Questions

A hospital visit is now an even more unpleasant experience. Masks at all times except when you were in a separate room with no other people. One temperature check. All staff with masks and gloves on at all times. The place filled with clearly very panicky people keeping their distance. The children’s ward only allowing one parent in with a child.

But here’s a thought for you.

We faced far more detailed pandemic questioning from the Boiler Repair team (over 20 questions) than we did when we had to access two separate Hospitals and a Surgical Theatre (one question) ….. I guess that’s what happens when people are confused, scared and left without clear trustworthy guidance from the Government.

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….

Sign of the times.

Looking across the farmers fields makes life look so simple. So straightforward. Sadly that’s not the case…..

It was like the toughest questioning from an old school Doctor.

  • Is anyone in the household self isolating?
  • Is anyone in the household classed as high medical risk?
  • Have you or anyone in your house had Co-vid 19?
  • Is anyone in the house currently diagnosed with Co-vid 19?
  • Has anyone in the house got a high temperature?
  • A loss of smell or taste?
  • A sore throat?
  • A persistent cough?
  • Flu like symptoms?
  • Hay Fever like symptoms?
  • Is anyone in the household awaiting the results of a Co-vid test?
  • I know it’s a shambles but has anyone in the household been contacted by the national track and trace system?
  • Has anyone in the household travelled outside of the country over the last 14 days?
  • Has anyone in the household had contact with someone who has travelled outside of the country over the last 14 days?
  • Does anyone in the household visit high risk virus areas such as hospitals, care homes or meat processing plants?

Once I had provided a satisfactory answer to the bombardment of medical questions, the next question was

So what appears to be wrong with the boiler? Are you sure that the oil tank is not empty!

Sign of the times really….

Fragmented

Good to see the local motorway is busy…. It’s still too busy for our son. I got special dispensation to step 10 yards out of the front gate to take this photo. Life on the edge.

It really does feel a bit like that at present. On one hand we have what apparently counts as our Government rapidly relaxing restrictions and on the other hand kids like our son….

His social and health phobias are in a pandemic fuelled maelstrom. Every few minutes he feels the need to wash his hands. To repeatedly rinse his mouth out. The fear of germs and hidden dangers becoming a real nightmare for him. He struggles to touch items like taps and handles. Even putting potentially unclean shoes on is a challenge these days. Deliveries have to go into garage quarantine for at least 4 days. Clothes need changing every few hours. And then another spanner in the works. The old house boiler completely failed. So a service call out is required. It’s now way beyond a temporary Dad patch up. That means an additional new threat to sons safe area. A house visitor! After much discussion we agreed a plan. The service engineer would come into the house only via the back door. The engineer must wear a mask at all times. I will keep 2m away from the engineer at all times. When the work is finished we will effectively lock down half of the house. We won’t venture into the areas the engineer visited for three days. Not ideal but it’s a plan. Son’s stress levels will rise but hopefully not too far. The damage to his safe area minimised.

Yet individuals like our son are expected to just re-enter the world by July 4th. The date our part time PM is declaring as the day he defeated the virus. The date he can heroically restart England. It’s perfectly fine to open overcrowded public schools in September. A few more hand sanitisers in the corridors and relaxing the rules further to allow for even larger class sizes to cope with increased teacher sickness is now the best way to deal with a pathogen. We are told ‘everything is now fine’ by the very leaders who have been proven to be wrong on virtually every single major decision they have made over the last 6 months. The very leaders who now widely seen as charlatans and pathological liars. People see this. Our son sees this. This just adds fuel to his anxieties. It’s making a bad situation even worse.

So when England reopens on the 4th July a small bungalow in Yorkshire will not. It stays on lockdown until son is able to face the world again. Who knows how long that will take. Much patience is required. We won’t be the only family facing this prospect. Again my country further fragments. I’m not entirely sure it’s ever really going to come back together again.

Red rose

Whisper it very quietly. A red rose in Yorkshire. The white rose is our counties symbol and our historic rival, Lancashire has a red rose. The two neighbours have had bloody civil wars and conflicts over the crown…. Now thankfully the battles are restricted to the sports field.

Not the only battle being waged here.

Anxiety and adverse reactions to it, are very common for individuals who are on the autistic spectrum. It can take so many forms

  • Social fears and crowds
  • Fear of being alone
  • Noise
  • Thunder
  • Germs and illnesses
  • Eating and food types
  • Animals
  • Heights
  • Darkness
  • Bright lights and colours
  • Types of clothing

Too many to list. Some of these may have sensory origins and appropriate medical help should be sort. Whether that help is available is another matter….

