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Yellow

Suddenly colour is returning to Yorkshire. Well one colour. Most definitely yellow. It is such a welcome sight after so many grey months. Takes your mind off other matters.

Need to be open and honest with son.

“Dad whats the number of people with the virus now”

“Officially its 750 but now they say up to 10000 may have it”

“OMG I thought the experts said our approach was working well. How can they have got the figure so wrong”

“It’s down to testing. For some reason we only tested those with symptoms who had visited high risk countries. They didn’t seem to test if you had been abroad. Clearly they missed a lot of proper cases.”

“That sounds so stupid.”

“Yes it’s not great is it”

“Dad why hasn’t Boris closed the schools down yet”

“Apparently it’s on the basis of expert advice.”

“Many other countries and regions have closed them down, won’t that be on expert advice as well”

“Apparently Boris and his experts think that school closures and banning public events is not based on the correct expert advice.”

“What makes our advice better then”

“Probably need to ask an expert about that. We seem to be saying that if schools are closed it’s pointless as the kids will mix in large numbers anyway. We also seem to be saying that if we stop people going to things like football and concerts then they will just go to smaller events. And they argue that smaller events are potentially worse sources of infection. Football has been stopped for a month now but that was not the government, they were happy for the matches to go ahead. It was the Football Authorities who stopped the games.”

“That sounds a bit dodgy. Surely Dad the point is to reduce the number of people you mix with. Schools, football, trains, buses and concerts are some of our biggest mixing areas.”

“I bet they will eventually have to change their minds on some of these. But it is daft.”

“I think a big part of it is that the last few governments have really cut back on the NHS and made child care more expensive. They don’t have enough doctors and nurses. If schools close then a lot of parents will not be able to go to work as they will need to look after their children. The NHS can’t cope with that now. I’ve also heard several in the government mention that shutting schools will hurt the economy.”

“So it’s about money then really”

“Probably is but they won’t say that. Easier to just tell people it’s expert advice.”

“So how are they trying to control the virus if they don’t close things down.”

“It seems to be something called the herd. The Chief Doctor talked about needing at least 60% of the population to recover from the virus for the country to start to develop immunity from further outbreaks”

“That’s the plan. Wow. So we are trying to get something like 40 to 50 million infected here. Going to be an awful lot of not very healthy or old people caught up in that. That’s not a good plan. Sounds like they have decided not to do anything. Rather have people keep making money than keep them safe.”

“Totally agree. Surely locking stuff down for a couple of weeks will help dampen the virus down. At least push it into the summer months.“

I’d rather take my chances in France or Germany. At least they are trying to still contain it.”

“Dad what’s the new rule about school and being ill. If I cough does that get me a week home isolation.”

“Basically those are the new rules“

“Well Dad. COUGH. COUGH. That should do it. Wake me about 11am on Monday.”

Well next week I will probably get the chance to check out more yellows. My zero hours contract is living up to it’s zero in the coming days. Next week I might get a couple of hours work at most. So the new sports car and beach apartment in Monte Carlo will have to wait a few more days. But it doesn’t matter in the scheme of things. It really doesn’t. More important things in life. As a much wiser blogger than me put it – it’s time to breathe….

Update

Two hours later news broke that the government has reluctantly banned large public events. Not on health grounds but to relieve pressure on emergency services. I guess the real reason was the events were getting cancelled by the organisers anyway and the government didn’t want to be seen to be dithering.

Posted on by bereavedandbeingasingleparent · 80 Comments

Tree

Last night I had one of those dreams. That type of dream that leaves me breathless and unnerved for hours. Unable to sleep until after 3am then startled back into sleeplessness forty minutes later. All because I blogged briefly about throwing my knickers at Tom Jones.

