Posted on by bereavedandbeingasingleparent · 84 Comments

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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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.

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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 · 120 Comments

Sitting here

It’s early morning and I’ve just finished my workout outside in the breezy Yorkshire air. Son is still asleep safe inside. I’m looking out into the distance and seeing no sign of human life. In the far distance you can just about see the main road leading to the coast. At this time of year it should be nose to tail with caravans and cars packed with excited families. Today it is completely deserted. I patiently waited for five minutes. Not one vehicle. Then I fall backwards and look at the heavens. An empty sky. Yes clouds and fleeting glimpses of lukewarm sun, but not one single aeroplane. To the East we can see one of the main air corridors. We often excitedly get the Flightradar24 app out and check where the many planes are heading. America, Canada, Europe, Asia. Today nothing. Not one single vapour trail.

Has the world stopped turning?

Three years ago our little home stopped dead yet the world kept turning. It was a harsh lesson. Even when good people leave us the vast majority of the world is oblivious. In the days after the funeral I would question

Why has the world not stopped…..

Well it appears to have stopped now. Yet does it help. NO.

Later I am inside listening to music on the radio. It’s a sobering experience. Usually listeners are requesting celebratory songs for weddings, anniversaries and birthdays. Today the airwaves are frequently filled with songs dedicated to rock lovers who have lost a fight with an unseen new enemy. My heart goes out to you all. It was only a matter of time before someone requested Alter Bridge and Godspeed. The finest song I’ve come across about loss. My bereavement go to track.

Test me once again
You know I didn’t do anything
Set my life on low
You know I could have had it all
Drifting out of place
With no direction and no escape
Set out all alone
Oh to a place I don’t belong
Without you
I know that I must change
Without you
I’ll never be the same
No
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Test me all the way
Surely you know
I’m not afraid
Prove now once again
That I will never see the end
Without you
I know that I must change
Without you
I’ll never be the same
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Cast away
Our regrets and all our fears
Just like
Like you did when you were here
And then the days
They ran out
And then the days
They ran out
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Cast away
Our regrets and all our fears
Just like
Like you did when you were here
And then the days
They ran out
And then the days
They ran out

Lyrics by Tremonti/Kennedy (source Musixmatch)

Even after a few hours the cars and aeroplanes are still missing. The world may still have stopped. But son is finally rousing himself. Our little world cannot permanently stop. He has a childhood to live and enjoy. So one more sip of my hot drink and find that happy face. Reach for that bag of tricks we all have and find a way to shut this horrible situation out for a while. Start having as much fun as we can. Let’s keep living and hope the world starts turning again real soon.

Stay safe my friends and I really hope you find your own way to smile. Maybe if enough of us do this then we might just be able to start the world turning again.

Posted on by bereavedandbeingasingleparent · 100 Comments

Grieving during quarantine

As much as I like writing (well my version of writing), my favourite part of blogging is getting to read other blogs. They can make you laugh, cry, think and fill you with renewed hope. One of my favourite blogs is by Katie and Evee. It really captured me as like my son, grief often hits when we are far too young. They talk about it so beautifully. It’s grief with hope, loss with the desire to live again.

I’m really excited as today Katie and Evee are here on my blog. They have also rather recklessly allowed me to write on their wonderful blog today as well.

*******************************

Grieving During Quarantine

Hello, our names are Katie and Evee. Gary has kindly shared his platform with us today to write a little about our experience with grief during quarantine. 

~

Sometimes, during big events where the whole world is grieving such as the time we find ourselves in today, our own personal grief can feel small, detached and forgotten.

Evee: We lost our Mum 18 months ago, on the 9th of September 2018. We still feel it every day, but recently, the want for our Mum during such chaos, is deafening. For example, when I was at university trying to work out how to get home before lockdown, everyone had parents on the phone to call for comfort, or to pick them up. I felt the loss of my mum then.

Katie: Over the past 18 months I have been learning what grief is and how I can fit it into my everyday life, and our blog has been a great means of doing so. When life shifts, as it tends to do, I try to bend with it. I try to shape my grief to fit the big hole where Mum used to be. Before quarantine, I was working on allocating time to fit grief into my fast-paced life; 05:45 start, the commute, work, the commute home, cooking, exercise, writing for the blog, sleeping, and amidst that, trying to maintain friendships and socialising and trying to find time for me. Each of these parts were like spinning plates.

With this global transition, I now work from home. I think I speak for the whole nation when I say that this is a hard adjustment. We are all confined to the house, yet working towards the constant harsh deadlines. This, alongside the anxiety, fear, and sadness that the whole world is feeling right now has been intense and hard to escape. For me, something has had to give in the last couple of weeks and a couple of my spinning plates have fallen down – grief being one of them. 

Getting to grips with my new quarantine routine, I have not been able to dedicate any time to reflect on my grief or to sit quietly with my thoughts at all. But grief doesn’t stop just because our lives seemingly have, and as Evee mentioned, we both miss our Mum more than ever right now. 