Our son has had to face down and battle a number of these fears. One fear in particular has been ever present. The fear of illness, germs and death. These are genuine, life altering fears and anxieties. Fears which became even more real to him when he lost his mum and both grannies in such a short period of time. We were lucky in that finally his medical notes were passed to a young nurse counsellor. Over the last few years she has done stellar work with him. He trusts her fully – no mean feat. Unfortunately government cutbacks have resulted in far less contact time. Any contact has now temporarily ceased due to the pandemic.

The pandemic has really shaken things up. For our son it has ramped up his fears and anxieties. Now they are off the chart. This manifests itself in so many ways

  • Constant hand and face washing,
  • Frequent hand washing finally taking its toll on the skin,
  • Repeated changes of clothes,
  • Reluctance to leave the house or garden,
  • Refusal to touch many items – telephones, handles, gates, letters, food packaging, surfaces and clothes which have not been washed that very day,
  • Trips to the bathroom every time a bug or fly brushes against him (summer and living next to farm land mean that can be every few minutes),
  • Refusal to venture anywhere near strangers and anyone outside of our household – one of the reasons I can’t arrange for someone to come and repair our boiler,
  • Any food deliveries or parcels having to go into quarantine for at least 4 days before they are let into the house.

So we battle on. Eventually his nurse counsellor will be able to see him but until then it’s self care.

  • We try to maintain a diary. Record and document the anxieties. Try to get a handle on what we are dealing with. Is it improving or getting worse. What improves things and what makes things worse.
  • Trying to balance avoidance with small doses of learning exposure. Yes avoidance works but it doesn’t address the route cause. So carefully controlled small anxiety exposures needs to be factored in. Yesterday that involved both of us putting our hands on the grass for a minute. Then without washing our hands observe if anything bad happens….
  • Trying to slowly control the hand washing. Setting a time limit on the seconds he is allowed to wash his hands for. Currently that’s the time it takes to say a nursery rhyme. Trying to encourage him not to use soap for a number of the hand washes. Get into the habit of properly washing hands when IT IS NECESSARY.
  • Yes he has a range of fears but we can’t deal with them all at the same time. So we only ever deal with one fear at a time.
  • Allow as much access to those things which help him relax. If he wants to go on YouTube, or play an Xbox Game, or watch a movie – then he does….

We all have fears and anxieties. Some disappear, new ones appear and some stay with us for life. With Autism and Aspergers these fears can so easily be ramped up. Yes we hopefully can find ways to eliminate our worries but realistically some fears are with us for life. I guess the secret is trying to provide a range of tools and strategies which we can have at our disposal to help manage those fears when they strike. In that way it still allows us to keep living and enjoying life. That’s the plan with our son.

Dear John

I seem to have upset someone with my last post. The person clearly didn’t want his name mentioning. Sorry I blocked you John. I assume that’s his name from the email address. My finger must have slipped. Ok John, to help hide your identity how about I call you something like Dork Head.

According to my new friend, I apparently was disrespectful to the President of the United States. Really…. I must have missed that one. I was also patronising to the British Government and our fine Brexit leadership . Ok you might have caught me on that one….. John (sorry I keep forgetting to call you Dork Head) thinks I was showing my left wing bias and I was still having a tantrum over Brexit. Apparently Cummings did act like any reasonable parent would do and the government is doing a brilliant job in controlling the virus. To doubt that is to be a traitor.

Ok lets set a few things straight Dork Head.

  • I do think Trump is an absolutely appalling example of a human being. The damage he is doing to the US and the wider world is incalculable.
  • It’s equally appalling that the self serving, incompetent buffoons in the British Government, actually think it’s a great idea to copy Trumps antics.
  • Cummings (basically the guy running our government) broke the lockdown instructions. Those with honour have already resigned for far less. If he’s such a great parent why would he strap his young son in the back of a car and then do a 60 mile road trip to test his apparently damaged eyesight. What about the other road users he would be risking. How convenient that the road trip took in a tourist destination. This was when his family was supposed to be self isolating. I bet the locals in Barnard Castle are thrilled with the idea of someone potentially with the virus, visiting their neighbourhood.
  • The fact that Johnson and Hancock are now trying to water down pandemic rules to protect one man is horrifying. The needs of the one are clearly more important than the needs of the many.
  • So a brilliant job equates to 50000 deaths. The highest number of deaths in Europe. The second highest death rate in the world. The carnage which has been unleashed on our unprotected care homes. Our health and care workers struggling without sufficient PPE. Nurses resorted to wearing bin liners as protection against a pandemic – bin liners….. One set of rules for some and no rules for others. No strategy, no plans, shambolic testing. They can’t even meet their own targets even when they fiddle the figures. When a person who has a swab taken from the nose and throat, is counted as two separate tests.

