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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.

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.

The Wall

Some people like to build walls. Some people have walls thrust upon them. Some walls are known by millions. This is the world famous Hadrians Wall dating back to Roman times.

It was the creative spark for the Wall in Game of Thrones. Other walls are much less famous. Sometimes the walls are virtual. This is our wall.

Ok it’s more of a fence but it does have a few stone sections. It’s not famous. Actually only son and I think of it as a wall. But to us its an important one. It’s very like Hadrians Wall and the one in Game of Thrones. To us it marks the boundary between our world and the dangers that lay beyond.

We would frequently come this way on dog walks and then stop here. That was far enough for our son. The only exception would be if it snowed. The field beyond then became our very own snow slope. A rare excursion through the Wall. But this was the boundary wall. He felt safe this side. This side of the gate was his world. The other side lay the unpredictable, noisy and scary outside world. His Wall

Now 2020 has brought its very own version of the barbarian hordes. We have been instructed to self distance and stay at home. One daily walk is permitted so the dog is brought to this gate. But no further. To go any further just seems wrong to me. To do so seems like it’s flouting the regulations. Entering into a strange, alien world with an unseen threat. My Wall.

So for very different reasons, yes this is our WALL.

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.

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.

Torquay

My neighbours bird bath. Over the years it has become increasingly hard to fill. Thankfully the Yorkshire weather usually takes care of that.

Yesterday was a decently fun day. Any day with Pizza helps. We played football in the garden. Son fired a million questions at me. Including the following belter.

Name 10 best things about Torquay”

We had been watching John Cleese in old episodes of Fawlty Towers. It’s set there.

“Son your going to annoyingly tell me that you know 10 such facts”

Actually 17 facts Dad”

I whispered a silent bugger under my breathe.

We then tried to watch the new Joker movie. I was watching it thinking the acting is brilliant but I’m not enjoying this in the slightest bit. Then son broke my thought pattern.

Dad I’m really not in the mood for this. I enjoy a good bit of Joker but this isn’t a Joker movie. It’s a movie about how a country fails to deal with mental health and how people look down on others who are different. I don’t like the way the film is doing it. Let’s watch it another day.”

So ten minutes later we had the new Shaun The Sheep movie on. That there is a movie.

But I understand what our son was talking about. Not the right time or mood for this Joker movie. There is too much going on in the world. It is also Mother’s Day in the UK. That’s one of THOSE days…. I must admit the social distancing has severely restricted our visits to the shops. That means less chance to walk past all the cards, flowers and potential gifts. Dealing with it for just one day is better than having it rammed down our throats for weeks on end.

I must admit this one has been less painful than the other ones we have endured. We have wished our lost mums a happy day. In my partners case we have kissed the ashes. Then so far we have gotten on with the job of making the most of today. My heart does go out to many mums today. Because of the restrictions and other factors outside of their control, they may not see kids and grandchildren today (or for many days to come). I really hope a way is found for a connection to be made. A text, a video call, a card, a cute photo, a virtual hug or a telephone call saying ‘I LOVE YOU’.

Stay safe and to all mums out there. Sending you a big hug. Thank you for being super heroes.

Swiss Sunday

It’s Sunday so does anyone fancy a little virtual trip to a wonderful country called Switzerland.

Yes I might be currently over 1000km away in another part of Europe. But my heart is there.

So as my world rapidly shrinks for the next few months, I think it’s time to remember the beauty of The Alps.

The wonderful and friendly people. The brilliant culture.

The clock work precision of daily life. Even its wildlife get in on the act.

The stunning clear blue Lakes.

The history.

The beautiful Swiss villages and towns.

The always colourful alpine meadows.

The crisp mountain air.

The fun

And above all the peace.

Friday I guess

Some random daffodils blooming next to our front window. These always make me smile as they just seemed to appear one year. I can’t remember planting them. Having said that, this is me…..

My mobile phone rang this morning. I could hear it somewhere really close but I just couldn’t find it before it rang off. A few minutes later I found me phone when I sat down. It was in my back pocket.

This morning it took me one hour to work out that it was Friday.

