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Life snapshot

The Aspergers life can be racked with anxieties and obsessive behaviours. Additionally Aspergers can frequently coexist with OCD. Add the death of a mum and both grannies. Then on top of that you add a pandemic. Something has to give with that kind of pressure building up. That’s what our son is dealing with and it is so very tough for him. What does that mean in practice. Well here is a snapshot of life and the impact it has on him.

Every ache, every sneeze, every spot, every pain is seen as a potential sign of a serious disease or the C word. Anxieties bring on indigestion and constipation. These are then seen by him as more potential warnings of serious, life threatening health conditions. The natural response was to frequently wash his hands. It was both to cleanse his hands but also an attempt to pour water on the raging anxiety wildfire. Washing to the point of red raw skin. These issues have existed for years but slowly during 2019 slow progress started to happen. The hand washing was just about brought under control. Then the pandemic hit. The progress was instantly lost. Suddenly the months of reassuring talk a out avoiding serious illnesses, the bodies capacity to fight back and the advances in medical science are basically blown out of the water. The problems started to mount up again and escalate to new heights.

  • Hand washing every few minutes. From 15 second washing now to washing for minutes at a time.
  • A reluctance to dry washed hands as towels might be a source of germs.
  • Harmful germs are seen to exist everywhere. Suddenly it’s difficult for him to touch taps, toilet handles and door knobs. Sheets of paper have to be left next to these so he can avoid touching them directly. Even pulling on a shirt may result in the potentially unclean sleeves coming into contact with his hands. Shoes have to be put on without using his hands.
  • iPads and joysticks have to be washed frequently and definitely before he touches them. It’s the same for things like pens.
  • When he strokes his pets he will immediately run to wash his hands.
  • He needs to see evidence that I wash my hands before I touch any of his items.
  • Clothes have to be frequently washed often multiple times a day.
  • Outside he is constantly looking out for flies and flying bugs. If they come too close then he will need to go inside to wash.
  • He has to have his own seat and no one is allowed to touch it. If they do then the seat has to be cleaned.
  • When he goes out the the front door then he consciously tries to avoid walking over any areas that the postman or others might have walked across. When he comes back in them his shoes will need to be completely cleaned. If he ventures through the front gate and into the outside world then on his return he will completely strip, shower and change to new clothes. Those rules apply to me as well.
  • Mouth-washing and gargling is frequently repeated during the day.
  • Any item which hits the ground (inside or out) will need to be deep cleaned.
  • Any new food items have to go into the garage and complete a quarantine period if at least three days.

This is daily life in our little home. I do my best to reassure, reason and modify behaviours. But it feels nothing more than trying to plug a leaking dam at present. One hole maybe plugged but in the meantime another two new holes have appeared. Counselling was there but government cutbacks have taken their toll on services. The pandemic has temporarily suspended specialist help. The result is massive backlogs and no access to help. These are tough times. For him and yes me as well. As a parent you feel helpless, definitely so underprepared for these challenges. But we keep going. We pick ourselves up and go again. Yes we will get there. We will. But it will take time. Realistically maybe well into 2021. In practice timescales don’t matter, we take each day as it comes, fortified by the love of friends.

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Bit battered

Poor thing has been a bit battered in the recent bad weather. Well I still think it deserves a moment to shine.

I was having a chat with our son last night about how life has changed recently. It’s only really now that some of the implications are starting to feed through. I will only focus on one small part of the conversation as this post could have ended up as long as the extended Directors Cut version of War and Peace.

Son struggles with social settings. It’s a well established element of Aspergers. He will actively pull away from crowds and groups. One of the only exceptions to that has been Rock Concerts. He still feels uncomfortable there but for a variety of reasons he can cope. He can put his hood over his head and no one will notice. He likes the fact that rock crowds seem very welcoming of any person, any look, any characteristic. With the noise no one is likely to talk to him. When the lights go out, no one can see him. You are just one hidden person in a sea of people. Plus he really loves the music.

So far he has seen Iron Maiden, Hollywood Vampires (with Johnny Depp), Alice Cooper, Kiss, Lynyrd Skynyrd, Thunder, Shinedown, Status Quo, The Darkness, The Damned, The Stranglers and Status Quo. He’s also seen his favourite band – Alter Bridge.

Before the pandemic kicked in he was hoping to see more. The likes of Whitesnake, Foreigner, Europe, Ozzy, Aerosmith and The Who. But the pandemic changed the world. Most of these have been postponed or cancelled.

