Posted on by bereavedandbeingasingleparent · 72 Comments

Captain Dumbo

Friday was a teacher training day so it’s a long weekend.

“Can you check if the cinema is empty. If it is can we go to see Captain Marvel”

For some reason the 12.15 showing only had 3 seats occupied. So off we went. Unusually for us we arrived early. Plenty of time to buy popcorn and a coffee for me. We took our seats in Screen 1. We sat on the front row – Son finds that less stressful.

We sat and waited. The adverts didn’t come on. Eventually 20 minutes late the pointless adverts about BMWs and Breakfast Cereals commenced. Then the movie trailers, Bizarrely nothing about the upcoming Avengers movie. Finally the lights go out – it’s show time. Bring on some Stan Lee magic.

Hang on a minute why is the film in double vision…

Hang on a minute why is that a Disney logo not Marvel…

The blurred film starts..

“Dad this is Dumbo”.

It was. Wrong film. We would have sat and watched the film but it was the 3D version. Looking round the other people in the cinema had glasses on. That’s forward planning….

We quickly did the walk of shame out of the screen. Passing those smirking faces – ‘look at those twits – you can’t watch 3D without special specs”. The cinema has about 12 Screens. All the screens have double doors. One to take you to the right side and one to take you to the left side of the seating area. All except Screens 1 and 2. They only have one door. I saw the sign for Screen 1 and just assumed the right door took us to our side of the screen. Wrong that was the door for Screen 2.

Is it just me. Can’t we just have a routine day. Am I just completely incompetent. Good job that you don’t need to pass a test to become a parent.

So new tickets bought for the next showing in 1 hour. A quick Burger King. New pop corn purchased – didn’t have the heart to go and retrieve the ones we left with Dumbo. And finally we sit in the right screen and watched Captain Marvel.

I suspect I’ve blown my chances of making the Avengers Team although I could make a case for taking the lead role in Dumbo 2.

Posted on by bereavedandbeingasingleparent · 78 Comments

Five Things

Its been one of those days. About 24 hours of work to be done but I only had a window of opportunity between 8.10am to 4.30pm – extra hour of school on a Thursday. On top of that I needed to clean the house, change the bedding, complete a review form, clean out the Gerbils, mend a pair of jeans, Iron, try to stop a utility firm from sending adverts addressed to my partner and pay some bills. Never going to happen.

Especially when

  • The school bus left early so we missed it. So an unexpected car journey took place,
  • Captain Chaos found a new escape route out of the garden. So a full search and recovery mission had to be launched. Once the dog was safely back in the house I had to repair a new hole in the fence,
  • The hoover drive belt snapped. Luckily I had a spare but it took a while to find it…
  • Two unplanned urgent ‘drop everything’ jobs came in,
  • I couldn’t find my bank card to pay the bills. Mad panic and frantic searching. Eventually located bank card but in the process of searching I came across my car insurance policy. It’s about to expire so needed to reinsure urgently.
  • Couple of hours later Captain Chaos escaped again. Clearly the repaired hole was not his escape route. So another search and recovery operation had to be launched,

Halfway through completing the review form and our son came back from school. The window of opportunity snaps shut for another day.

Anyway at least the Gerbils are in a clean cage now and Captain Chaos has had two new adventures.

In the UK it’s Mother’s Day soon. It’s a good time to give a shout out to all the mums out there. I struggle to cope with one day of this – you do this everyday. Thank you for being brilliant.

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Hands in your pocket

The school review meeting wasn’t a load of fun. Polite but very serious. But one thing did make me smile. The night before our son had a bit of an anxiety attack. The source of the anxiety was school rules. Son had seen two kids given punishments for walking around with hands in their trouser pockets. It’s something he can do absentmindedly.

“Dad somedays I wish I was a tree with no hands and no pockets..”

Surely this can’t be the case.

So while I was waiting for the teacher to pick me up from school reception I asked the school administrator about the rule. She confirmed that it was an automatic negative for this heinous crime.

So for the next 10 minutes I watched the constant stream of humanity walk passed reception. I observed 4 rule breakers – hands clearly in pockets. Not a care in the world. All 4 being Teachers. One rule for all I suspect not……

Posted on by bereavedandbeingasingleparent · 63 Comments

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…..
Posted on by bereavedandbeingasingleparent · 54 Comments

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

Posted on by bereavedandbeingasingleparent · 64 Comments

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.

Posted on by bereavedandbeingasingleparent · 83 Comments

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……

Posted on by bereavedandbeingasingleparent · 73 Comments

Blue Croc

Captain Chaos with his beloved blue crocodile. That poor croc needs years of therapy.

***********************

When a parent dies it is so tough it is difficult to explain the feeling. That’s a so called adult speaking. Imagine what it’s like for a young kid.

I lost my dad when I was 21. He had been ill for years. I got the feeling during the last period of his life that he was trying to keep going just to see me graduate. Sadly he missed out by a few months. It was a numbing experience but the pain was mitigated a bit as I had been expecting it to happen for ages. I was sort of prepared. My mum died a couple of years back. It was a complete shock. But a five years earlier she had suffered a massive stroke. Doctors told us to prepare for the worst. Yet in a month she was back in her house – still able to live independently. In some respects it felt like the years after the stroke were a real bonus. She got to spend time with her grandson.

But for our son we have no mitigating factors. He had just been to his beloved grannies funeral and a week later his mum goes into hospital for some routine tests. His mum deteriorated rapidly and completely unexpectedly. He was visiting his mum in the hospice two weeks later. For someone so young that’s devastating.

We still get tears but now he can talk about his mum. He can laugh at the good memories. But the anxieties caused by that period of death are still impacting his daily life. He is so worried about becoming ill and also about losing others close to him. Today is common. We have had anxiety about catching illnesses. Worries about dying. On top of that every time I sneeze or cough he runs to make sure I’m ok. We try to find ways to ease the anxieties but it is still so tough for him…..

***********************

Son comes back from school to be greeted by Captain Chaos and a well chewed croc. That’s one thing that works.