Let’s break some rules….

Our school like so many others prides itself on discipline and the behaviour of its pupils. This is achieved with an inflexible set of rules. If a pupil breaks a rule then it’s an automatic negative. Four negatives in one week means detention. Repeated detentions bring the sanction of isolation. A serious negative can lead to an immediate spell of isolation. It’s all a bit Dickensian – was going to say Shawshank Redemption but that’s probably not a good example to use really…

The rules must come in about 7 volumes so too many to list. But let’s give a flavour by quoting some of the negatives which our son has seen issued.

  • Unbuttoned shirt
  • Incorrect positioning of the tie
  • Throwing a snowball – after school and not on school premise
  • Small coloured markings on white sport socks
  • Parent not signing off the weekly planner sheet
  • Forgetting your planner or text book
  • Incorrect colour pen used. Has to be black, unless it’s a correction which has to be green – still haven’t worked out what blue is supposed to be for
  • Forgetting to bring your cooking apron
  • Bringing the wrong measurement of food ingredients
  • School iPad running out of battery
  • Carrying snacks in a rucksack
  • Going to the wrong lesson if you misread the timetable
  • Getting lost in the school – it is a big school area with several separate buildings
  • Bringing the wrong type of calculator
  • Repeatedly asking to go home if you are unwell
  • Pointing out that the teacher had got a fact wrong (son’s only negative so far)

And on and on

Our son came home yesterday to say that he had to complete a series of corrections in his book. Failure to do so would result in two negatives…. When I checked he had one answer correction to make – fine. But he also had to correct spellings. As you can imagine with dyslexia he had many. We had the dreaded red “spelling mistake” label on almost every line. I gave up counting at 30.

The school has another rule which says that for every spelling mistake the pupil has to write out the correct spelling three times.

Call me awkward but he’s got dyslexia. How can this be right. I have spoken to the school on several occasions but I am told it is the rule for all pupils. Well bugger it. I have emailed school to tell them that he is not doing the corrections. We will add the words he has struggled with to our home reading work. But he is definitely not writing out the corrections three times. If he gets a negative for this then I have warned them that I will consider legal action against the school. U.K. organisations need to take reasonable steps to avoid discrimination on the grounds of disability. Under the Equality Act Dyslexia is classed as a disability. OR the school could just give me the detention – that could be really interesting (unbelievably I have never suffered that punishment).

Which mountain?

It’s just over 2 years since we lost her. It doesn’t feel like 2 years. It still just seems like last month..

This photograph was taken on our last family holiday. It’s the view from the hotel. The view brings back so many happy memories. But it’s a sobering thought that the next time I see this view for real it will be on a trip to scatter her ashes. That wasn’t in the script…..

I feel a bit like Dr Strange in the last Avengers movie. Scanning all the possible life outcomes and probably only seeing one which involved ashes within such a short time span. Unfortunately that one came to fruition.

On that last holiday we spoke briefly about if something happened where she wanted to be laid to rest. I never paid too much attention to it. Surely that life option isn’t going to happen for many years – I would make a really crap Dr Strange. But now we have a bit of a problem. Can I remember the preferred sites. Two in the UK are reasonably simple and straightforward. The two in Switzerland ……

One is easy as it’s an instantly recognisable location, we have been to it several times before. The other location is a tad more problematic. She wanted to be scattered at the same location as her beloved Dad. It’s at the top of a mountain I have never been to. Assuming I have remembered the right mountain, Switzerland are not short of one or two. Then I can vaguely remember the instructions. Get the cable car to the top. Start the path down and it’s next to a bench near a small pile of stones. Unfortunately looking at the internet the mountain has at least 8 paths and I’ve counted at least 20 benches. As our son helpfully points out – you will know if you have picked the wrong mountain or wrong bench when that bolt of lightning strikes. No pressure then….

Two years ago this genuinely caused me huge anxiety and anguish. Now I can see the funny side. That’s progress.

Important note. Trying to arrange taking ashes abroad from the U.K. is a nightmare especially if you are planning to fly. You need to arrange a specific flight time with the airline. Then get the undertaker to securely package the ashes and complete the required cover note which has to include the flight details. The airlines I spoke to made the process so difficult. Also straight after the cremation the last thing you want to sort out is air flights. Fortunately the Eurostar train option is so much friendly. They told us to get the ashes securely packaged. Then book as normal when you are ready – just pre warn security when they check your bags. It’s another train journey for my partner then – she loved trains.

When dreams fade

The pre Valentine onslaught is in full swing. One advert claiming to have the perfect gift for my partner, every base covered….. Really – every base?

I’ve always been a daydreamer. As a child dreams of football, cricket, astronauts and mountains dominated. They gave hope. The years went by and still I dreamed. Dreams of happiness and a successful career. Then I met my partner and the dreams changed. Suddenly dreams focused on starting a family. Then our son was born and dreams shifted to happy family life. Few years further passed and it became more likely no more children would arrive – again my dreams shifted. Now they were dominated by images of us happily growing old together. Walking hand in hand. Sat together in Parisian cafes. Sharing new experiences in new lands. Dreams and hopes intertwined. Then the world suddenly changed….