When concerts restart what will they look like. Will the days of standing shoulder to shoulder return. Will people have to wear masks. What number of fans will be allowed in. How close will you be able to get to the band. Will you need to be vaccinated before you attend. Will certain fans be excluded (age, health factors). Will all the fans want to return. Will it just be open air concerts. Will it be the new idea of drive in concerts. Will some bands just give up. Who knows.

The pandemic also changed son’s life. It has sent his social and health fears into overdrive. Changed the balance and how he sees the world. Things which were acceptable have been tipped into the no go area. Those changes might be temporary or they could be permanent. Only time will tell. But certainly his concert days are at best on long term hold. That’s the thing about Aspergers, changes in external factors can have a huge internal impact. Lasting impacts.

Regardless of any more virus related developments, I just can’t see son wanting to go to a concert this year, probably next as well. Maybe that fragile corridor that allowed him to venture into a concert crowd has been broken on a much more permanent basis. We just have to wait and see. Maybe going forward our own music festivals are the way forward. Buy a concert dvd and hold the event in our living room or garden. We can still put the T-shirts on, have the snacks, drinks and a burger. We can even turn the lights out and crank up the speakers. Best thing – no masks required. No queues for toilets as well….

That doesn’t help the concert industry. I just hope they and the bands find a way through this mess.

So maybe that’s no concerts for Dad as well for sometime. But it is what it is. I’ve been so lucky to see so much music over the years. So as I move into a barren concert period let’s pause and see what my memory is like. Lets see how many of the artists I have seen over the years, I can actually remember. The good, the bad and the ugly. I’ve set myself 10 minutes (so I might miss a few). Here goes….

Whitesnake x4, Motörhead, Deep Purple x3, Black Sabbath, Ozzy, Dio, Rory Gallagher, Tin Machine (David Bowie), Scorpions, UFO, Meatloaf x3, Blackfoot, Mountain, Alaska, Saxon, Magnum, The Firm, Eric Clapton, Tom Jones, Ronan Keating (x2) my partner to blame for that…. Blue Oyster Cult, Alice Cooper x3, Gary Moore, Deacon Blue, The Kinks, Kirsty MacColl, Pink Floyd, Nils Lofgren, Killswitch Engage, Birdland, Bernie Torme, Roy Harper, Suzy Quatro, Paul Rodgers, Chris Rea, Marillion, Runrig, Asia, Al Stewart, Neil Young, Peter Gabriel, Tracy Chapman, Terence Trent D’arby, Simple Minds, Lou Reed, Bonnie Riatt, Chrissie Hynde, Jackson Brown, Little Steven, Bryan Adams, Squeeze, Tina Turner, Extreme, Was Not Was, Lyle Lovett, plus those with son.

Ten minutes up….

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Needs work

Another moody Yorkshire summer afternoon. Everyday it’s such a blessing to wake to this view. No wonder my partner fell in love with this house within seconds. And as ever she was on the right side of the conversation. The ‘needs work’ line was a little weak. Actually it still needs work but that view is still here. Tell me what’s more important.

Looking back my line about ‘needs work’ was more about avoiding change. Sticking with what we had. Avoiding that leap of faith. That’s been a theme of my life story so far. I always think my past climbing hobby is a perfect reflection of life. Many goals set but never attempted. It was easier to avoid them, find excuses. Too much caution climbing routes. Using fear and self doubt as an excuse to avoid those more challenging climbs. Backing away from leaps of faith. Yes I had fun but what could have been.

Now the life safety net has been removed. Single parenting and being without that person who held my hand on those big steps. Life has changed but so am I. It’s a slow process but it’s happening. Now is the time to face some of those fears which have held me back. Time to start ditching those constraints that have grounded me. Time to re-evaluate myself. Only by doing that can I be that parent our son truly deserves. Yes the one who protects him but the one who also encourages him to truly flourish. To be that person who he truly wants to be. To live his life.

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Finding Popcorn

The very observant amongst you will notice a plant pot which looks remarkably like a drum from a tumble drier. Best and safest use for those which had a habit of catching fire. Ours did get modified to make it less likely to explode (after many months of waiting) then promptly died one day after the new warranty period ran out. So better get some use out of it. So we acquired a large metal plant pot.

Some things are more challenging to find and acquire.

