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Sneaky Grief

Grief sneaks up on you. It often doesn’t attack head on – when you can brace yourself for impact. The big hits are the attacks from behind – the ones you don’t see coming. That song on the radio, an unexpected find, a hidden photograph, a surprise film scene.

In the U.K. Mothers Day is fast approaching. It’s not an easy day to get through but it’s no surprise. You have weeks to prepare. It won’t be fun but I guess it won’t be a complete meltdown. I suspect I will blog further on this again.

Taking the dog for a walk in the local Arboretum. It’s a lovely relaxing place. I was using the walk to get my head round a work problem. The mad dog was happy – a dog and an Arboretum full of thousands of trees …. Pup Heaven.

So I was in autopilot. Just following Captain Chaos from tree to tree. Starting to form a viable fix to the work problem. Then I stopped dead in my tracks. A sudden realisation of location. A sudden sinking heart. Suddenly hit by a sneaky grief attack.

In autopilot mode I had drifted into one particularly beautiful area. During autumn a place glowing with silver leaves. A place my partner would repeatedly visit. I can see her face smiling at the view. A place where she wants part of her ashes scattered. A flood of tears and complete despair. I feel very old and so very alone.

But thankfully for my sanity I have designated role. Our Son needs me. He deserves the best childhood possible. So I let the dog pull me away from the area to a particularly exciting unmarked giant Tree.

Put away the tissue. Breathe. Refocus. That wave of grief has passed but I know that the tide will return.

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Those pesky Vikings

Living with anxiety is the real deal for so many people and kids.

“DAD, DAD I am getting really anxious, sorry its the middle of the night”

Anxiety seems inexplicably linked with Autism. We are so used to these panic attacks. They can happen at any stage.

“This one is a daft one. A really daft one. But I am panicking”

Son there are no daft ones. Whatever the cause – panic attacks are awful. We call it the anxiety vortex. When they take hold they just keep gaining strength – making rational thought almost impossible.

“It sillier than the school history one”

At school the teacher was talking about the Middle Ages. The Black Death came up. The whole thing unsettled our son. Given what he has been through Death haunts his soul. When he did some research he found that the cause is still not agreed upon but it could be bubonic plague. Bubonic plague still kills today. The anxiety vortex took hold. It took a couple of days of hard work to bring it under control. We are still trying to extinguish that one…

“Dad when I went to the York Dungeons. Well it was fun and kinda scary. Well one room scared me. It was the vikings. The models looked awful as if they had the plague, the room smelled of death. All I can think about is Ghost Vikings. Ghost Vikings coming to get us. I know it sounds daft but it’s starting to unleash a lot of other vortexes.”

So during the night we talked about Ghost Vikings. We talked about a lot of things. Stuff like that today football is super popular in Scandinavia – if Viking ghosts did come back they are more likely to want to play football than go on a violent pillage. Stuff like given the astronomical price of Alcohol in Norway the ghosts would just be heading straight for our pubs and our village doesn’t have a bar….

This one was a relatively easy vortex to tame. Yes we could easily debunk it. But Anxiety and fears are so very real. Many cannot be tamed. Many more are still to be unearthed. If you are suffering I send you my love. It is so so tough.

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Trees

What a stunning tree.

We took Captain Chaos for a walk this morning. Still trying to process yesterday’s school review meeting. Maybe it’s because I am tired but I just can’t get my head fully round it’s implications. It’s times like this when being a single parent sucks… No one to talk things through with. No voice of reason. So the ideas and words just keep swirling around.

I turned up carrying my 300 pages of notes (sorry Trees…). When I opened the paper pile a must do House DIY list dropped out. Sadly nothing can be ticked off the list from the last meeting. Where does all the time go.

The meeting lasted two hours. So many discussions. So many disagreements. So much frustration.

I suspect the best way to summarise is to see a never ending circle.

I ask for something. School confirm it’s not happened. Health Service says the need is real and should be met. School says they don’t have the resources to do this. School asks the Council for funds. Council says it’s not an education issue, it’s a health issue. Health Service says they don’t have the money and it’s an education issue. And on and on. If we give money to health to provide additional support then that has to come from the school and they then can’t even meet his minimum care standards. So Son has real unmet needs – everyone agrees on that but no one is prepared to provide the funds. Everybody at the meeting clearly cared about our son. Let’s be honest Health and Education have been hammered by our current Government. You can only cut things so far before things start falling apart.

Let’s quote our Prime Minister again

“I’m on your side….”

Just sod off. You are not on OUR SIDE. You are just looking after yourself. You don’t give a damm about kids like our son. Get back to looking at your, your husband and your friends off shore investments….