Evee: On the other hand, I have a lot more time than Katie, because all of my exams and most of my assignments have been cancelled. I haven’t been able to do work because it feels like the minute I do, I get an email saying that the module that I’m working on has been abandoned. This week, the only thing I have been able to count on, is my home exercise routine. 

The gym used to be a huge part of my life; it would often be a place where I think about Mum and process everything. I enjoy the feeling of my body being spent, and of stretching my aching muscles out. For some reason, while my body is active, my mind can chug away slowly and think about everything that is happening in the world, and its impact on my small world. 

When the gym became a breeding ground for the pandemic, I began to create workouts at home. I have created a hard work out for myself to do during the day. I find this gives me a sense of normality, and enables me to have that time to myself and for me to think about Mum. Like what she would say and what she would do in this situation. My one hour outside I use mainly for cycling or walking.

I also spend a lot of time cleaning, tidying and making this house cosy and homely for my little family. It is things like this that make me feel like I am helping out, and easing the pressure off of my sister and Uncle.

It is in these moments where I can clear my head and remember happier times, and think of who I have, and what I can do to get through this period. And that also involves a lot of blog writing! 

Writing has always been a big part of my life, but particularly now, I find it indulgent and wonderful to log onto our online community, talk and feel less alone.

Katie: Thankfully, the clocks went forward recently which gifted us with an extra of sunshine in the evening. I use this extra hour of daylight to take my walk and I’m truly grateful for it. Evee pointed me to the direction of a nearby, beautiful church. It has become a wonderful addition to my newroutine. I go there to stop. Sit, think and reflect. It is an hour dedicated to being still and quiet. I close my eyes and reflect upon life and our Mum. I use this time to ground myself during such pandemonium.

~

This is a challenging time for us all. We constantly receive intrusive breaking news notifications on our phones. Our head is clustered full of worries, anxieties, and fear. It feels like at any moment our spinning plates will fall. Dedicate time to yourself. Dedicate time to reflection. Dedicate time to processing. In a little while, you’ll be able to pick these plates back up.

Stay safe, sane and smiling, friend.

Today we leave you with a song from one of our favourite and happiest artists; Newton Faulkner. 

 

“My best-laid plans are washed away

No time to make ’em all again

Sometimes life gets in the way

We’ve got to keep on breathing

Look how far we’ve come

Look what we’ve made

Started from nothing, building”

Brick by Brick – Newton Faulkner

 

Katie & Evee x

Posted on by bereavedandbeingasingleparent · 79 Comments

Like new

Two daily visitors waiting patiently for breakfast. I must clean the gutters….

After yesterday’s unplanned washing of my mobile, I found myself outside in the cold early morning air. Doing a great workout supplied by a very kind friend and listening to music on my super clean phone. Crystal clear sound. In fact it’s never sounded so good. Maybe I should try my body out in a quick machine wash cycle. If only I could fit the car in our old washing machine.

I was a bad parent last night and I’m not talking about letting son watch Deadpool 2 again. School emailed all the parents to say that they had not been picking up all the students who had been submitting inferior work or worse submitting work late. So to rectify that the only thing they could do would be to send out an email each night at 11.30 to warm parents about any issues which may have occurred with their kids online work for that day. I can imagine many parents sending letters of approval in or even asking for a tougher stance from school. I took a slightly different stance on my short reply.

Please don’t bother.

This morning followed up with a much longer reply basically talking about how tough it is for many kids at present and how about school using the resources they were putting into this sanction into doing something positive – something fun for the kids. Maybe even allowing some social interaction with friends. I’m not hopeful but at least it will get me another black mark in the awkward parent log.

Anyway school might not do fun but that doesn’t mean that we can’t. It’s so important we all find ways of still living. So in between online lessons we have squeezed in some activities. Bouncing on the trampoline, Jenga, air hockey and jelly making. Then after the school day had finished we made some cakes. Played football and attempted to build the largest possible Lego tower. Unfortunately due to the wind, curious pets and my eagerness to build higher before a stable base was formed – it didn’t get much higher than 5ft. It clearly had the same design fault as Trumps Mexican Wall. Oops that’s going to bring on my fan mail from Texas again.

Over Easter we will definitely revisit the Lego tower. It might even stand up long enough to take a photo. The point is that actually fun day is not enough. It really is so tough for kids to enjoy their childhood in 2020. So much anxiety and so little space to dream. So fun day is now fun EVERY day. Maybe just like my mobile phone, we can find ways (maybe unusual) to improve things in life. WE can do this.

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Foreseeable

Looking back from the edge of the micro world. Our little village increasingly isolated. Sadly we can’t take this walk now. Son started to freak out about having to touch so many farm gates – just in case. So we are restricted to hands stay firmly in our pockets walks for the foreseeable future. How long is foreseeable these strange days….

After yesterday’s accident mayhem we approached April 1st with some trepidation. What enhanced carnage would April Fools Day bring. As life is clearly so foreseeable the answer was rather surprisingly – NOTHING. No accidents. No backfiring pranks. Zip all went wrong. My family tradition was that April Fools Day ends at midday. No accidents by lunch to distract from today’s aim.

