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Regardless of the weather.

It’s definitely been Social Distancing Sods Law.

It’s been a yucky winter. Storm after storm. Zero snow. Rain, rain, rain. The ground became a constant mud fest. Cold and so very grey. And don’t start me off with the constant high winds. Just not conducive to venturing out. It’s was that bad that we have not been to the coast in well over 6 months. Running became an absolute weather ordeal. Then social distancing becomes a new national obsession. We go into lockdown and guess what. The rain stops (almost completely and the ground has completely dried out). The wind dies down. The Sun decides to make a return. Perfect beach walking weather. Beautiful running conditions. Sods Law.

Unbelievably a local weather station has recoded ZERO rain in 3 weeks. This is Yorkshire, what on earth is happening. One day we even had to get the sun cream out…..

Yes no trips out and no longer runs. No social interaction. Almost complete isolation. But we are so lucky. We have a garden to help practice social distancing. Our own little world to enjoy this settled spell.

But let’s not forget that social distancing is not new here. It’s not new in many autism households. Its not new in many disabled households. It’s not new in households who have been cut adrift from society. Its not new for many single parents. It’s not new for far too many you are living alone. It’s something which happens with or without a virus. Week in week out. Year after year. Regardless of the weather. Nothing to do with Sods Law. It’s just normal life for many in our society. What is unusual is that for a brief spell, everyone gets to try it.

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It’s back to online school

Orange sky at night homeschoolers delight?

This weekend we return to the wacky world of schools version of home schooling. When we joined thus school, all parents had to buy an iPad which would become the school iPad. It would be integral to the teaching approach. It never seemed to be fully exploited. Well that was until the schools went into lockdown. Now it’s allowed the school to run the usual school timetable completely remotely. After a few weeks we can confirm that the technology works well. The quality of the lessons varies between subjects. Some of the lessons just feel like it’s basically read a text book for an hour. Lessons like Mathematics have used existing online teaching apps which work really well. To that extent it definitely feels like Maths could just become a home based lesson as standard, with the teacher just providing a guiding overview and tracking development.

Lessons like History can be so hard to bring to life. They tend to be too dry for many kids purely delivered from the classroom. Anything which opens up this teaching approach gets a thumbs up from me. Suddenly History is exploiting interactive media. How about the next stage being history lessons delivered from local historical sites.

P.E is a subject he dislikes at school. Too much pressure, too little time to change clothes in cramped and noisy changing rooms, so many kit items to remember. Yet at home he has loved following the lesson requirements in the safety of his garden. English is another subject which has worked much better in the home. At home Son is much more relaxed and will happily ask for help. In the classroom he just won’t ask….

What hasn’t changed sadly is some of the marking and review processes. That doesn’t apply to all the subjects. Some of the comments are supportive, encouraging and helpful. Unfortunately too often correct spelling is stressed rather than actual content. How is making a dyslexic type out each spelling mistake three time going to help him. It will certainly knock his confidence. He had to submit a project which he worked really hard on. When I checked it I was seriously impressed. I learnt a lot from it and I got an A in that subject at college. Yet when it came back from the teacher the only comment was that it was ok and please correct the spelling mistake…. The look on his face when he read that feedback told me everything.

Then we have subjects that won’t accept work unless it’s done on paper and then submitted via a photograph. What is certainly not helpful is making someone with handwriting problems write (not type) work out then mark it down as not being good enough and needs more work. What’s not good enough is that teaching approach.

Going forward he is happy to keep working through schools online programme. He is hoping that it will run for the rest of the school year. From a parenting point of view, I’ve got used to it pretty quickly. The quality of the teaching has varied between subjects. But without a doubt Son has been much less stressed out about school. The question will be what happens when schools reopen. Ultimately it’s his call. If it’s September then has time to have a good think about if he wants to return or opt for full home schooling. At least now we will have a better grasp on what homeschooling may entail. What works for him and what needs changing. If schools open in the short term then it will force his hand. In the current climate and without significant change in school practices, he’s just not ready to go back. I suspect it’s the homeschool option. At least he won’t be crashing into homeschooling, he will have already tipped his toes in the water. And whisper it quietly, it’s not as daunting as it seemed 6 weeks ago.