Now I live in the moment, just focused on the practicalities of the day. When I daydream now (very rare) these are entirely focused on our son. Dreams involving me have gone. When I look – nothing. They died with my partner. No happy thoughts of growing older. Just the deepest blackness. I have heard this phrase used before. Living our lives through our children. It is so true. One role.

One day I do hope my daydreams return. Some things don’t change. I am still a daydreamer at heart.

Put in my place

The directness and purity of autistic children is a blessing. It certainly puts you in your place….

I told a really bad joke and got no reaction. So I told it again but this time started to explain it.

“Dad just stop. You don’t need to repeat it. The greatest artists and musicians never copied their masterpieces, they moved on to new ideas. Never repeated themselves.”

After a few seconds of silence

“Dad in no way am I saying you are a great artist or musician. The phrase can apply to others as well”

Made up

Today I was thinking about how nice it would be to have some colour in the garden again. I tried to picture some flowers. The flowers I could see in my mind were last years plants. Couldn’t imagine any new flowers.

Our son’s school does ask the kids to do an awful lot of homework. Too much really. One of his assignments was to start putting together his autobiography. Red flag alert. This is a recipe to just reopen old wounds. Son was equally apprehensive. So I contacted school and expressed my concerns. We agreed that rather his own biography he would come up with a fictional one. As his hand is still not fixed I was going to scribe his thoughts.

“Ok I am in my 70s”

“I was born in the South of England”

Good start.

I like music”

“My best friend is called Keith and he also likes music”

“I have another friend called David who I often share clothes with”

Not sure where this is going.

“I joined a band with my friend Keith”

“We played our first concert in 1962”

This sounds a bit like Mick Jagger.

“Well it is Jagger”

No you can’t use him, it’s supposed to be made up.

“Oh, Ok.”

“I am middle aged and I am a lecturer”

This sounds more like it.

“My father is very religious”

“I am an archaeologist”

“I’m scared of snakes and I am also an adventurer”

By any chance does he go looking for the Holy Grail.

“Yes, how did you know?”

Because its Indiana Jones. You can’t use him.

“Why he’s made up”

You just can’t use him, make one up about a child not a famous adventurer.

“Alright can I be an 8 year old boy”

Yes much better

“I am a bit cheeky”

“I live with a large family with many kids. I have a really annoying older brother and uncle”

“I am always getting shouted at”

This will make an excellent biography.

“Every Christmas my family go on holiday but they always forget me, so I am home alone”

Deep sigh…. Fine you win, you can be Kevin….

Cheesy Music.

I came across this story this morning

https://consequenceofsound.net/2019/02/rock-and-roll-themed-cheeses/

Aldi is going to sell some limited edition music themed cheeses.

Sweet Cheddar of Mine – Guns N’ Roses

Pour some Gouda on me – Def Leppard

Wake me up before you Goat Goat – Wham

Thank you Aldi I should be focusing on a payroll spreadsheet and now all I can see is cheesy song titles.

Let it Brie

Go your own whey

For whom the baby bell tolls

I Stilton haven’t found what I’m looking for

Brie quick or Brie dead

Smoked Gouda on the Water

American Cheese Pie

Abbots Gold Rush

Another ADL Brick Cheese in the Wall

Jumping Chilli Jack Flash

Chocolate Stout Cheddar Symphony

Halloumi of the Mountain King

The healing properties of Thunder

Attending a rock concert is always guaranteed to lift our spirits. Last night due to a bit of rubbish ticket booking from Dad we were due to see Ozzy in Newcastle and Thunder in York. An unfortunate case of OzzyFlu sorted out the clash. So off we went on a wet cold night to see Thunder and Dan Reed. We bravely faced the infamous York car parks and the massed hordes of relentless parking enforcement officers.

We both needed a lift and yet again rock delivered. It was different. Rather than crashing guitars we had an unplugged acoustic night. The wonderful Dan Reed and the epic legends, Thunder. Both brilliant. York Barbican is one of the few rock venues where they still come round offering mini ice cream tubs. Something rather decadent about sitting at a rock concert eating strawberry ice cream.

You are always learning and last night was no exception. Dan Reed played a tribute to Ronnie James Doo. He played Dio’s old classic, Holy Diver. I had always thought Holy Diver referred to a fictional decent into Hell. But Dan came up with another narrative. His take was that a Holy Diver is someone who goes on a quest around the world. The quest takes so long and takes on so many different pathways that on their return they have forgotten the original defining purpose of the quest. Sadly this seems to happen to often…….

What works

Anxiety, sadness and fear. Three words which unfortunately are too often near the top of our household vocabulary. Along with fart, burnt food, turn the music UP, where’s the remote, sorry I forgot and Dad you Muppet.So what have we found that actually works for both of us. Here are some of the winners.

5,4,3,2,1

We have found that this technique is really good at taking the edge off panic attacks. It doesn’t work on any underlying problems but buys some time. At the first sign of increased anxiety:

Think of 5 things you can currently see,

Think of 4 things you can currently hear,

Think of 3 things you can currently touch,

Think of 2 things you can currently smell,

Now do 1 large breath.