Sometimes there are no answers.

A few months back I was asked if I had found a magic bullet, a cure for it.

Sometimes there are no answers.

No it wasn’t the W.H.O. approaching me as a world expert on the search for a vaccine for the pesky virus. No don’t worry, I am still the same old dim witted goofball. No it was a parent from my sons last school. She had recently lost someone close and was really low with grief. She was desperate for the pain to go away.

Sometimes there are no answers.

Unfortunately I’ve not found a magic bullet, no cure or no vaccine that works with bereavement. It still hits me. It still hurts me. The days became weeks, weeks became months, months became years. I’m still waiting to gain acquired immunity. The route cause remains and will always remain. But I do believe that I have started to understand myself better. I am also slowly finding things that help with the symptoms. That’s something to cling on to. Sadly the things which help me, may not work for others. There is also no guarantee that what works today, will work tomorrow for me. I guess that’s the case not only for bereavement but for many other areas of life.

So what works for me (sometimes…)

  • Exercise, weights and running
  • Music
  • Movies
  • Nature
  • Walking
  • Climbing (I haven’t been able to climb in 4 years but just reading about it helps)
  • AND above all focusing on making our son happy.

Today was one of those days when virtually everything on the list did not work. All I could do was throw myself into keeping son happy. That distracted me. It got me through the day. It numbed the symptoms but didn’t cure the route cause. Now it’s 2am and those dark soul symptoms are bubbling away again. Probably going to be a long sleepless night. Will watch some rubbish TV and will again ponder over the home finances spreadsheet. Don’t know why – it’s not going to look any better when I’m tired.

It’s a brand new day. A fresh start. The old problems and hurt will still be there. But maybe, just maybe it will be symptom free day and it will be a good one.

Stay safe my friends.

Breathe

And breathe…. count to 10 and breathe again.

More and more countries go into lockdown. We are surrounded by lands where schools have been closed. Meanwhile here in England our leaders give interviews only to carefully selected media supporters. Even the Chief Medical Officer gives an interview to a right wing newspaper. On the off chance you just might want to find out what our top medical person has to say on the crisis then you have to pay for it. Apparently we might force anyone over seventy into isolation in a few weeks. We might close bars and cinemas down – maybe in a few weeks. We will definitely keep schools open – if teachers go off sick then we will just cram more kids into the available classes. Sticking to the strategy of trying to get as many of the fit and young infected so they develop immunity. All sounds a bit X-Files to me. Seems to be based on the assumptions that infection has no long term side effects and any acquired immunity will be for the long term. Both assumptions are scientifically unproven as yet. Increasing numbers of experts appear to not share the same opinion as our key experts advising the government. Plus this is our Government we are talking about – they couldn’t run a piss up in a brewery. Has anyone seen Boris Johnson over the last few days? I really hope he’s as stressed out as my kid is over the virus….. If it’s sending many of the adults into panic what is it doing to our children.

It’s an odd feeling. Do I trust our countries leaders and it’s experts OR do I rather trust other countries approaches. That excludes the overall US approach – I’m not sure waiting for it to one day just disappear really cuts the mustard as an approach.

So I am wrestling with one decision. Do I let son go to school. I have a duty of care to look after him. Do I think he is safe, secure and well cared for in the educational environment. I’m still wrestling with that one. I think many parents round here are facing the same call. Yes full on school closures have a knock on effect on childcare and staffing in our essential services. Especially as our Government has deliberately cut those services to the bone. We now only have a quarter of the critical care beds that Germany has. But on the other hand how many kids and teachers have underlying medical conditions. Are we not placing them at risk. So it’s not an easy decision. But I need to focus on my son. What’s in his best interest. We also need to keep moving forward.

