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.

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.

Brakes

A stream about 5 miles from our little bungalow. Near the boundary of my current world.

It’s funny as a kid I always thought that my world was a small place. We didn’t have much money so holidays would tend to be just day trips on the train to places like Whitby and Scarborough. If we we’re lucky a school trip would take us maybe 50 miles in land. Dad had a car but it was only used sparingly – just for getting him to work. I remember watching exotic places on the TV and thinking one day I want to see them. I looked at books about mountains and so wanted to see The Eiger, The Matterhorn, K2 and Everest. I always thought that as I got older I would travel more. My world would grow and the world would shrink.

For a time it did workout that way and yes I did get to see The Eiger and The Matterhorn. I visited parts of Europe. I even got to see South Africa.

Then the world shifted again. Autism. Bereavement. Money concerns.

Now I find my world rapidly shrinking again and the world growing ever larger. Increasingly son sees comfort in his own little world. Our house, garden and the landscapes that immediately surround him. Longer travel is so difficult for him. It has to be mapped out and carefully controlled. That’s before we factor in the limiting factors of travel as a single parent and money constraints. My world is shrinking again. Even work has to operate within these constraints. My world has shrunk. One of the few bridges into the wider world is the occasional concert. These still work for our son.

We are due to travel to see The Who play in a couple of weeks. We will have to travel by car as public transport here is minimal and stops by evening. Regardless of its availability son struggles with buses, trains and planes. These are likely to induce panic attacks. So we travel everywhere on foot or by car.

Two weeks ago the car was in for a service. They found problems with the brakes which needed some parts to be replaced. The garage said I was ok to drive it for a couple of weeks until the garage could fix it. So this Monday was supposed to be the repair day. The garage phoned today to apologise. They we’re going to have to cancel the repair for a few weeks. They just can’t get the parts. The Parts Suppliers are out of stock and are waiting for new items to arrive from China. The garage is a national chain and all the branches are out of these parts. Apparently all the other rival garages in the area are in the same boat. So the repair is on hold. The suppliers are hoping to have new stock arrive soon but that may not be until April. So I’ve been told to try and really limit the car use until the parts turn up. My world shrinks further.

So in a mirror image of my childhood – the car will only be used sparingly. Just for the occasional short distance work trip and the school runs. A long distance concert trip is probably not a practical option.

My world has shrunk again but as ever we will make the best of it. Think our carbon footprint. Think more fun at home. Enjoy what we have on our doorstep.

Sausage Roll

Castle Howard is only a few minutes drive from our house. The photo is Castle Howard not our house. Sadly we don’t go that often now as it’s so expensive. Which is a shame as it’s truly stunning stately home.

Work came to a premature end at 10am this morning. That’s the deal with zero based contracts. Yes they are flexible and can fit round being a single parent but absolutely no guarantee of work. So a deep blue sky beckoned a first run in ages. The plan was to drive home and just run from the bungalow. But without really thinking I pulled over at the next village when I saw an enticing path sign. I thought ‘well lets see where this takes me’. The answer was stunning run which skirted the edge of the Castle Howard estate. All for free.

My trail shoes don’t have much tread left on them so I was taking a bit of a risk running down a steep muddy bank. I lost….. A sudden grip failure resulted in a crunching fall followed by several rolls down the steep slope. All sides completed covered in mud. After a few minutes the mud began to dry in the sun. I now know what it feels like to be a sausage in a sausage roll…..

After the painful and slightly embarrassing slog the run flattened out. The reward was glorious views of Castle Howard and the Estate. I had the trail to myself which gave me time to think. Probably too much time. It’s at times like this that my mind wanders to what has been lost. At least with running I do have a release valve. Just run quicker. It works but wow I’m knackered when I finish.

It was a wonderful run around a stunning track. My partner would have loved it. She would be definitely walking rather than running. I was sad that she never got to see these views. I will just have to look for the both of us. I really hope that works for her.

The road

The road often seems so long and never ending. Somedays it is, especially when your trying to run along it straight into the teeth of a biting north wind. Absolute purgatory. But then other days the road is short and manageable. Even in my rubbish car it only takes a couple of minutes to drive it. It’s good to remind myself this every so often.

In those dreadful early days of being a widow and a single parent the journey in front of me looked so daunting. So beyond me. A road with seemingly no end. I would shake my head and just think – I can’t do this. Yet I still set off down that road. I didn’t want to but I was faced with no choice. I was a parent to a young kid who has just lost his mum. He’s was also trying to get his head round not being able to read and that new word – Aspergers. I owed it to him to at least try. Nobody else would. It was down to me.

He only gets one childhood and it better be as brilliant as is humanly possible.

So I started down that road. I had no idea where the road led to. I was so confused. As a result I was hoping to find a ready made parenting plan – an easy to navigate road map. As hard as I tried I just couldn’t find a map which I could use. I searched everywhere. So many books and articles were scoured over for that magic road map. But in the end it was a futile search. No one is going to do this for me. No easy shortcuts had been forged by others. It was down to me and I needed to own it.

Fast forward to 2020 and I’m still here. Still a widow. Still a single parent. Still slightly confused. Still travelling that road. Still haven’t come across a map. But there is a difference. That road doesn’t quite feel so daunting. It doesn’t feel quite so long now. That’s progress in my book.

Laughter

Most runs around here end up with one last slog up this winding hill. A number of cycle clubs use it for races. The British Universities use the hill for their national road race championship. The 25% twisting ascent is a real leg sapper.

But on the bright side it’s a rapid, helter skelter of a descent. On one cycle decent I lost control and ended up in the farmers field. Still not as bad as one cyclist you apparently was rescued after being found face first, stuck in the roadside hedge. You could only see his legs sticking out. That would have cracked me up. As Monty Python would sing – Always look on the bright side….