So the bottom line is Health are going to write to the Council and request additional funding. Council are going to write to the Health Managers and ask for additional funds. While our PM sits in Chequers and tries to find more desperate ways of staying in power. Go on May why don’t you bribe the DUP with billions of pounds of public funds again – while lecturing the rest of us that ‘money doesn’t grow on trees’. Madness.

More positively school are going to try some minor adjustments to see if that helps our son. They are also going to formally request exceptional one-off funding to pay for an in-depth dyslexia assessment. The funding probably won’t come but at least school now recognise the impact dyslexia is having on our son’s educational performance.

So hopefully at the next meeting we will have seen some progress and at the very least confirming that

  • Son has started getting some more tailored support,
  • I have started doing some of the DIY projects which are badly needed,
  • I will have gone paperless so more beautiful trees will be saved AND
  • our incompetent and distinctly unpleasant PM is consigned to historical ignominy…..
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Decibels

Currently the mad dog is being completely bonkers. It’s a kinda let’s bark at everything type of day. Currently the apple tree is getting it. But as the decibels rise my mind wanders to that quiet little pup. What happened…..

Son is not impressed. If you look closely at the photo you will notice that the duvet cover is Peppa Pig themed. It’s a perfectly good cover so is still used today when his Jurassic Park one is being washed. Son doesn’t really see the practical benefits.

“You do know Peppa Pig is for little kids. It’s not as if I’m watching it. I know you do when you get the chance, but not me. I was watching about the Black Death last night..”

I do have to admit that a quick bit of Peppa Pig, or the Clangers or In The Night Garden is strangely therapeutic. And yes I can’t remember the Peppa Pig episode which featured the Black Death.

All my parenting waffles are subject to a major caveat. As statisticians would say – it’s based on a very limited sample size. Like one child. One child on the autistic spectrum with dyslexia. So when I see something I can’t be sure if that is just particular to our son or is a common thing. The only other benchmark I can use is my childhood. That seems a long time ago…..

Son has a lot of areas where he is more developed and refined than his Dad. Seemingly way beyond his years. But also in a number of areas he probably still reverts back to the Peppa Pig years. Cuddly toys. Not wanting to leave the safety of the family nest. Mr Men stories. Petting Zoos. Toy cars….

Maybe it’s a fear of growing up.

But I can relate to this. Not wanting to completely forget your early childhood days. Now where is that Peppa Pig dvd….

Speaking about not forgetting things.

It’s the Great Bloggers Bake-Off this Sunday. It’s all about having a bit of fun. Pop over to Mel’s blog – Crushed Caramel (Learner at Love). She has done so much work to set this up.

Our special judge is A Jeanne in the Kitchen.

Let’s go Sunday Spongecake mad.

Please send photos of your creation(s) to crushedcaramel@gmail.com

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Need a direction pointer

My old laptop is happily grinding away on a job which modern kit will do seemingly in an instant. However my laptop as it’s powered by several knackered small pixies is much less efficient. So time to do a post. But which thread to go down, quite a few to pick.

Then an idea.

Last night talking to son about chance and the story of the person who lived life by the toss of a coin. As son said “a poor copy of Two Faced Harvey from Batman”. So why don’t I let chance decide. But too many options for a coin. What else can I find which is random. Alexa.

Asking the ever helpful Alexa straight up to choose for me failed. Then another idea. When I ask her to select a track from from music library ….. that’s random. So the idea firmed up. I will ask Alexa to play a song and I can use song lyrics to guide today’s post. If it’s an instrumental than I will just post a photo no words. If it’s a French or German or Italian or Spanish language lesson then I will have to post in that language.

On the surface it’s a brilliant idea. Even if I don’t have an idea some of the artists will send floods of creativity coming my way. Imagine the possibilities opened by some of the lyrics by artists like Pink Floyd, The Who, Leonard Cohen, Rush, Bruce Springsteen, Genesis, Kate Bush…

But in life you need balance. So for every Robert Plant or Green Day you need a Ted Nugent to bring balance. Then my thoughts cascades to some of the less favourable lines I might be presented with.

“Only time will tell if we will stand the test of time” – Van Halen

“This sex is on fire” – The Killers

“Let me put my love into you Babe” – AC/DC

“You pull the trigger of my love gun” – Kiss

“Pink ’cause your so very” – Aerosmith

“Love is like a bomb, baby, c’mon get it on” – Def Leppard

“Bang you head against the stage like you never have before” – Metallica

“All right. It’s Zee Wango, Zee Tango” – Ted Nugent

“Kiss my ass” – Ted Nugent

“I let my dog hump on my shin” – Ted Nugent

“Wang Dang Sweet Poontang” – Ted again….