Things like Popcorn. It’s a staple part of our Saturday Night Home Movie Experience. Well it has been until now. At the moment it is like gold dust at the supermarket which is our only real pandemic option. For two weeks it’s been sold out. Maybe it’s become the new currency of the survivalists. Replacing bathroom paper (toilet paper). As a result I suddenly have a real urge to go popcorn hunting. Must be able to find some popcorn somewhere. Must have a rummage.

Another challenge which is far less enticing and attractive is the prospect of trying to get our son to venture past the front gate. So far the tentative attempts have failed. Even just venturing onto the road, just a few paces from the front gate is proving a challenge for him. This won’t be just isolated to this family. So many others will be in a similar position. Trying to deal with these issues largely without any help. Our leader of the opposition party has been pushing the need to address the mental health consequences of the last few months. Sadly our government doesn’t seem to get it. The response seems to be well we have released the lockdown, just go out and act normally. Unfortunately that response is typical of the last 10 years. Mental Health funding has been one of the easy targets for government cutbacks. This has led to untenable waiting lists for some essential children services and worse. Many parts of children and adult support have just disappeared. You can just see the likes of Johnson and Hancock smirking while telling us

If you have the money then you can buy help, if you can’t then tough. It’s your fault for not having massive bank accounts. Let’s think of the real issue. How can we get our hands on the profits from a switch to a US type health care system.

So we will keep trying to take those little steps. Trying to raise awareness of this issue. This is going to be a long and very winding road. Importantly it’s a road which will be driven by our son. He will decide when and where to take those steps. He has to find his own way and be comfortable with it. Today he won’t be going down that road. That’s for another day.

So I will go back to dreaming about popcorn hunting.

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Safety

Today’s out of focus wildlife action shot is of someone who lives in our roof. Actually taken yesterday when the sun was shining. Our housemate is about the only member of our household who gets out these days.

This is the seventh week of Son’s own version of the lockdown. A few dog walks in the early weeks but then going through the garden gate became increasingly difficult for him. Even in the security of our car, a simple trip out onto the road becomes an anxiety crisis. When he returns he immediately washes his hands for minutes then has to have a shower and bath. These are genuine fears. Fears that effect his life. The excessive need to wash is not new. He has been shown how to clean his hands like a nurse. He has hand washing drills that set time limits. But sometimes it’s best to let these lapse as the excessive cleaning is often more about ridding his soul of anxieties rather than purely removing germs from his skin. Especially when a virus surrounds him which has so many unknowns.

He won’t be alone in these fears and feelings.

A chap in London with a little NHS badge announcing that the lockdown is being eased or lifted is not the end of the matter. It’s not as if it’s a water tap which we can instantly turn on and off. That’s also assuming that the virus remains under control and doesn’t spike again. Under Control is a rather worrying definition these days. It appears to mean keeping daily infections running into thousands and deaths below 300 a day. That’s just hospital based deaths not including the huge numbers occurring in care homes or in the wider community. For many the easing of restrictions is just the start of a long and painful slog. No sudden street parties for them. It’s about trying to repair bridges between the safety of their homes and the wider world. Picking up sufficient confidence to walk past that front gate. To meet people again. That’s going to be so tough with no guarantee of success.

So for the foreseeable future, our little starling will be the only one venturing out.

Posted on by bereavedandbeingasingleparent · 118 Comments

The science

Apparently I have to walk or run 50km next week so this chap evolves. Dads do have their uses when it comes to Pokémon Go. That’s probably as far as my usefulness goes. But at least I do recognise my limitations. Sadly sone people have boundless ambition and see no limit to their abilities. That is terrifying.

We foolishly watched the news.

“Dad can I ask a silly question. Shouldn’t the science panel advising the Government be made up of scientists.”

Yes you would hope that a panel of scientists is in fact a group of science experts. For months the UK Government has kept going on about how it’s policy on the virus is determined by this secretive science elite. As they are scientists (and clearly they know more than we do) then we should trust Government policy. Ok that sounds like a plan.

“He’s not a scientist. He’s that awful man who tells the PM what to do. How come he is on the science panel.”

After months of having to sign up to a science led approach we suddenly find out that the secretive science panel is compromised of some scientists but has key members who are political appointees. Cummings, the key PM adviser is a lead member. This is a man who believes in Eugenics – that is selective breeding and human intervention to improve the human gene pool. This is also a man who apparently thought that high levels of virus deaths was ok as most would be elderly. He’s not alone on the science panel. He has buddies. He is joined by a data specialist who came up with the Government’s online election campaign. He also has some very worrying views on the uses of private data. These two characters drive the science panel while some scientists on the panel can attend but are not allowed to ask questions. These have to be submitted in writing prior to meetings so they can be filtered. Suddenly it’s so much harder to have faith in our science led approach.