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Rolling in

This week along with some more flowers blooming, the school emails have steadily been rolling in. I’ve been lucky with 6 emails. Son not so lucky. So far he has 35 unread teacher emails and another 5 this morning. I thought this was the Easter break.

“Dad I’m not reading these until the weekend. I’m on holiday”

Couldn’t agree more. Can we just let kids have some fun and have a break from all the crap.

“Next holiday I’m putting on out of hours message. Something like – I’m now on holiday which finishes on xxxxxxx if you have any concerns please email my Dad.”

Yesterday was one of those rare Yorkshire days. A day when you here the little used words

“Dad I think we need sun cream, do we have any”

Mad parenting panic quickly followed by a mad house search. This is Yorkshire. I remember going to a Test Match (cricket) here many moons ago. The helpful announcer kept playing Government warnings about the need to where hats and use sun lotion to avoid the harmful effects of sunburn. It was ironic as it chucked it down all day and we never once had a glimpse of the sun. Everyone was huddled under umbrellas or seeking cover from the torrential rain in the beer tents. Our county is many things but if you had to list the top 1000 things about Yorkshire, the words hot and sunshine are never going to feature.

After a chaotic search a tub of factor 30 was found. Probably last used on a trip to Switzerland.

“Is it still in date Dad?”

I didn’t need to look at the date to confirm the answer. But in the spirit of accuracy I checked. It was only slightly….. 2018.

“Well it will have to do but I will be informing my solicitors”

We needn’t have worried as this is Yorkshire. In the time we had been protection hunting, the dark clouds had rolled in. Now the most appropriate form of protection was a jumper.

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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.

Posted on by bereavedandbeingasingleparent · 84 Comments

Care Bear

The kindly local farmer has been most busy this year. Much needed light amongst the darkness. The Care Bear is well off the path so is maintaining at least 4m of social distancing. That’s a good idea as it was windy.

On the dog walk this morning we saw a number of cyclists and runners on the distant country lane. They were all trying to observe the new social distancing advice. All seemed to be keeping the 2m recommended separation. But is it enough. I was reading an article by a leading virus expert. He said that the 2m separation was a great idea but it was based on quiet air conditions with people either stood still or walking. If the air is turbulent or it’s windy then the safe separation distance should be increased. If you are running then the safe distance behind you (in the wake) needs to be increased by up to 10m. For cycling the safe distance behind is upwards of 20m. Sadly every single person running or cycling was sticking to 2m. So much confusion. So many different expert views. Deep sigh.

One of the great Easter traditions has been performed yet again this morning. Dad forgetting where he hid the Chocolate Eggs in the garden. Followed by

“That’s a great egg. Thank you Dad. Is that the last one?”

Slightly puzzled look from Dad….

“You do this every year. You can’t remember how many you hid can you?”

Yes it’s only a small number. I couldn’t be sure if it was three of four eggs. Was it five.

“Well I’ve found three eggs. That’s a great number but I’d better keep looking. Just in case.”

Good job as 10 minutes later we found the fourth behind the oil tank. I should have realised that when I bought them in February they were on offer, buy one get one free. So why would I just get three…… I will say it before our Son chips in with it.

WHAT A PRIZE MUPPET.

Last year I did the same. Only realised that we had missed an egg when a few months later I found it while cutting the hedge. Then the year before was a spooky one. We had cleared the garden of eggs then when we woke up the next day we found another egg on top of the sundial. I definitely didn’t put it there and it was that obvious we surely couldn’t have both missed it. Bizarrely it was a brand I can’t remember ever buying. The Easter Bunny must have brought that one overnight.