“Awwwww yup” – him again

“That tofu might just kill you” – and again him….

I have to admit even the greats have some odd moments with songs. See AC/DC. But also see the likes of Zeppelin with the Lemon Song. So with trepidation I ask Alexa to select.

But I’ve taken this long waffling my laptop has finished its task so need to get back to earning some money. So the

Next post will be based on this song ……

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Martians just made the list…

Sometimes you just have to get up close to flowers. Neighbours must think I am stark raving mad….

Sometimes you have those days. Days were you get up close to flowers and also end up pulling out what’s left of your hair.

School has been verbally told (many times) and been provided with extensive case notes for our son. Just in case school didn’t fancy reading War and Peace I helpfully provided a two page bullet point summary. Bullet Point 6 said

Can have poor judgement in relation to risk.

Bullet Point 7 adds

Has a diagnosis of Dyspraxia. Has very poor fine motor skills. Struggles to use pens. One to one Care and supervision needed when using sharp objects.

Under the section relating to specific school subjects

Design & Technology. One to one supervision required when using cutting tools, drilling tools and impact tools.

Additionally school has been given a verbal and written update on his current broken hand. Although the bone has heeled he is undertaking physio to try and get his hand working properly again. So he in effect still just using his weaker left hand.

Today was his first Design and Technology lesson. So it was also a fingers crossed type day. Funnily enough it was also a plaster type day……

He came back home. His thumb and two fingers covered in large plasters.

“Dad I had a bit of an accident. I was trying to saw using my left hand. The teacher shouted out an instruction to the class. I got distracted and I started sawing my hand rather than the wood…”

Apparently he wasn’t given any one on one supervision. He was allowed to use a normal saw with his wrong hand, with no additional safety measures in place. – Maybe I’m just being an over protective parent. It’s a natural thing to do.

“Dad funny thing is the lesson was about safety in the workplace. Guess I’ve already failed…”

So that’s something else we will be discussing at his school review meeting on Friday. Could be a long meeting because it’s one sizeable issues list….

But let’s try to finish on a brighter note. We sat on the grass next to the daffodil patch with ice lollies in hand.

“Dad up close Daffodils take on a completely different perspective. If your a bug looking up at those yellow giants, it must be terrifying. Do you think HG Wells got his idea for the mechanical Martians from Daffodils”

As I pondered that the mad dog ran up and before we could stop him, he cocked his leg on the Daffodils. Poor bugs scared to death by Yellow Martian Giants and now doused in Acid Rain. I wonder if an overprotective parent bug may have just added an item to a miniature and a tad damp issue lists. We can wonder.

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This funny book is going to make me cry…

Every Christmas my mum would always check to see if Terry Pratchett had a new book out. It was always her go to present for me. It became a tradition. Looking back she bought me every book in the series since the first one came out in 1985. I have read all of his books except the last one. He is without doubt my favourite author. Funny, clever, inspirational and with a boundless imagination. The last book was written as his Alzheimer’s took hold. He wasn’t able to finish the planned final scene as his heath rapidly deteriorated.

Sadly both my mum and Terry have now left us.

I miss those Christmas evenings. Sat by the fire. The new Pratchett book in one hand and a box of miniature Cadbury chocolate bars in the other (mums second go to present).

After mum left us I had one final discworld novel to read. But I just couldn’t bring myself to do it. It just didn’t seem right. The tradition was broken. I think part of me also realised that it would be a deeply emotional process as well. Memories of two stunningly beautiful people flooding the pages of the final novel.

But now the we have crossed the line. The Shepherds Crown has arrived by post. The 41st and final discworld novel. Tonight I will start this cathartic experience. It won’t be easy but as it’s a Pratchett novel, it will also be brilliantly funny. The mini chocolate bars will be replaced with copious amounts of black coffee. I don’t think I am ever going to have such a book reading experience again – it feels like a once in a lifetime event.

The process has started I read the first couple of lines. Even those brought a tear to my eye. This one is for you Mum and Terry.

“It was born in the darkness of the Circle Sea; at first just a soft floating thing, washed back and forth by tide after tide. It grew a shell , but in its rolling tumbling world there were huge creatures which could have cracked it open in an instant.”

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The Black Hole…

I could look at these flowers all day. Stunning yellows with one sneaky violet crashing the daffodil party.