I was walking across farmers fields. I was in agony as I was walking barefoot and the ground was rock hard with frost. With every step I seemed to tread on another sharp thorn. On my MP3 player was one song on repeat. Green Green Grass of Home. I was heading towards one tree. A tree on top of a small hill. The only tree on that hill. The closer I got the ground became more painful. Then the heavens opened and it started to rain increasingly hard. So hard my skin started to sting. Then I arrived at the small tree. A hangman’s noose swaying slowly in the wind.

That was clearly enough for me as I suddenly bailed out of that fun little dream.

Green Green Grass of Home was one of my mums favourite songs. You would often walk through her front door and hear Tom beautifully signing this song. The song written by Curly Putman was one of her favourite sad songs. It’s all about a man facing his last night on death row.

In the shade of that old oak tree
As they lay me neath the green, green grass of home.

What’s the lesson from this nightmare.

Is it

I really should stop blogging as it gives me nightmares.

Or

Next time I do have to throw my knickers at Tom.

Posted on by bereavedandbeingasingleparent · 85 Comments

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.

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Dreams pesky dreams

If I was a flower I wonder what dreams I would have.

Before my partner died I would have the occasional dream that I could remember, but not that often. My sleep would be disrupted but usually by our son. Plus back then, when there are two of you can take turns on the sleepless shifts.

Then after my partner died sleep became increasingly disrupted. Son has always had an interesting sleep pattern. Whatever we have tried has never managed to change that. Eventually the health professionals just called it – it is how it is for him, it works for him, so just run with it. Basically his mind and body are too active for sleep anything south of midnight. He will usually fall asleep between midnight and 1am. Then he will sleep until 6am until his mind and body kick into active mode again. When he was younger he would constantly wake during that time, so one of us would need to be with him to get him back to sleep. But as he’s got older he more often than not sleeps through. A couple of times a week he will still wake and I get the night visits. Checking I’m still here, wanting an answer to a question or wanting to tell me a fact.

Dad Harold (that’s Harold II) was not the last english Saxon king. William beat Harold on the 14 October 1066 but wasn’t officially crowned until the 25 December. In theory Edgar Atheling (Edgar II) was king. He had the strongest blood claim to the throne. Night Dad.

But as our son’s sleep has stabilised my dream pattern has increasingly disrupted mine. It takes an age for me to get to sleep then all to quickly a vivid dream wakes me and then that’s usually it for the night – no more sleep.

The dreams have also changed. I have had three distinct dream stages. Each stage has its own unique dream type – each night its the same sort of dream.

The reliving fond memories stage. This was the nicest, yet saddest stage. The dreams would relive completely accurately lovely memories. Maybe a holiday trip, a birthday, an early date with my partner, finding out when we we’re going to be a family….

The bizarre memory stage. Then suddenly the dreams changed. They still were based on fond memories but always morphed in some bizarre way. A dream about a lovely family trip to a petting zoo, but in the dream the cute little animals were replaced by dinosaurs – we still petted them. A dream about sledging with son on one of our few proper snow days. But in the dream the white snow had become pink.

The current dream stage. The weird/unsettling dreams. No more dreams based on real life memories. Just unsettling made up dreams. Last night for example my partner (who was pregnant) and I had gone shopping in this made up out of town shopping complex. We had gone into a huge furnishing store. We found some items we needed and I went looking for a shopping trolley. Couldn’t find any trolleys inside, so I looked out in the car park. Still no trolleys. So I walked across to the next store which was a supermarket (ASDA). They had trolleys but they needed a coin to release them. None of my coins would work. I then couldn’t find our car to get more coins. So I ran down a short slip road to the next group of shops. Here the trolleys were all vandalised. I ran down another slip road to the another shop which was a huge DIY store. They had trolleys but they wouldn’t push correctly. It took all my strength to move them a few inches. Finally I found an electronics shop which had trolleys that worked. But now as hard as I tried I just couldn’t find my way back to the first store with my partner who would be getting increasingly annoyed with me. I was now completely lost and in full panic mode. Then I woke up. Now I was completely unsettled and that was it for sleep. Too tired to read or blog. So all I could manage was to watch crappy TV and listen for the clock to tick round until son woke up.