But what do I know. I’m only good for evolving pokemon.

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Facts

Last night was one of those yucky sleepless nights. So very tired yet all I could muster was probably 40 minutes sleep. Annoyingly those 40 minutes came right at the end of the night and was brought to an all to abrupt ending with the morning homeschooling alarm.

During those zombie like hours I started writing a list of things to do this week. After getting stuck on item 1 for far too long, the list morphed into a more fruitful

What have I learned about myself during the last few weeks of this rather odd period in our history.

So here goes with my early morning facts

  1. I’m crap at writing To Do lists,
  2. Late at night I have a habit or writing LIST so that it looks like LUST,
  3. I can’t sleep properly,
  4. My old mobile phone has never worked better since it got machine washed with my clothes,
  5. My phone has a surprisingly good camera however it has the most annoying panorama function. The photo above took hours to do,
  6. I am so lucky to have that view from the garden. But what would I give for either a mountain or the sea in the distance,
  7. I quite enjoy most of this home schooling lark,
  8. Homeschooling and work are never going to be a good fit for me,
  9. Homeschooling and long distance running are never going to be a good fit for me,
  10. Homeschooling and my bank balance are never going to be a good fit for me,
  11. Homeschooling, my bank balance and holidays are never going to be a good for me,
  12. High petrol prices are not an issue when you don’t drive your car for 6 weeks,
  13. I can now make my own pizza bases as long as they are square shaped. Round is beyond me,
  14. I can fill a freezer up real quick when I start saving leftover food,
  15. A dairy and gluten free diet is a pain in the arse when the shops sell out of specialist diet ranges,
  16. I miss football on the telly,
  17. I miss alpine sports on the telly,
  18. I hate the news now. I miss the days of moaning about Brexit,
  19. I’m a barnpot yet I would do a better job of running our country than the clowns currently in charge. Apparently it’s ok for a Prime Minister to miss FIVE emergency meetings and have weekends off during a national emergency,
  20. My Son knows more than I do,
  21. Receiving a parcel from Amazon now feels as dangerous as trying to change a fuel rod in a nuclear reactor,
  22. Not being able to get Sons favourite Soup, Beans, Skinless Sausages and Pasta is one of the most stressful things in the world,
  23. I must be really vexing to live with,
  24. Cheap tea bags taste the same regardless of how many times I reuse them,
  25. Using Yorkshire Slang Words gets me put on the Spam Naughty List,
  26. At some stage I might have to physically talk to someone else than our son. I’m dreading that thought,
  27. You can still get colds if you are isolating from the outside world,
  28. When I’m carefully stood in my designated 2m queuing area why can’t I stop thinking about how long virus particles stay airborne for,
  29. I get so excited when I see an aeroplane now that I must rush to check where it’s flying to,
  30. I haven’t combed my hair in 6 weeks,
  31. Where does all the so called spare time disappear when I’m on lockdown,
  32. The more I learn German the less I can remember of French. It’s as if for every new German word entering my brain, a French one has to pop out to make space,
  33. I will even talk to slugs these days,
  34. Don’t set up a darts challenge with your son then at the last minute realise you don’t have a dartboard or darts,
  35. The Government and Chief Executives of major companies only email me when there is a pandemic going on,
  36. I still hate U2,
  37. I want to live in Switzerland
  38. I’m still a widow. Or as my Predictive Text tries to type – I am still a window,
  39. These days it really doesn’t matter if I put my pants on back to front.
Posted on by bereavedandbeingasingleparent · 108 Comments

Ever shrinking world

A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

Posted on by bereavedandbeingasingleparent · 118 Comments

Return or not

WARNING: This is a covid related post… it may contain grotesque examples of confusion.

This friendly bird is a frequent visitor who keeps returning for a daily meal. A visitor who doesn’t bother with social distancing rules but is far too fast for my poor mobile to get a truly in focus picture. On the subject of RETURNING.

The school return question is starting to be vexing again. When the schools closed down a few weeks back the advice was that they would be closed indefinitely. Exams in June and July cancelled. They would certainly remain closed until the virus was under control and the country had implemented systems to keep track infection rates. A return was not going to happen until it was safe to do so.

Let’s set the context in the UK.