The school bus was late. Very late. Our son went into meltdown. Panic attacks over detentions, expulsions and all the associated ever increasing butterfly effects. All today’s carefully constructed plans are in tatters. It’s part and parcel of being a child with autism. We now have a plan for this type of eventuality. A hand written plan we keep safely by the front door. When I say plan it’s actually an old food shopping list. The plan Z list was pulled from the wall.

Tell me 5 things you can see.

Tell me 4 things you can hear.

Tell me 3 things you can touch.

Tell me 2 things you can smell.

Smile once and breathe.

Plan now says Dad get the car keys and drives you to school.

Thankfully today Plan Z worked. Distraction and switching to another orderly plan. It’s funny as a shopping list it was poor (I remember it missed off non essential stuff like bread, milk, pet food…. but as a go to plan in times of crisis – it has been a winner. It’s so flexible the actual words on the paper are irrelevant. It adds credibility to any plan I come up with in an emergency. Because that plan must be good as it’s the plan on that piece of paper – it’s Plan Z. As we reached the school gates order was starting to be restored in his soul. He made me smile with some of his responses.

“I can see bird poo on your car. I think it must have been a big bird.”

“I can see a couple of blue flowers in the Daffodil patch. Maybe they are mutations. Definitely beautiful mutations. Flowers are very welcoming.”

“Dad I can still see that cake you made yesterday. It was so funny how you got it to collapse in the middle. After all these years and still it messes up. The cake was so like a black hole. It was both a thing of wonder and a piece of terror. It’s a special talent Dad.”

As the great Terry Pratchett once said “Wisdom comes from experience. Experience is often a result of lack of wisdom“.

So yes my sneaky practice run for this Sunday’s GREAT BLOGGERS BAKE-OFF didn’t go so well.

Hopefully you will join in the fun on the 24th.

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Embrace the stain….

Picking up from this mornings post. Spiez is just a perfect place. The building at the front of the picture is the hotel we would stay at. The mountain dominating at the back is the Niederhorn. Before our son was born I was practicing for a mountain race. As part of the training I managed to run up this beautiful mountain. I remember lying at the top ignoring the stunning view – just thinking do I run back down or call for a helicopter evacuation…

I recount this story as it came to me again this afternoon. Setting a goal, achieving it then rather than basking in the success you immediately worry about the next step or challenge.

This feels a bit like fighting the system for our son. So many peaks to climb. You climb one but you then immediately have to face a new climb. It can be soul destroying.

We have potentially found a specialist who will assess our son’s dyslexia. But now I need to find the money to pay for it (the leaking washing machine will have to survive another year before it’s replaced). AND I somehow need to find a way of getting the education system to adopt the recommendations of the assessment. I was speaking to another parent who has been trying unsuccessfully for two years to get her school to adopt the same specialists recommendations. Why do we make it so difficult for our kids…

You then see the news which is dominated by talk of Brexit. Our so called Prime Minister is trying to bribe another party with up to a billion pounds of further funding if they will vote for her shambles of a plan. And yet they can’t find the money to adequately fund our schools or mental health support services. She takes great delight in telling the rest of us that money doesn’t grow on a tree. Clearly our Leader values her own career and legacy higher than the kids of our country…… Sadly she is not the only world leader like that.

Then my mind drifts back to that mountain. The Niederhorn. I didn’t ‘get into the chopper’ in an Austrian accent but decided to run down. It was an interesting decent. As some breathless pillock had collapsed at the top into a fresh pile of some unknown and clearly legendary bird droppings. Running while trying to prevent passerby’s getting a good view of the your oddly coloured rear is just embarrassing. Rather than embracing the stain I just tried to run as quickly as possible while keeping my bum always pointing away from people. I can hear my dad saying ‘son as quick as you run you won’t increase the separation between your shorts and that stain’. Maybe that’s a really good analogy for state of our governments overall strategy……

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Happy Days – Spiez

Looking out at the rain and the trees bending in the wind. It’s all just a bit too grey. Sometimes you soul needs more. For us that was a holiday in Switzerland. We probably couldn’t afford it but was it worth it – you bet.

We always used the small town of Spiez as our base. A stunning and friendly place sitting by the banks of Lake Thun. A transport fanatics dream. On one side you can take the regular boat service (sometimes an old steamer) to explore the lake from Thun to Interlaken. On the other side a brilliant train station offering precision perfect links to the rest of Switzerland, Germany and Milan.

After a hours of exploring we always ended the day with a walk up through the vineyards to a small hill top with stunning views across the lake to the Alps.

Memories and views like that are worth so much more than money. It’s why my beloved partner indicated that she wanted some of her ashes scattering here. A perfect choice. One day hopefully I will do the same. So our souls can wander here forever…..