Bottom line Dork Head John. This is no government of mine. I have turned my back on them. If that makes me a traitor then that’s cool with me. They deserve zero respect. Until the likes of Johnson and Cummings are gone then I have no government. I will not follow any instructions from them, I will follow my own principles and my own understanding of the situation. I will chart my own course. If that is against the law, then tough, as Cummings would say – I’m acting as any self respecting parent would do. I also bet that the approach I will take will be infinitely more sensible and far better for the wider society than anything this bunch of crooks and clowns can cobble together.

See you John, enjoy your government. It’s everything you deserve.

Gluten and dairy

Sorry having to milk the red flowers. They don’t last long and then that’s it for another year. Sadly shopping comes round much more frequently.

Another weekend shopping experience to be quickly forgotten. Yes we are always thankful to get some stuff. Things like bathroom rolls (toilet paper) and soap are getting easier to find. Finally some popcorn. Ok it’s just salty but we can add honey to it. But then the inner grump comes out in me.

So many items we take for granted are now becoming a luxury. The words out of stock, no alternatives, unavailable are becoming such a frequent part of the wonderful shopping experience. In terms of our Son it applies to a number of his favourites

  • Tomato ketchup (has to be Heinz)
  • Pasta
  • Skinless sausages
  • Baguettes
  • Tortilla wraps
  • Mini fairy cakes
  • Tinned carrots
  • Corn on the cob.

For me it’s the gluten free and IBS friendly alternatives. Yesterday I drew a complete blank. Yes you could get a few glutenless meat sausages and a couple of soya based meal options. Not great when you are trying to be a veggie and soya blows you up like a balloon. No dairy free milk option except Soya. Not one single gluten free bread based option. Looks like I’m trying to bake my own again – the last one ended up painted and used as Jurassic World play island… Yes we got some jacket potatoes but they look like they have just been used as projectiles in the latest Highland Games, then sent to the army range for target practice.

So unless I can find some super expensive options on Amazon then this weeks meal options will be another challenge. I’m ok, I can just walk around looking permanently pregnant thanks to my inflamed IBS. It’s more of a challenge for our Son with his set eating patterns. Moving from them causes so much anxiety for him.

Dad I’ve got an idea. Let’s just have a week eating crisps and chocolate. Wash it down with full sugar coke. Not good for us but at least it will be fun.”

I’m so into this idea. Yes I will end up very round. Having a body that looks like the perfect figure. A 6. But is that not a better option than looking pregnant from dairy and soya intake. Decision made. Where’s that family sized packet of potato crisps.

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.

Boris Award

We have not awarded a Alexander Boris de Pfeffel Johnson Award for a few months. Remember we set this up to honour the fine body of self deluded, incompetent numpties in our society. Well one chap in the UK is so overdue this award it’s about time he got what he so richly deserves. I give you our much loved Health Secretary – Matt Hancock. This incompetent buffoon is apparently in charge of the NHS.

Photo sourced from Wired

Where do we start with Mr Hancock. He has enough material to write several books. Let’s hope one of those books relates to his trial and imprisonment.

