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Honesty

Sometimes it’s best to check the facts behind what someone tells you. Often it’s what they don’t tell you that is the key thing….

So this week we have had utter governmental incompetence. First they proclaim that having the second highest death toll in the world represented a great achievement. Then they pronounced that it was time to celebrate as the lockdown was ending. Two days later that message suddenly changed to the lockdown is staying in place. Then Sunday night the PM announced that those who can’t work from home should start to go back to work the next day but don’t use public transport. Within hours that became best wait till Wednesday.

It’s absolute chaos. The lockdown stays in place in Scotland and Wales but not England. In those countries the message is Stay HOME. In England it’s changed to Stay ALERT. How do you stay alert to something you can’t see. You can now see your parents and family but they can’t agree on where, when and how. Already this morning, the rule on how many elderly parents you can now visit has changed 4 times….. We currently have incomprehensible madness. You can go to work and see work colleagues but you can only meet up with one member of your family. You can drive to destinations but they won’t tell you what your allowed to do when you arrive – are you even allowed out of the car? They talk about using the R number (the effective virus reproduction number) as the decider of policy. Yet they can’t measure it. In other countries they give a definite number. Here it’s always given as a range somewhere between 0.5 (in your dreams…) and something well over 1 (more likely). If we only test a few people then how are we supposed to work the number out. People with mild conditions are told to stay at home but are not tested.

So much waffle and misinformation. Clearly it’s what they are desperately trying to avoid telling us that is the key. Strangely that’s the stuff which will also show what a catastrophic cockup our PM has made of this crisis. Can we please have some some real honesty.

So in the spirit of Honesty, I will come clean with you. I’ve not been telling you all the facts. I’ve hidden something from you. SORRY. I’ve been talking about my swimming analogy. Grief and life feeling like I’m swimming towards an ever receding islands. That better stay as something in my mind and not actually happen. As I CAN’T SWIM….

Aa a kid we only had two swimming options. One was to swim in the Sea. That’s the North Sea. It’s better known as the OMG how cold is that Sea. Also in my day the local Steel, Chemical and Nuclear Plants would dump far too much into the icy waters. Big signs on the beach would warn against eating shell fish. If that wasn’t bad enough, you would get signs next to the poison signs warning Do not swim due to dangerous currents. So not a great place to learn to swim.

The only other swimming option was the town’s swimming pool. A very old swimming pool. Obviously built before they had invented the words – Heating or Hygiene. My new School would do weekly swimming lessons there. That was my big chance. Sadly that chance evaporated. The first lesson was curtailed when one of the older boys thought it would be funny to have a wee in the pool. The second lesson was only a few minutes old when part of the Pool’s glass roof started to fall down. Again we were evacuated. The pool didn’t reopen while I was at school. So that’s my excuse – I can’t swim.

See it’s easy to be open…..

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New Style

Some objects look spectacular and then you have me……

“Dad the lockdown means that it doesn’t matter what you look like. We have seen one person in 7 weeks. No one is going to see you. Which in your case today is a real bonus.”

Last night was spent listening to songs from the Stranglers and Bad Company. On Tuesday the music world lost Dave Greenfield the brilliant Stranglers keyboard player to this dreadful virus. Only a few months back we had seen him so full of life and at the height of his form playing in Leeds.

Then yesterday Brian Howe the wonderful Bad Company vocalist was lost to a heart attack. I only got the chance to see him once. A night I will never forget. It was the night my dad died. So yes I listened to some music. Music with mixed emotions. But thankfully most of my thoughts stayed on legacy. Focusing on what those two fine musicians had contributed to my musical journey.

As we all know – life has to go on. The world keeps turning. Got to keep listening to the music. Often music and life are intertwined.

So why was I looking so beautiful this morning, so deserving of that comment from our Son. I had been sneakily trying to regrow my beard. Hoping Son wouldn’t notice. Well it was spotted and I was ordered to shave. I did a beautiful job shaving the left side of my face. Then abruptly the electric razor stopped working. It went bang. So now I’m left with half a beard and half a moustache until a new shaver arrives on Monday. Strangely I can’t remember that look ever catching on.

“Well if someone comes to the door you will just have to stand side on Dad. You can decide if you go for the beard look or the shaved look. It’s your call. You could even try and confuse them. Every time they look away, turn to the other side.”

Never thought I would be such a trend setter….

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Ticked Off

Meet one of our gardens true characters. This is Rico. Yes named after the truly mad penguin from Madagascar and The Penguins of Madagascar. Rico is a bit of a show off. Our world is better for characters like Rico and wow does it need it at present.

