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Doll

Let’s see what we can find in our little part of this beautiful planet. Today it’s the village pond. Few will know it exists as it’s hidden well behind the church, backing onto farmland. Yes a footpath passes close by but if you stick to it then the water is hidden. To find the pond you need to venture off the path and slog your way through an overgrown and very muddy piece of land. Hard work but worth it.

Understandably today brought a catalogue of work event cancellations. Certainly the rest of March and April will be virtually workless. Probably May as well. Three months without pay really. But we are so fortunate. As a family we can just about survive until work picks up again. At least I will have a job after things stabilise. Many will not be that fortunate. My heart goes out to you if your in that position.

I can’t do anything about the lack of work. What I can do is to use the time it frees up to focus even more on our son. Like many kids he is concerned, frightened, confused… I need to use this time to try and make happy memories for him. And maybe me as well.

So lets see what we can squeeze out of this strange period in our life’s. Fun and good stuff might not necessarily be easy to find currently. But like the village pond, with a bit of hard work it must be there somewhere. We will find it and create memories.

The village pond always brings a smile. Its already a location which has helped form good memories. His old nursery had this thing about getting the kids to look after and care for various toys. One weekend our son was sent home with a doll in a beautiful white dress. He had to look after the doll, show her his home, care for her and record all this in her diary. He decided that he wanted to show the doll the village pond. We set off with him carefully cradling the doll. Unfortunately on the way our son accidentally dropped her in a cow pat. The poor doll was submerged, head first with just her legs sticking out of the smelly pile of poo. Our little four year olds son looked at the poor doll, then calmly at me and with a cheeky smile said the immortal words

“Dad what have you done….”

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Pot of gold

As a kid I remember my parents telling me about the pot of gold at the end of a rainbow. The catch was that you had to run real fast as the Leprechauns would only wait long enough to down one Guinness. I didn’t fancy my chances today. Looks like the rainbow is at least three farm fields away. That includes the field with the giant, bad tempered bull and a large stream with the missing bridge (didn’t survive the last flood). Maybe next time.

Yes I know the Apple Tree needs a good trim. In my defence the last time I tried the tree fought back. I lost and ended up in the Accident Unit with an eye ball cut. Since then our only set of ladders has fallen apart. Replacement ones have to get in line with the other essential purchases. It’s going to be a long wait. With the pesky virus likely to significantly curtail my zero based hours contract, things are going to get tighter for a few months. A pot of gold in the garden would be nice. Knowing our luck it will end up on top of the Apple Tree and we won’t be able to reach it. Who needs money anyway. No guarantee that it buys you happiness. Look at the poor Leprechauns. An eternity just protecting a pot of gold. As good as a pint of Guinness is – surely there is more to life than that.

It was such a disappointment when I found out the science of rainbows. That’s another childhood belief which turns out to be a fairy tale. A large list of shattered dreams.

  • Rainbow Pot of Gold,
  • Easter Bunny,
  • Father Christmas,
  • Fairy rings,
  • Dragons,
  • Lightning was an angry dragon,
  • Tooth fairy,
  • Magic,
  • Man in the moon.

As I grew older more and more childhood beliefs went bust. The magic and awe in life slowly ebbing away. But to quote the XFILES – I Want to Believe. So I grimly hold onto the few which are still left. Ignoring the clear science because I Want to Believe. So in my eyes the Loch Ness Monster is still a possibility. Maybe a dino living in a deep loch cavern. My head wants to myth bust yet the heart still dreams of a Scottish Dragon.

The loss of magic and awe is a bummer. It’s a bummer for our son as well. I remember that dreaded Santa chat with the floods of tears. My tears as well. I remember the sadness of life unpicking childhood beliefs. I can see the same pain in our son. With his Aspergers traits he latches strongly onto these myths. They bring much needed warmth and magic to this cold, unforgiving alien world. I’ve told him that it’s always his choice what he believes or doesn’t believe in. Christmas now is not seen in terms of the magic of Santa but in the magic of Christmas. Some will say it’s bad parenting not to immediately disprove these fables. My take is life can be unremittingly grim, a little bit of hope, a sprinkle of magic can lift the heart. It’s good to dream. It’s lifts the heart and feeds the imagination. And just maybe brings a pot of gold.

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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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Cake test

This was my attempt at baking son’s birthday cake. It’s amazing what heaps of icing can hide. The cake was a bit over baked with a huge volcano like hole at its centre. I plugged the hole with soft sweets and then covered with thick icing. What was left of the sweet packet was scattered on top. I might be onto something here. The soft sweet centre worked brilliantly. As a result the cake was deemed “not too bad at all” which on our sons review scheme equates to just above two Michelin stars. So now that’s got me thinking what other things can I fill the inevitable cake sunken holes with. I’m going for jelly in the next one. I will report back on my test.