I need to go shopping tomorrow for a few things. Should be an interesting experience. One of the things I need is a Chocolate Almond Drink. It’s about the only nice dairy substitute drink I have found. It’s expensive but it is always on offer for 3 for £3. Well last week it was caught up in the panic buy restrictions. Now I can only buy 2 in one shop. Suddenly it’s become expensive. What’s bizarre is no bugger else buys it. I strongly suspected that for a while as they don’t put many of these drinks out and often they looked like they hadn’t been touched since I was last there. Being a sad person I have for the last three weeks put a little pencil mark on the next available drink – it’s still been there on my next visit. So clearly they are worried that as the only buyer of that item I may panic buy and deprive myself of buying it next time. It’s all a bit bizarre. But that’s 2020 for you.

With that I will now try to focus on other things on this blog. Yes I may have to mention the pesky virus but I will try not to that much. Over the next few weeks blogging is probably going to become more important for many. A rare connection in our dislocated world. Maybe trying to create a bit of normality in this maelstrom is what is currently needed. What is certainly needed is that we show how much we love our family and those we care most for. That we try just that little harder to be considerate and look out for others in our community. Trying extra hard to be nice and kind. And yes don’t forget to find the time to care for ourselves as well. Finding that time to smile and breathe. We might not be able to agree on what the best approach is to dealing with the virus but being just a little kinder will certainly make us all feel just that bit better about our world. Thats not going to happen fighting over that last pack of 50 toilet rolls.

Take care my friends. x

Prophecy

Colour slowly returning to the garden. Sadly just in time for the next weather blasting. Just so predictable….

A few years back our son had a wonderful medical expert who did an awful lot for him. Just before retirement I remember the experts prophecy. To paraphrase

Our country’s support for kids like yours is nothing short of a disgrace. Sadly if you think that the support he gets now is patchy and insufficient, well just wait a few years. It’s likely to get very much worse. Maybe when he is 12, most definitely when he is a teenager, the minimal support will dry up. He will get reassessed by clinicians who have no practical experience of your son. They will deem him above the clinical threshold and will turn off the support. Clinical threshold should be renamed budgetary threshold. It’s not a reflection of the clinical position. He will still have severe clinical need for intervention. The support will be removed because as a society we don’t support teenagers and adults on the spectrum. We expect them to fend for themselves. If they don’t fulfil their potential then tough. I’ve seen this happen to virtually every kid I have worked with. If they achieve anything in life it’s just down to themselves and their parents. On top of this the school system just assigns them to the bin. It stinks….

Sadly the prophecy is coming true….

Just before Christmas he was reassessed for one of the support services he receives. The assessment was done by someone who had never met our son. The outcome – the service was withdrawn as he no longer met the clinical requirement.

Today we had a therapy session at the local hospital. It’s a service he has had since he was 7. It’s made some great progress over the years. It’s taken time and many sessions. At the last session his worker agreed on a programme to help with his handwriting, keyboard skills, and areas such as shoelaces/school ties. The programme after that would look at trying to help with coordination specifically aimed at swimming and bike riding. He has significant problems in each of these areas. Well guess what. At today’s session his worker was joined by a senior member of the team. A reassessment was made of his case. After a few practical exercises we were informed that he was now above the support threshold. He was now discharged from the service. They would write to school and give them some suggestions on his future schooling. We were handed a couple of information sheets on handwriting and shoelace tying. We can ask his Paediatrician to review this decision. We are on the waiting list to see a Paediatrician – currently our last appointment was over two years ago.

So we are now down to one service support now. But that is so underfunded. His worker is wonderful but because of workloads she struggles to see him now. Last year we got invites to a couple of group sessions. His last one to one session was back in 2018. Clearly it’s only a matter of time before that last helping hand is removed.

It really feels like that the health service has now dumped our son since he’s a teenager. I guess they argue that it’s an educational problem now. Unfortunately the school system has washed its hands of our son already. Like so many kids the school’s write them off. Label them low attainment. If they get the odd exam certificate in the end then school has achieved its goal. Ticked it’s box on the Government’s school assessment.

So here we are in the brave new world. We are fending for ourselves. Our only support – a few pages of photocopied guidance from a textbook. How can we have got this so wrong. How many thousands and thousands of autistic teenagers and adults are in the position. Some of the statistics on autistic suicide rates, unemployment, depression and poverty are appalling. But society doesn’t care. Our leaders don’t care. That’s a truly sickening thought.