I look back with fondness at those memory dreams. Even those bizarre Dino type memory dreams. Yes they could be sad but they where a wonderful gateway into the past. But these current dreams I really hate. No sweet memories here just my brain finding new ways to unsettle my soul. Sleep is now something I desperately need, yet I struggle to do it. It is also becoming something which brings me nothing but stress. I hate being stuck in this ever decreasing sleepless circle.

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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.

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Castle

Sheriff Hutton Castle is over 850 years old and was built during the reign of King Stephen. Later Richard III acquired the castle through marriage. He made the castle one of the two sites for his Council of the North. The Council was his method of running the North after he became King of England. It has since fallen into ruin. It’s recently been sold for just over £1Million. It is our local castle.

Seven years ago we nearly bought a house which backed onto this castle. The castle was only 30 paces from the garden. An epic garden view. It was at a time when we we’re going to try for a second child. So we needed a house with an extra bedroom. This house ticked so many boxes. To me being so close to a castle seemed so exciting. However in the end we didn’t buy the house and sadly my partners health soon ruled out another member of our family. Every time I pass the castle my mind wanders off to what might have been.

There where a few reasons why we didn’t move here. One of the main reasons was our son. At that time a carefree, gregarious toddler had quickly transitioned into the world of Aspergers. Suddenly his world was populated with doctors, psychologists and other health professionals. It must have been so scary and disorientating for him. The one place he felt safe was our little bungalow on the hill. The bungalow was all things to him.

His Panic Room

His Safety Zone

His Dream World

An Exclusion Zone for the many who looked at him differently because of one word

His Play Zone

His World

It was the only place he felt comfortable and relaxed. From our experience Aspergers seemed to loosen and destroy all of our sons life foundations. Life became precarious and the slightest disturbance could bring everything crashing down. His little bungalow was one of the few things which was still secure and stable. The last thing he needed was for that to be torn down as well. So we decided to stay.

We are still here in that little bungalow on the hill. It’s still such a safety net for our son. A place he feels secure and at ease in. It still excludes those who discriminate. The garden fences mark the boundaries to his world. His ramparts. In a way it is his very own modern castle.

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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.

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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….

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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 setup – BereavedDad 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.

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Toying

Another weekend and more grim weather is heading our way. So this is the calm before the wet and windy stuff arrives. For those with good eyesight – you can just about see York Minster in the background.

So given the weather we are likely to be falling back on indoor games to amuse ourselves. Kinda looking forward to that.

School is being school. Son is still giving it one last chance. But I get the impression that his spirit is starting to ebb away. But still he has hope that he might get moved up in at least one set before he leaves. He’s done well in the exams given the lack of dyslexia support he received. A low mark in Drama but we have seen the approach they take to the subject – let’s think spellings. French he came midway which is good as he lost lots of marks for his French spellings. As he points out – ‘I’m dyslexic in multiple languages, if I can’t spell in English what chance do I have in French‘. He’s been told he did well in history which is amazing as he had to type in his answers on a computer – his fine motor difficulties makes typing slow and problematic. He came first and second in his maths papers – he lost marks as he misread some of the wordy questions. In Science he was top in his class by a clear 20 percent – a subject which probably did the best job at getting reading support in place.

So son is waiting and hoping that maybe he might get a set move up in at least Science and Maths. Hopefully in his best subject as well – History. Fingers crossed. Even if he does get the move I suspect it’s more about a confidence boost than making a long term commitment to mainstream schooling. Homeschooling will be happening just now a question of when.

I’ve been toying with dilemma. Each night son loves to play a little games competition. Mini Air Hockey, Connect 4 and Jenga. I’ve been trying to decide on another game to add to this daily schedule. Been considering many board game options. Maybe something culturally and mentally enriching. Well at 3am I pressed the purchase option on Amazon. Hopefully it arrives before the weather.

Kerplunk….