We decided to make today a fun day. No talk of the bad stuff happening in the world. No depressing talk. No news. A day of respite amongst the mayhem. I keep saying this but if it’s bloody tough for grizzly old farts like me, what the hell is it it like for our kids. The adults are not that good at living like this, kids most certainly are not designed to live like this. So that’s why today was going to be a rebalancing day. That was the plan but not everything is foreseeable…

Today’s first lesson was Religious Studies. Given the current stress and anxieties kids are facing why don’t we pick a fun or light topic. Well the teacher picked a belter.

Look at four different countries and see what their approach is to DEATH. What are the funerals like….

Well that’s a real laugh a minute project. What next, how about History looking at the Black Death, Geography looking at the spread of pandemics, Science taking a closer look at the Ebola mortality rates.

So we have postponed the fun day for the foreseeable future. As that is clearly not very long we shall be having it tomorrow. Once we rearranged the fun day and put April Fools Day to bed for another year we could get back to normality for the rest of the day – household madness.

Have you ever pressed the start button on the washing machine and as soon as it starts spinning you notice something going round which does not look like an item of clothing. As the machine slowly turned and a rouge object kept appearing, my mind whirled – what is it. Then the penny dropped. It’s my mobile. Oh bugger. An hour later it emerged looking sparkly clean but a little soggy. In a further moment of madness I decided to put it in the pocket of one of the washed jeans and tumble dry it. Maybe that will dry it out. Please children – don’t try this at home. Only really tired parents are allowed to do such stupid things. Unbelievably the super clean phone came out dry. And it still works although I may wait a day or so before I try to charge it up.

So in our foreseeable world tomorrow is fun day and today has been ‘wow my ancient iPhone is sparkly clean day’. Who needs April Fools Day for the foreseeable future.

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Toy Story

Lovely midday weather here in Yorkshire.

It’s funny how you can overthink even the simplest of tasks. We try to make Saturday evening the official movie night of the week. A regular thing for son to look forward to. Popcorn, cola and a great movie. We save up new movies for the full Saturday experience. If we don’t have a new movie then the next best thing is a blockbuster. For days I had been working on a list of potential movies for this Saturday. Scores of candidates slowly whittled down to three favourites.

The Martian

Terminator – Dark Fate

Rocketman

So Saturday night arrived. I proudly gave son the list of three movies.

“Ok Dad, let’s watch Toy Story.”

And with that it was Woody and co. A top top movie. Perfect escapism for today’s anxious world. But how much energy did I waste on picking an unused movie list. But I guess the point is that it successfully distracted me for a few days. While watching the movie I played my usual game of trying to pick which character I was most like. Toy Story was easy, clearly I am Rex. Although this morning I am a bit more Mr Potato Head.

We often forget how stressful the current situation is for kids. Confined to base, seeing parents stressed, unremittingly bad news on social media, kept apart from friends. In our sons case the confined to base and kept apart from friends is not really an issue. But his Aspergers requires routine and controllability. These have gone out of the window over the last few weeks. Adjusting to different daily routines. Food on the set weekly schedule (which has been in place for years) becoming unavailable. A completely unpredictable world. The fear of illness and worse ramped up by a spreading pandemic. He’s so young, had to deal with so much already and he’s facing this.

He asked what my best guess was for when things might begin to settle down a bit. Sadly I couldn’t say anytime soon. When he asked about schools opening and I couldn’t see anything happening and sticking before September.

“Dad is that September 2020 or September 2021”

I wouldn’t like to bet my shirt on that. We just don’t know who long the current restrictions will be in place for. When they do come off, how long before they need to be reintroduced. But we just have to deal with that. I’ve got to focus on the one overriding aim. Give son the best childhood possible. So we make the best of the new normal. Strengthen the new routines. AND above all try to have as much fun as possible. So Toy Story is perfect. It’s fun. Thank you Woody and co.

Posted on by bereavedandbeingasingleparent · 70 Comments

Air Display

We had an unexpected visitor.

A spectacular predator.

For a few minutes we had one of nature’s great air displays. Then it was off.

That was so lucky. Would have been so easy to miss this.

That brings to mind a slightly unsettling thought. How many of us would be missed if suddenly we were gone. Kinda like Marvels Infinity Wars. It’s an even more pertinent thought these strange days. So many of us are undertaking social distancing or full on isolation. Social links have been severed. If something goes wrong, if we are struggling, if we suddenly were gone – WHO would realise. Would the world even blink. Maybe not. That includes my own little family. Phone calls, visits, invites are rare at the best of times. Even rarer now. Would the world blink for us – no it probably wouldn’t. That’s a sobering thought. It’s a sobering thought for many of us.

But I guess that’s life. So we just have to deal with it. Keep our hearts open to others and just keep living. I’m lucky as I stumbled across the blogging universe.

The majestic raptor fly past is a great reminder of why living is so worth it.