually ran out of things to try. His health professionals try to help but they see this intrinsically linked to the pandemic. Get the pandemic under control and we can start to bring his hand washing under control – hopefully. But that doesn’t make me feel any better as a parent. Feels like I had one job and I dropped the ball on it.

So I’m stood under that big sky. Feeling insignificant. Time to breathe. Reset and go again. Yes significant but definitely not beaten yet.

Working hard on harvesting

Apparently we are enjoying the last few days of summer weather. It’s kinda sunny and kinda warm – if you ignore the cold wind. The forecasters are warning that soon the weather will be most definitely very different. Very cold, wet, grim and grey. As a result the farmers around here are desperately trying to get on with stuff. Even working when it’s dark.

It’s also time to start harvesting our own little garden crop. Today it’s a few apples, onions, carrots, tomatoes and potatoes. Some have done better than others……

Can anyone speak carrot. What’s the carrot for ‘you do know this is Yorkshire and you are about to be given a right weather spanking. You don’t have months of sunny growing weather left, you have no more than 3 days. So get a move on….’

Why is it so simple to grow weeds yet those so called easy grow carrots prove so pesky. It’s as if the carrots pop out of the seeds, feel the Yorkshire soil and go ‘YOU HAVE GOT TO BE JOKING’.

So if the carrots play ball then we are moving into a spell of living off stews, soups and apple crumble. I can happily live with that. I’m always thankful for whatever the garden yields. It does have to contend with the muppet gardener and Captain Chaos.

So yes it’s that time of year. The weather starts to break OR in our case, break even more. It starts to get colder and darker. For many it can be a tough change. Heralding a long period of what feels like ever increasing claustrophobic imprisonment. Me included. That’s where friendships, happy things and dreams are so important. They can help soften the sadness, even lift us into a better place. So for me it’s time to increasingly focus on those things. I can’t do anything about the weather but I can do influence the truly important stuff. Soon the autumn colours will become spectacular. The important stuff can lift the soul. Yes the following months can be bleak BUT they can also yield so much beauty and wonderful moments as well

Now it’s time to give those carrots a good talking to.

Running to or from it

A view from one of my old running haunts. A wonderful place. Basically had the tracks to myself. Me, some farm land and nature. I enjoyed the peace.

Isn’t that strange. Looking back I really valued my space. Having some solitude. Yet fast forward to September 2020 and I fear the solitude and isolation becoming a prison. Surrounded by cold, grey walls.

Just can’t make my mind up can I.

But it is a genuine fear of mine. Becoming completely isolated. Cut adrift.

At present I am ok. I’m finding a way through the ever present danger of isolation. I still have dreams of a different life. There are people who care. We can find ways to stay in touch. I have a workable life balance at present. Not great but not too bad. The risk is that I know myself. I know how easily I can lose confidence. How my social skills can desert me. How I can start to overthink. Become too inward looking. That’s the danger zone for me. Then I can easily be sucked into a completely isolated lifestyle. A lifestyle which is not sustainable or healthy for me.

The other worry is that in the modern world it is so easy to be cut adrift. So easy for people to stop calling round. To stop noticing you. Just one unknown face in the crowd. It felt like that for a long time after I lost my partner. People stopped calling. I was just that unseen face in the crowd.

So for me it’s finding a balance. Enjoying more solitude but avoiding complete isolation. I guess it’s like climbing in thick hill fog. You might be relatively close to others, but they can’t see you. You might as well be alone. The solo climbing can be enjoyable but it can also be unnerving. You are never quite sure how close you are to the precipice. How close to falling over the edges do when your alone, no one will be there to stop you.

But the hope is that if it’s like the climbing metaphor. I’ve been caught out in those white out adventures many times. Yes they have been challenging, a little scary at times. But I’ve so far avoided falling off the edge. That represents hope.

The third sequel

The third sequel already. The Trilogy done in one day. Eat your heart out Peter Jackson.

So this is the third instalment in the ‘what has changed over the 6 months of pandemic isolation’ saga. This time it’s what has changed for me. I guess this one is called The Return of the Kermit the Frog King. So what has changed then for me.

  • With Hawklads increasingly pronounced Social and Health related anxieties the last six months have seen a ramping up of the parenting pressures. Fewer breaks, more challenges and yes less support. In the UK small amount of support that has survived the Conservative Funding Cutbacks largely stops when kids hit the teenage years.
  • Have become a home educator. A school facilitator. A Classroom Supplies specialist. Much smirking…. After 6 months I’m still winging it.
  • I’m sleeping less. Much less. Just can’t seem to reset the insomnia cycle.
  • Certainly more isolated in terms of actually meeting people outside our little bubble. In 6 months I’ve seen family members twice, one work colleague (and good friend) maybe three times, neighbours a handful of times, the local shop workers maybe a couple of times a month, the dentist once, one visit from the boilerman, a few health workers and doctors. That’s about it. Oh actually forgot one person. The Postman, the only person I see regularly. I count his fairly frequent waves as my most regular physical contact. Luckily I have lovely online friends.
  • With not meeting too many people I’ve started noticing human life more. I notice dog walkers in the fields, cyclists, passing cars, voices from the street, even planes in the sky. A reminder that a bigger world still exists out there.
  • My conversation skills have never come easy to me. I have to work on and practice them. That’s just not happened for months. Even on most phone calls I can feel myself becoming increasingly wooden.
  • My largely unseen dress sense is becoming increasingly avant-garde.
  • I have lost 6lbs but you wouldn’t notice it. Having to resort to consuming far too much Soya (Soy) which isn’t great for my tummy. No I’m not pregnant.
  • I’ve stopped running and walking and road cycling. Must admit it’s not doing my old contact sport injuries any good. Bits are starting to seize up. So I’m trying to find my inner Yoga. Or as I call it Controlled Falling Over.
  • Work has dried up. This was supposed to be a really busy year. Lots of new jobs and major events. In practice that all was cancelled. Remains cancelled. Some plans have been put in place but really I’m not going to get much work until 2021.
  • I’m more able to fill my day without leaving our little household world. No need to visit shops daily, coffee shops, cinema, visit family or friends. I’m not saying it’s a good thing, but it comes easier to me now.
  • I do tend to overthink things now. Can have days when I do sober too much time internalising stuff. With me that’s not necessarily a good thing. It’s such a short stroll to self doubt and negativity.

Yes things have changed for me. They will continue to change as our personal lockdown is not going to end anytime soon. Potentially months more, maybe much longer. With us being an Aspergers Family that was kind of in place before the pandemic. Maybe many of these changes were already happening before the March lockdown. They have just become more pronounced. Maybe these are longer term changes. Maybe it’s much more than a three episode trilogy. Maybe it’s a permanent feature.