It’s been another day of Monty Python Government here. First we had the Scientific Officer confirm that the vast majority of first and second infections in the UK came from air travellers returning from Italy, France and Spain. We then had a senior Government Minister arguing that no possible reason exists to justify introducing screening at UK airports. Ok…. Yesterday we had the Government talking up the plan to reopen many schools in three weeks as it was safe to do so. Today we have Scotland’s Government arguing that the science is clear that it’s far too early to consider opening schools. And then we get the Foreign Secretary arguing that only partial opening of schools is safe. Ok…

We have a Health Minister who is gloating as we apparently reached his target of carrying out 100000 virus tests per day on the 30th April. We will ignore the fact that most other countries are carrying out more tests. We only reached his target because he included 50000 test packs which had been rather conveniently posted out to people on that very day. That’s like me sending out 50000 letters asking for a date and then counting all of them as actual dates. After the deadline we have slipped well below the 100k testing target again but that apparently doesn’t matter now as the target has now been ticked off. I tell you what – I am with many millions of Britain’s who are getting seriously ticked off with a certain Health Minister.

AND while we are on the subject of seriously ticked off. Why can’t I bake. After all the years of practice and yet it is still clearly beyond me. Today I foolishly decided to try my hand at a French Baguette. A gluten and dairy free one. It went into the oven looking like something which wouldn’t be out of place in Parisian Boulangerie. It came out like something Baron Frankenstein had created and then immediately binned. It was basically the same shape as a cow pat. It was also as easy to cut as reinforced steel. I can’t even give that to Rico and pals. Thankfully one person is this house has talent. After he stopped laughing Son said

“You know what I can use that for. I will paint it and I can use it as a model.”

So my baguette was transformed into a remote island with snow covered mountain ranges, fast flowing rivers and deep lakes.

I bet if Gordon Ramsey had created this, it would have been called a ****** masterpiece and deserving of international recognition. That seriously ticks me off.

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Leave it

When we first moved into our home, my sister bought us two plants as house warming presents. 18 years later they are still going strong. The red one doesn’t flower for long but it’s just springing into life.

It’s quite amazing that after 18 years both plants are still going strong. I don’t have a great track record with plants. I remember my partner for a joke buying me a plant which was described as – the worlds most resilient….will survive anywhere. Clearly they missed off the words – apart from one house in Yorkshire. It was dead within months. But these two have survived. They arrived, I bunged them in large plant pots and left them. Since then they have occasionally been watered and that’s it.

Sometimes the secret is clearly to leave things to sort themselves out. Not always, but definitely occasionally.

I was listening to a politician last night talk about how schools should immediately reopen. According to him schools didn’t need to worry about things like hygiene or social distancing. Kids have been going to cramped classes for generations. Yes kids can catch our current nemesis but its an acceptable risk. Apparently teachers are paid to teach so they should ignore any concerns about things like social distancing and PPE. The economy is paramount. In one notable concession apparently government officials and assessors should avoid schools because of the risk of catching the virus. When asked about kids and parents fears the response was – tough, the economy is more important and if they refuse to attend then they should be forced to. It’s up to the government and the PM if a child attends school.

Really. I will see you in court then.

Schools do need to reopen when it is safe for kids, parents (guardians) and staff. Now is the time to make school a better place to learn and work in. Surely the days of treating schools like archaic education factories must be finally over. Yes schools have been this bad for years and years. That doesn’t make it right. We burned witches for years and years – does that make that practice right…..

And as for the idea that school visits by inspectors are too risky yet it’s ok for the kids and teachers…..

Let’s start making positive changes to schools and then we can start a process of gradually reopening schools. Fully involve teachers, pupils and parents in the process. That way we can build confidence in the system. Some families will be able to go back quickly. Others (like our son) will take longer. Some bloke in London telling people what to do would be just so wrong. My Son will only go back when HE IS ready.

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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.

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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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Brave New World Part 2

I wasn’t planning on having a two part Brave New World post but the staggering incompetence of our Government intervened.

This Brave New World post originated from listening to few callers to a local radio show. A number of times I heard the following heartfelt wish

I can’t wait for the restrictions to be gone in a couple of weeks, we will have beaten this virus and so we can get back to living like we did.

Sadly they are in for a shock. The lockdown will continue for another 3 weeks. It’s not like we have a tap that we can just switch the old life on and off. The eventual easing of restrictions does not mean we have won. Even in countries like Germany who have managed this crisis professionally, the restrictions are being eased while many are still dying. Thousands are still getting infected. We haven’t defeated this virus. All we have done is get through the first onslaught. What’s happening is that we are now trying to find ways of living and working around the virus. This virus is not going away. We wait for a vaccine. Yet even if we are lucky and a vaccine becomes available in the summer, it will take many months for it be manufactured and potentially several years before the programme covers everyone. Things HAVE TO CHANGE for this to work. It will be trial and error. Strict Restrictions may have to be enforced again.

So things will need to change. Certainly over the next year or so, maybe longer. Some things are relatively easy. Shaking hands surely has been consigned to the bin. Increasingly shops are changing how they manage customers to keep them and staff as safe as possible. What worries me is that in some areas the assumption seems to be that we can just go back to the old ways. Namely Schools.

Over the coming months schools will start to reopen. So as mass gatherings are still banned, the daily school mass gatherings will start. What will have changed. In the UK the answer appears to be nothing. It will be ok we are told because kids are at lower risk than others to this virus. Yet even today I’m listening to the Government warning

It can effect any person. ANY AGE. Even those without underlying health conditions can die from it.