Over the last couple of years I’ve learned the importance of laughter. It really has been a life saver some days. Really dark thoughts have been broken by a random laugh. A few weeks after my partner and my mums funerals I was as low as I have ever been. But a random chance encounter with Python’s Holy Grail movie lifted my spirts. It was bizarrely the scene where Eric Idle was collecting the dead bodies on the cart and John Cleese tries to get rid of a ‘not’ dead old man. It just touched a nerve and I laughed a lot. It just seemed to brake the spell.

Yes laughter breaks the spell. It’s distracts me. In computing terms it seems to reboot my system. The problem is that often when you need that reboot the most. At your lowest ebb. The hardest thing to do is laugh. The mindset is that your not allowed to enjoy a bit of life. Laughing is just not acceptable. Almost as if it makes you a bad person. Really. For me the two of the nest things I’ve learnt about grief

  • It’s really ok to cry AND
  • It’s really ok to laugh as well.

The news is unremittingly grim at present. Nothing like a pandemic to bring out the worst in our leaders, our media and sections of the population. Today the media was full of misinformation and photographs of empty supermarket shelves. Panic buying has started. So with some trepidation I ventured into the supermarket for a bottle of milk and a loaf of bread. What a pleasant surprise to find a well stocked shop. Then one last gift. With a sense of humour the store was running a promotion on Corona Beer. Clearly with shoppers loading up with the stuff that it was selling really well. Certainly better than in some parts of the world. It’s a shame that I’m on the wagon and that I never liked the stuff anyway. But it did get me thinking – maybe the World Health Organisation should continue naming viruses after products. Especially if it leads to heavy discounts. Maybe the next pandemic could be called the Cadbury’s Cream Egg Virus. I look forward to that discount….

Always look on the bright side of life….

Unwanted anniversary

The way forward is sometimes difficult under foot.

Another storm is heading our way. Storm Jorge. The world news is grim and unremittingly depressing. Definitely no solace at school. Son scored 14 out of 15 in his Drama spelling test. The one he got wrong was Unferth. Unferth is a warrior who opposes Beowulf. It’s not a word he’s likely to use much in life. I am so pleased with son. I wouldn’t have got 14 and I’m not dyslexic. Yet the teacher told him to try a bit harder as a few of the kids had got all the spellings correct. Deep sigh.

Today has been tough for me. The above factors don’t help but they are not the main cause of my struggles. No it’s a grief thing again. Son’s birthday is fast approaching. Since she left us this is just one of those times. Her organisational skills would go into overdrive as his birthday approached. She would be so excited. Her love would shine through.

Then the world changed. (That was going to be the original name of my blog site but I messed up the setupBereavedDad was a cockup).

So today I was trying to sort out his birthday and I felt so wrong. She should be here enjoying this time as well. I’m not often bitter but today I was. What is making this birthday so raw is that he is turning into a teenager. My partner has missed so much of his childhood and never got the opportunity to see him grow into a teenager. It wasn’t supposed to be like this.

But unfortunately feeling sorry for myself isn’t going to help. It’s not going to bring her back. It’s certainly isn’t going to deliver any presents. It’s not going to yield a happy birthday for our son. It’s not going to make him smile AND his smiles are the only currency I should deal in now. So give myself a proverbial massive kick up the butt. Turn the news off. Play some loud music and fully commit to birthday mode. That’s what my partner would do and by jiminy – that’s what I am going to do.

So yes the way forward is sometimes difficult under foot but you still need to follow it.

Poets Society

The feeding zone has been active today with the usual characters. Yes the characters are making a mess of the lawn but it’s always so good to see them. We don’t get too many human visitors these days so who is going to notice the rugby pitch of a lawn and I don’t think non-human visitors are that fussed.

Another largely sleepless night. One short dream, a viewing of the stunning yet grim Everest movie and a bout of late night blog catchup. While reading a friends post a thought entered my zonked out brain. How many other souls are struggling with sleep currently. We really deserve our own secret club. Maybe the name should be The Dead Tired Poets Society. Dead Poets Society is a truly stunning movie. If we want to be selective we could be the Dead Tired Parents Society.

But why stop there. We could have so many subgroups.

For the financially challenged – The Dead Broke Poets Society,

For the puzzled amongst us – The Dead Confused Poets Society,

For the bad cooks – The Dead if you eat this cake Poets Society,

For those feeling happy – The Dead Chuffed Poets Society,

For those who can regenerate – The Deadpool Poets Society,

For the rubbish Fortnite players – The Dead in five seconds Poets Society,

For the rubbish negotiators – The Deadlock Poets Society,

For the strong amongst us – The Deadlift Poets Society,

For the gardeners amongst us – The Deadheading Poets Society,

For the Monty Python lovers – The Dead Parrot Poets Society,

And for the impassive people – The Deadpan Poets Society.

Today was another fun day. Fun but with son’s anxieties bubbling just beneath the surface. I have emailed school to tip them off but deep down I know they won’t do anything. The teachers won’t be informed and if they were – what would actually happen. Not much. I’m not sure how much training this group of teachers have had in dealing with anxiety. They certainly have had little specialised training in areas like dyslexia and autism. Maybe that’s why my first questions to the teachers tends to be

You do know he has Aspergers and you do know he has Dyslexia and you do know he has Dyspraxia.

The look I get back with the generally vague replies suggests either they don’t or they do but given the 1000 things they are dealing with this is never going to be a priority. So my parenting anxieties are mounting again. That’s why having fun is so important. It’s great for my son and it’s such a release for me. A release which is even more important when sleep fails you. Can you guess what tonight’s insomniac movie is. I’ve dropped enough clues.

Dead Poets Society.