  • Each day a 1000 people are dying in hospitals as a result of the virus and the numbers are continue to rise. The UK is likely to have the highest mortality rate in Europe,
  • That horrendous number does not include the many deaths occurring in care homes and in household settings. Up to half of all deaths could be occurring in care homes,
  • Medical staff, care workers, teachers, bus drivers, people who have attempted to self isolate are continuing to die,
  • 5 under the age of 20 have died,
  • Each day something like 40 people die from this virus who have no underlying health issues,
  • The official ‘those at most risk’ list has clearly missed off many thousands of vulnerable patients,
  • Currently the UK can only perform 18000 virus tests per day. That’s not even enough to cover the urgent requirements of our front line staff,
  • Unless your the daughter of a government cabinet minister you are unlikely to be tested if you are self isolating at home,
  • We are still to introduce a virus contact service or app,
  • Even based on the country’s inadequate testing regime we officially have 84000 cases recorded.

That doesn’t strike me as under control.

This week the governments’s appointed scientists and will meet with the Cabinet to consider the lockdown arrangements. The government are keen to reopen the economy as a matter of urgency and revert back to the original herd immunity strategy. Even though growing evidence is developing that people can be become infected more than once. How long any acquired immunity lasts is still uncertain. As part of demonstrating that we are getting back to normal many in the government want schools to reopen ASAP. Certainly well before the ban on mass gatherings are eased. The argument is that kids are at a lower risk of serious complications.

Ok I fully understand the need to start living again. I hope it’s done as quickly as it is safe to do. If decisions are truly based on the best and broadest scientific advice then I think many of us will support that. But then I put my parent’s hat on.

Parents potentially are going to face a decision in the coming weeks. A decision where there is no right or wrong answer. If schools opens early, do I send our kids in. That is a personal decision and not one that I will allow the Government to take for me. Personally this revolves around a number of factors

  • Kids may be at a lower risk of serious complications but that it not NO RISK. Already 5 under the age of 20 have horrifically died,
  • UK schools are not designed for adequate social distancing or effective hygiene. Too many kids, teachers and support staff are crammed into out of date, inadequate facilities,
  • Homeschooling v Schooling – not planning to go there today,
  • The anxiety and stress the return may place on our kids. Some kids may be busting to meet up with friends again and start being a school kid again. But equally many will find the return stressful. With our Son’s Aspergers he struggles with many social and health anxieties. He has a huge issue with the fear of hygiene, illness and death. Co-vid has sent that off the chart. To the extent he struggles to leave the confines of our front gate these days. If we do venture out then it’s a quick walk, keeping at least a field distance between others and not touching any surface. That’s walking a dog in a quiet village, what on earth will it be like when we are talking about a confined building with a 1000 people. The medical support we might be able to tap into to help with this has been cut back by the government. The service is stretched and is currently not able to do face to face counselling until later in the year – currently it’s not deemed safe to do so.

So it’s a personal decision. No right or wrong decision. We all are just trying our best to navigate this mess. For me (with my parent hat on) I can’t see any foreseeable set of circumstances where I would be willing to send him back into school this side of September. But it’s a personal decision. It’s his decision. So when the times comes that the school is open then it’s his call completely. It’s his risk, his stress, his life.

Stay safe people.

Posted on by bereavedandbeingasingleparent · 99 Comments

Fear

Sometimes the path leads to the light. The direction is clear. Other times the path takes you unerringly into darkness and uncertainty. Into fear.

Over the last few days my spirit and my mojo has dropped alarmingly. Today life is a struggle. I’m tired. I’m making too many mistakes. The smile is a little too forced. Confidence is a rare commodity. I feel old and worn out. The direction seems uncertain. Even the written word seems increasingly wooden. A few paths maybe have run their course. Maybe too many paths are now just covering old ground. Life focuses on don’ts rather than do’s. Where abstinence from the likes of caffeine moves from health enabling to puritanical punishment. Life doesn’t flow it requires back breaking effort.

It’s times like this that LOSS hits home the hardest. You realise what has been lost. That reassuring presence is just not there. The rooms seem empty and echo with sad thoughts. Isolation is all consuming. My bones feel fear. Yes fear.

“No one ever told me that grief felt so like fear” – C.S.Lewis

The track in the photograph – eventually it bends to the left and takes you out of the eerie dark. On the other side of the hill the track opens out and runs through a beautiful little moor. Just need to have the courage to keep on going.

So tonight let’s just get through what’s left of this lifeless day. Then in the morning – reset and go again. Find that path. Maybe it’s a new path with old ones closed down. Have the courage to continue down it.