But then we are told that it will be ok for the kids as more are naturally gaining immunity and yet we know so little about this virus. How long does acquired immunity really last for. Worryingly we are seeing increasing reports of people getting the virus more than once. Let’s be honest. What ever we do going forward is a risk. Sending kids to school is an increased risk now. So what are we doing to minimise that risk.

So when schools reopen – what’s changed. How are we going to safeguard the health of our kids, teachers, support staff and families. In the UK many school facilities are not fit for purpose. Insufficient and out of date hygiene facilities. A rammed timetable which provides no time for that number of kids to repeatedly wash their hands and for surfaces to be cleaned. Too many squeezed into such a confined space. Absolutely zero social distancing possible. Things have to change.

This is the time we should be looking at all options. Reviewing what can and can’t be done. How can we improve things for the better. Schools should be given the freedom and backing to make positive changes before the kids return. Give Headteachers the authority to protect those under their care.

  • Give them access to appropriate PPE and safety kit. Do kids and teachers have to wear masks?
  • If schools are forced to open before the summer break it’s likely to be happening while infection rates are still uncomfortably high. Do we initially focus on opening for just a small number of children. Just those children leaving in the summer.
  • Allow Heads to consult with parents on which kids can spend part of the school week at home.
  • Rip up the national school teaching mandates. Allow Heads flexibility over timetables, opening hours and subjects.
  • Allow them to vary teaching delivery for each subject. Some classes may need to delivered in the classrooms. But surely not all of them. For example in the UK we have access to an online mathematics teaching resource. The last few weeks have demonstrated that with the overview of the teacher, maths can be successfully delivered remotely. History can often be such a dry subject to deliver from the classroom. How about the teacher delivering lessons from historic sites (either with the class or recording the lesson). Lets make the teaching more engaging.
  • What potential untapped learning resources do we have amongst parents and the local community. At Son’s last school they did a session on the how the various body organs worked. A parent who was a Doctor delivered the lesson.
  • Some kids will need to be in school full time. But we will have a number of kids who can for at least part of the week be schooled at home. What’s the scope of saying some kids attend school for only part of the week and work from home for the rest of the week.
  • Invest in online teaching resources. I am a critic of our Son’s school. But they have invested in this area. They have delivered online schooling for every subject. Yes some work better than others – but it’s worked.

If we can deliver on some of these changes it will allow schools to space kids out more. We can bring down class sizes. We can allow those in school a chance to practice social distancing and effective hygiene. All things we are told that are essential for daily life now. Surely that’s a safer, more effective and sustainable way of delivering teaching in the modern age. I’m not a teaching expert but I have worked for years in logistic planning for public services (including schools). In our country we don’t ask the right questions early enough. Our Government does not allow Heads and Teachers professional freedom. That’s why education is failing so many kids and that’s why our schools are basically unfit to meet the current challenges. It’s time for change. We have to change or this virus (or the next one) will win the war. It’s time for change. Yes it’s time for a brave new world.

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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.

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Food

Now we are into the aftermath of the Easter Egg hunt. Son is happily piling on the calories and his Dad is looking at a bowl of dairy free cornflakes. Is this what my life has been building to…..

To be fair that calorie balance is right. Son tends to be very long and always below the median weight for his height. That is tall and slim. His Paediatrician told him that it was a great excuse never to diet. His Dad is average height (or to be strictly true – 0.5 cm above average) and keeping to an ideal weight is a bit of a struggle. That is big boned.

Son’s diet has been a struggle recently. Aspergers likes order and routine. We stick to the same 7 day food rota every week. To be fair it’s a reasonable diet with much fruit and vegetables. And many sausages…… But over the last few weeks many of his foods of choice have become unavailable. This has required change and change means STRESS. On top of the enforced food switches an increased fear of becoming ill has surfaced. So now he is desperate to eat healthy and avoid too many calories.

So the parents dilemma is trying to put that into a routine which is both sustainable and is actually a balanced, healthy diet for him. That’s at a time when fresh fruit and vegetables are often much harder to source. So keeping the calorie intake sufficient going forward might be a serious challenge. He has already started to refuse foods he considers unhealthy. He’s even started to question his chocolate intake. As the paediatrician explained a couple of years back

his weight is right at the bottom of the perfect band, but don’t let it drop below that. If that means a few more bars of chocolate than usual then that’s just fine. But just watch him. We really don’t won’t to go down the line leading to eating disorder.

Eating Disorders within the Autistic community is a significant issue. Research into eating disorders such as anorexia have found that anywhere between 15% to 35% of total cases can be linked to people on the autism spectrum. However food disorder health care is still largely done in isolation from autism specialists. Autistic services continue to be squeezed as a result of government policy priorities. So improved care and support for autistics with food disorders is unlikely to improve under the current UK government.

This may well be the latest challenge our son has to face down. So long may he tuck into his chocolate egg.

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.