  • In his time in government he has voted against giving health care workers a pay rise. They have basically enjoyed a pay freeze. As a result the pay of groups like Nurses have seen real terms wage cuts of 20% over the last 10 years. Last year he finally got round to awarding them a modest pay award unfortunately he won’t commit to awarding any further increases. His reasoning (you will notice a catalog of self delusion with Matt) that nurses have received very significant pay awards over the last few years).
  • Matt has said he would see about giving nurses another pay rise sometime in the future. However for their brave sacrifices he will give them a special badge. He is also quiet happy to see overseas medical staff who are working so brilliantly in the NHS, having to face increased registration costs due to Brexit……
  • Matt picked a fight with professional footballers. He thought that during the pandemic that they should take a pay cut and donate to charity. He failed to recognise that many do actually give a lot to charities. He also failed to call for many of the much richer backers of his own party to accept a pay cut. Interestingly when asked if Matt would take a pay cut he replied No as he was working very hard.
  • He might be in charge of the NHS but he has spoken previously about the need to sell parts of it off. He has also accepted thousands from a pressure group who wants to privatise the NHS.
  • In March 2020 most of the country looked on in horror as the government allowed one of the biggest sporting events to continue without any virus restrictions. Even though these types of events had already been banned across Europe. So why was Matt so keen for the Cheltenham Horse Racing Festival to go ahead. Why was it a good idea (apparently backed by scientific advice) to allow 180000 people to group together during a pandemic. Who can tell. It’s fascinating to note that Matt has strong links with the Horse Racing Industry and has received political donations from them. Sadly links are being established with the festival and the spread of the virus.
  • When Matt was questioned about the lack of Personal Protective Equipment (PPE) Kit for front line health workers he got a bit annoyed. He was being questioned by an MP who is working as an A&E Doctor during the pandemic. Matt told her to watch her tone….
  • Key health workers are having to reuse PPE, use bin liners and basically take risks. Those working in other care settings are doing far worse. Yet Matt proudly boasts that he is sourcing enough kit and actually nurses should start looking after the kit better. Then he made a big announcement that 100,000 items of kit had been sourced from abroad and was arriving in hours. Hours turned into days. When the kit arrived it had to be sent back as it was not fit for purpose. Strangely Matt has glossed over that.
  • Matt told an interview in March that he had been working really hard with the supermarkets to ensure food supplies during the pandemic. That was interesting as that appeared to be news to the supermarkets themselves. The message seemed to be we have not heard anything directly from the government as yet.
  • He likes to brag about meeting his personal target of the country testing 100000 people a day for the virus. What he’s less happy to talk about is the number he uses to meet his target includes missed tests, tests which have failed to be processed, tests mailed out to people (so still in the post and not yet been carried out) and tests which have failed (so need to be repeated). The actual number of daily tests performed are well below his own target.
  • He’s been talking about imposing virus checks at UK airports since March. Finally those checks are starting but not at every airport. Even at airports which will begin screening arrivals, it’s not at every terminal. Not even every plane….
  • Dear old Matt has now claimed that he put in place a protective ring around our Care Homes as soon as this crisis hit. That’s really interesting as the perceived view is rather different. Basically Care Homes have been left with no guidance, no protective kit, no testing, no tracing and no support. Care staff with little medical training and no kit have been trying to treat residents struck down with the virus. People have been dying in their thousands in Care Homes with no help from Matt. Until recently they didn’t even count deaths occurring in the care setting. Currently the estimated coronavirus deaths in UK Care Homes stand at over 11000 (likely to be much higher). That’s some protective ring Matt….

Trust me I could go on and on about Matt…..So Mr Hancock you richly deserve this award. Unfortunately your country and in particular the elderly in our care homes deserve way better than you.

What does it teach us

Dad I’m seeing either a new element which will make up the next Ironman reactor or a distant multiverse….”

Strangely I was thinking

Better pull the little blighter up, that’s where the tomatoes are going…..

It’s all about different perspectives. That’s reflected in two conversations I’ve had with teachers today. Same child, two different teachers, two different takes.

  • He’s been doing so well. Worked his socks off. Have to find ways to allow him to shine. Need to try and get him into much higher teaching group.
  • Bottom set is his level. He does struggle with the basics of reading and writing.

Again let’s not forget, teachers are humans and it’s down to individual perspectives. You agree with some you don’t with others. But they are human.

Our current Government and media fail to recognise that human element. For the last few days teachers have been demonised. Their crime being to raise safety concerns about the proposal to reopen parts of the school system. They have been branded cowards, lazy, lefties, traitors. The nurses have risked their life’s so the teachers should pull their weight and get back into schools. Those making these comments are currently working from the safety of their own living rooms. It’s so easy to attack people, to ask others to accept risk when you are bunkered down in your little safe area. To call for sacrifices from the comfort of your armchair. Tell you what why don’t we do something. Before we send teachers and young kids back to school why don’t those demanding these sacrifices volunteer to work in a care setting for a week. Until they are prepared to do this then they should crawl back quietly into their nest of vipers. Leave sorting this mess out to those who will treat people as humans. Understand them, support them, be honest with them, work with them.