Well I hope the Easter Bunny calls again tonight. This time for me…

After Christmas I went back onto my gluten and dairy free diet. This makes Easter difficult. So I thought that I would treat myself to a dairy free egg. Unfortunately they have been out of stock in our local shops. I guess it’s because they are not seen as an essential item. Just before Home Deliveries became unavailable I managed to add a suitable egg to the delivery list. Job done for Easter. Sadly not. When the delivery arrived the egg had been substituted to the closet available alternative. A packet of gluten free cornflakes. So as people took into their eggs think of me with my bowl of cornflakes. That’s a dry bowl of cornflakes as milk alternatives are also out of stock. But hope exists. Tonight we move to plan b. Cornflakes with gluten free pineapple jelly. The jelly was sent as a substitute for gluten free gravy….

Try to keep smiling everyone.

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Good Friday ?

The headline in the prime UK gutter newspaper (a publication so bad and so vile I can’t even write its name down) was apparently today

Boris is out – now that really is a Good Friday.

Just those words on the front page….. Yes anyone leaving intensive care in a better state than they arrived is a wonderful little victory but it misses one rather salient point. At least 5000 people died in the UK this week and god knows how many worldwide. Will it be a good Friday for the scores of families who will be bereaved today……. The UK is now recording more deaths than any other European country and because of the shambles the government has made on testing – this probably vastly underestimates the real figure. But no need to report on that….. No need to talk about our wonderful nurses forced into using bin bags as protective uniforms.

What would be a Good Friday would be no one suffering today with only one obituary required – one for that loathsome newspaper. I remember once the newsagent accidentally sent that paper to my mum instead of her normal one. She refused to touch it and she burnt it on the doorstep. Stick that in your pipe and smoke it Murdock.

Let’s move on to the real Good Friday.

Our Good Fridays were slightly odd. Normally my partner would introduce all the family traditions. But not on Good Friday. I can’t remember my partner doing anything different on this day. She was a devout Quaker, maybe that was the reason. I do know that I was her biggest trial in life as we were very very different.

For some reason my family traditions kick into overdrive on Good Friday. So unlike me. What’s the old phrase

You wait hours for a bus and then three arrive at the same time.

  • So each Good Friday we would
    • Not be allowed to drink milk all day (No idea where that one came from, probably one of my random dreams tricked me into that one),
    • First food of the day had to be an unbuttered Hot Cross Bun. Not allowed to use a knife to cut it. Every year I’ve done this an yet I don’t like them. My partner hated them so I had to eat hers as well. Then Son hated them as well so that was THREE buns I had to get through.
    • Can’t eat meat all day.
    • The meal at lunchtime had to be fish.
    • Attend a morning cross parade. These don’t tend to happen here anymore and anyway this year they would be banned.
    • No alcohol before you have had the fish. That was actually a very hard challenge when I was at University.
    • We would fly a kite on the afternoon. Apparently this is a tradition which originates from the Caribbean. No idea why that one reached deepest Yorkshire.

    I have to say this year some of the traditions have been dropped while some are just happening out of our daily routine. No milk or meat so far but that’s because son has not had his lunch yet. I’m tea total these days. Not enough wind for a kite. We might have tuna for lunch if I can convince son to change his food routine. However a pesky hot cross bun (plus the one our son won’t touch) will be waiting for my 2pm meal starter. Unfortunately due to the currents our dog is not allowed to help eat them. Thin king about it I might start a new tradition. Have the smallest bite of the bun then share the rest with the birds. That’s a tradition I might be able to stick to.

    Posted on by bereavedandbeingasingleparent · 133 Comments

    First rant of the month and then the garden beach

    Before anyone says anything this photo was NOT today and not 2020……

    It’s a bizarre country which I live in.

    A place where British war time spirit and a stiff up lip is the way to defeat this unseen enemy – well that’s what our newspapers are claiming. No I think you will find that it’s actually antibodies and vaccines that will do that. Self distancing will help dampen the curve but on its own it will not do the job.