On the subject of tests …. ok troops, time to stand by up your beds. Its spelling test time.

School is slipping as we have had only one spelling test this week. So they better make it a doozy.

Imagery

Alliteration

Rhyming

Couplets

Syllables

Stanza

Rhythm

Sonnet

Simile

Metaphor

Hyperbole

Assonance

Personification

Onomatopoeia

Enjambement

Another cracking list of words that will be of great use in son’s future life. My last conversation with school stressed the point

That spelling tests for dyslexic students are not recommended practice. If they have to be used then they should only focus on the most commonly used words.

Good to see the school are sticking to the common words then. I had to look up Enjambement. I was sadly disappointed to find that it wasn’t a Caribbean Cooking term for combining Jackfruit with Jamba Juice. My favourite flying dinosaur (Onomatopoeia) makes a welcome return. Last time I pulled that joke I had a shedload of abuse from my Texan fan club….. For some reason Son can’t say ASSonance without cracking up. Must get to the bottom of that joke.

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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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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….

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Late nights

Over the school break we were seeing what we could find with our very old telescope. With a bit of patience we got a photo of a distant power station. Took a steady hand and many out of focus disasters. I guess a lot of patience.

When I’m tired my brain has a habit of going into neutral. That’s fine if your sitting or lying down but try to do anything else and your asking for trouble. Last night at around 4am I was watching Black Panther. I decided my body needed a hot drink. So I make a fine cup of Yorkshire Tea. (That’s the tea which has got the new Chancellor of the Exchequer personal seal of approval).

The photo is from Chancellors own twitter feed.

Anyway my late night Yorkshire Tea was made. Unfortunately as I sat down to watch the movie again I realised that I hadn’t brought my cup with me. I was holding the kettle instead.

A couple of weeks back it was even more painful. I was watching a late night movie and I went for a midway toilet pit stop. On my way to the bathroom I completely missed the open door and walked into a wall.

It’s been even worse that that. About a month ago I was struggling with a leg muscle strain. During yet another late night movie the muscle started playing up. So I decided to apply some Ralgex (Heat Rub). A fine idea but in my zombie state I must have forgot to immediately wash my hands. Unfortunately I rubbed my eye and then with spectacular bad timing I decided to go for a wee. Within a few minutes my eye and my undercarriage were basically on fire. Now that woke me up.

But occasionally the late nights can yield moments of clarity. This happened last night towards the end of Black Panther. I had been spending so much time worrying about the future. All the pitfalls of homeschooling. Everything that could go wrong. How I was missing my partner and her advice. Then it struck me. The one thing I had missed was the opportunities. Homeschooling allows you freedom to design your own days. That puts US in charge. That is such an exciting and liberating prospect. And I missed it.

It’s so easy to focus on the negatives. There is an awful lot to be worried about in life. Yet it still can be a wonderful life. If you let it and have patience. So I need to find a balance. If I’m going to think about the negatives then I owe it to myself to think about the positives as well.

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Sod’s law

Don’t you just hate Sods Law (Murphy’s Law). Son has been desperate for some snow to have a sledging session. This season has been a complete right off so far. He’s just had a week off from school where it has basically been storm force winds or torrential rain. Not a sniff of the white stuff. So guess what. On the first morning back at school we wake to this.

And by the time he got back from school the snow has been replaced with rain and high winds again. All the white stuff has gone. He is so so sad. It’s not as if school was in any way enriching. It started with any kids arriving late still receiving negatives – no allowance for the awful roads and paths. Welcome back kids to this happy establishment. First day back and homework is being handed out like confetti at a wedding. Long lunch queues and over running lessons meant no hot food for his class. AND THEN we come to Drama.

The school is clearly desperate to produce the next Laurence Olivier. It’s chosen route. Spelling Tests.

So here goes my friends, your first spelling test of the term. Enjoy.

Grendel

Marking the moment

Proxemics

Thought track

Status

Narration

Levels

Themes

And I’ve saved the best till last

Beowulf

Heorot

Uniferth

King Hrothgar

Dane folklore spellings – what a top idea. So school has started off again being exactly the same grim, oppressive institution. It’s never going to change under this Government and it’s Victorian approach to education. I’ve again given him the option to be homeschooled and again he has reluctantly declined. He still wants to see if he gets moved up in any of his classes. But I must admit another school snow day may just push him over the edge. And I really couldn’t blame him.