The Sweetie Jar Oracle

If our son is going through a period viewing the world through unhappy filters we start the Sweetie Jar Oracle. Find a large clear jar and a bag of brightly coloured sweets. Not sure about the rest of the world but in the U.K. smarties, fruit pastilles or Skittles work well. Sort out say the red and yellow sweets. Then identify one of the colours as good and the other as bad. Then over a period of a few days, maybe a week start to fill the jar with the appropriate coloured sweet every time a good or bad thing happens. After a few days hopefully you will see more good sweets than bad sweets. This usually convinces our son that although bad things do happen, good stuff happens more frequently. You can then eat the sweets….

Good Memories Store

We have an old small suitcase which we use to store good memories in. It’s full of old photos and handwritten notes. Every time we remember a good memory I write it down and put in in the suitcase. When times are bad we can then dig out the memory store and hopefully receive an instant boost to the soul. Has the added advantage of making sure you don’t forget those all important wonderful moments in time.

YouTube

Just losing himself in a YouTube documentary works somedays. I remember one occasion when he had an awful day at school but after 45 minutes of YouTube watching he was a happy little bunny. Worryingly he had found solace in documentaries about Caligula. What happened to Peppa Pig…

Wheelbarrow Train of Pain

Talked about this in a previous post. It stops my sudden urge to punch the wall with frustration. Basically load up a wheelbarrow with heavy stuff then push it round the garden. The number of circuits depends on the severity of the frustration.

Lego

Found that building a Lego set really helps take our son’s mind off his anxieties. It’s also good for his fine motor skills. It’s often frustrating for me as it just reminds me that I never got round to buying the Star Wars Death Star Lego set. Now it would be cheaper to buy a real Ghostbusters Proton Pack and get Bill Murray to personally deliver it to us.

Trampoline

Almost everyday on his return from school our son heads for his trampoline. 20 minutes later many of the frustrations of the day are put to the back of his mind.

Late night dog walking

Walking the dog never really helped our son. He was often too concerned about bumping into others. We would be having a happy conversation but suddenly someone would appear on his radar and he would be lost to anxious social thoughts. Almost by chance we then found the delights of night time dog walking. At night no one is about in our village. We have the fields and lanes to ourselves. Now it has become an excellent stress reliever. We frequently use the walks to plan out in detail the next days schedule.

Bad things league table

Every so often we run the bad things league table. We both list all the things worrying us. We then work together to rank them in order of how much pain they are causing us. Points are awarded for the severity of the issue, it’s frequency and how difficult it is to solve. It quickly identifies the stuff we need to focus on or prepare for. Because it’s done as a league table our son finds it easy to talk about and work with. For the issue which is the league winner we then spend a few minutes working out a couple of actions which might help knock it off its top spot for the next league table.

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One of the activists 100% guaranteed to raise our spirits will feature in the next post…

Bereavement and Aspergers

Death is inevitable but so so tough to comprehend. It’s hard for a grizzly mile worn traveller like myself to cope with, what on earth is it like for someone so young. Especially when it’s now 5 major deaths in 4 years. He’s only 11.

My son living with his Aspergers finds comfort in routine and orderly plans. Bereavement doesn’t fit into this ordered and planned world. Suddenly the world shifts, things are never the same again. This complete paradigm shift seems to manifest itself as shutdowns in his processing skills. His fine tuned memory becomes vague and unreliable. Concepts and principles become just random jumbled images. Simple tasks become complex nightmares. All he can think about is that the world and his happiness will never be the same again. Completely lost in this alien world.

Another aspect of Bereavement is a sensory one. Our son constantly fights to control and deal with all the sensory inputs flooding his body every second, every minute, every day ….. hardly ever receding. He has talked about death ramping all these sensory inputs up several levels. Suddenly the noise in his head is louder, he can feel the heart pounding, his skin is oh so much more sensitive, the unsettled stomach becomes a whirling vortex. He is trying to understand death while coping with this sensory storm.

When Bereavement occurs so many worries resurface for our son:

  • Fear of his own mortality. Suddenly every cold, every encounter with an unclean surface, every bump, every cough is a potential path to death.
  • Fear of his Dads mortality. No backstop, no second parent. Images of sad kids in cold foster homes like Harry Potter or strict Victorian orphanages flood his mind. How many movies have this as it’s premise.
  • Fear about losing special loves he will encounter in the future. Is the safest option to just shut the world out.
  • Bad things keep happening so they must be the norm in life.
  • Is it me. Am I to blame for this.
  • I just can’t find order and rationalise things anymore.
  • You learn to love, you learn to trust, then it is gone.

I think that final fear underpins everything. Trust in life for our son is hard to establish. He works so hard to build those bridges. Death smashes those bridges, breaks his hard fought trust.

We have started the healing process. Recommenced all the stuff which has helped in the past. But each time it happens the path to recovery becomes longer and more difficult.

The irony here is that this post is about our son (my only focus) and yet those last two lines (without thinking) are probably about me.

We now try to move on. The motto we have adopted is ‘each morning we dust ourselves down and go again’. Next post I will talk about some of the stuff which helps our son. More uplifting. More humorous. It has to be that way.