    A country which for 10 years has invested heavily in academic testing for an increasingly younger range of school kids. The only principle in UK education is meeting government targets by testing millions of kids, week after week. Test, test, test. Yet the same Government can’t see the importance of testing when it applies to a pandemic. They can’t even provide virus tests for our brave medics and front line carers. Actually the can’t even provide the appropriate protective kit to all our nurses. Suddenly we have a mad scramble for kit, tests and ventilators. It’s not as if the Government didn’t know. Three years ago a study reported to the then Government on how poorly prepared the country was for a pandemic. The Government (including many in the current cabinet) decided to bury the report.

    That’s probably why the UK is soon going to have the worst pandemic mortality rate in Europe.

    Deep deep sigh and divert gaze to domestic matters.

    “Dad would you mind if I didn’t do any revision this week for the school tests. Not sure I’m in the right frame of mind for it.”

    Given the current climate why on earth is the school doing exams. Oh I forgot – it’s government policy. Can we just give the kids a break. Especially as the tests are based on such a narrow educational range. It’s more about proving to kids what they don’t know and spotlighting their individual weaknesses. What about letting kids show what they are good at, what they do know.

    “Ok Son that’s fine with me. When you feel the revision force is with you then if you want to, then do some. If it’s not then just have FUN.”

    And that’s what we did. We had to abandon the planned eat some whip cream while bouncing on the trampoline competition. The pigeons who have adopted our garden have now decided to build a nest right next to the trampoline AND it now has eggs. So we opted for plan b and c. Try to make some homemade ice cream. Followed by setting up our very own beach. In the garage I found a couple of old bags of play sand. So that was emptied onto the little patio and the old kiddies paddling pool was filled with water. Shorts and suncream on. An MP3 file of seaside bird and animal sounds was played on my portable music player. Hey presto we are at the beach. Ok we need to work on the beach sounds. The sound of whale songs and walruses fighting are not that common on the Yorkshire coast – but that’s nit picking. As a safe, social distancing adventure it most certainly worked. Now I just need to rebag the sand for our next trip. Maybe it’s to a desert.

    Posted on by bereavedandbeingasingleparent · 102 Comments

    Fit for radio

    The walk across the local farm land always felt like top toeing across a minefield. Constantly looking down at my feet for the myriad little surprises. Cow piles, sheep droppings, mole hills, rabbit holes…. BUT NOW after weeks of walking exactly the same path it’s all changed. Suddenly my brain seems to have mapped out the various dangers. Now I can look up and take in the view. Luckily one view I don’t need to take in is my face. It’s definitely a face fit for radio.

    It was Wrestlemania this weekend. It went ahead without a crowd. We now have a tradition in our house that we stay up and watch it live. Have a party and a bit of a challenge. See who is best at predicting the results. Last year my inevitable defeat cost me a painful forfeit. Eating the hottest chilli we could find in the supermarket. My eyes are still watering. This year the stakes were raised significantly…..

    With his Aspergers, Son is often a creature of habit. Change is avoided. That includes things like clothes. As he grows out of stuff we need to find larger versions of his existing items. That also applies to me. He doesn’t like me to change. I have wanted to go for a really short hair cut for years. Unfortunately that has never been approved by his Lordship. Until now.

    “Ok Dad let’s stake your hair on Wrestlemania. If you win the prediction game then you can have your haircut. But if I win you can’t AND it will cost you your beard.”

    Son found some old photos of us as a family of 3 featuring a beardless Dad. I think he secretly wanted me to go back to that look. So Wrestlemania came and went. I gave up counting after Son successfully predicted the first 10 matches and I DIDN’T. The end result – the beard went. I’m not sure I recognise that face in the mirror anymore. Son says I look younger. I’m not sure about that but we can both agree on one thing. It’s still definitely a face best suited to radio.

    Stay safe everyone.