Searching in the dark

Just after my partner died I remember reading a book which suggested that grief was like a black hole. All consuming yet over time it’s energy shrinks and eventually it disappears allowing new life to replace it. I’m still waiting….

Everybody is different. Everybody deals with grief differently. This approach worked for the author but not for me.

Maybe another way to look at it could be that life exists outside the black hole. The black hole is always there. Somedays it’s powerful and sucks so much life force out of your universe. Other days not so strong. But the key thing is that although it never disappears a new life exists outside it – it’s your choice, your journey that determines how far you move from it. – that’s a bit of my inner Carl Sagan coming out in me.

My current take is a little different. It’s a dark place with doors – maybe it’s inside the black hole. My thinking is that when Bereavement occurs doors begin to shut (many permanently) on my old world. My old world will always be there I just can’t go back to it. It’s up to me to decide if I want to continue to stand next to these closed doors. As well as doors I will also discover windows into my old world. Those windows are too small for me to re-enter my old world but they do allow memories to enrich my soul. In the darkness other doors are created. They lead to new worlds, new experiences. On my grief journey I will come across these new doors. It’s my choice whether I decide to open the new door opportunities or not. Maybe I will make a few drinks, pull up a chair and take my time.

I carry my family’s trait of not having any sense of direction. What could possibly go wrong with me stumbling about in the dark trying to find some random doors…..

Being stupid

Son accidentally knocks something off a shelf and it’s smashed. Son is mortified but I try to reassure him that it’s fine. These things happen to everyone. But he’s not happy.

“It’s because I’m stupid. It’s the same as why I am in the bottom set, it’s because I’m stupid. It’s the reason the teachers don’t spend much time with me, it’s because I’m stupid.”

Poor kid. It is so difficult for him. His logical mindset cannot fathom out school politics. He can see kids he consistently gets higher marks than sitting in sets above him. He can see teachers focusing on other children in class – often the disruptive ones. He hears me and the health professionals complaining to school about them not recognising his potential – but nothing happens.

Today homeschooling is looking a likely option. Practicalities still to be worked through. Finances will be a challenge. Maybe looking for a switch in the summer. This allows for one final push with school. Months to sort out the details – plenty of time.

Piece of cake. Talking of a piece of cake.

Our Prime Minister is still telling us that we can do Brexit in a few weeks. Really.

She assures us that they have the best people handling the process. Really.

My Dad wouldn’t have trusted them with a stick of rhubarb never mind the keys to the country.

But our Government does have it uses. They give us so many examples of real stupidity. I told our son about how our Government had decided that we needed extra emergency ferry capacity. The Government decided to give the contract to a company which has never run any sort of transport service and unbelievably doesn’t have any ships….

When our son heard that he smiled and said “Now that is properly stupid. Maybe I’m not as bad as I think I am.”

Son you are brilliantly gifted. Unfortunately the Government is not…..

Silence….

5 Days 14 Hours xx Seconds

No my blog has not been sponsored by Jack Bauer and the 24 TV Production Team. It’s the time I’ve gone without speaking to anyone (excluding our son). I’m not sure if I should be proud or a tad worried. Maybe both.

So almost a week without a phone call, chance meeting or random conversation. Even on two long runs – didn’t bump into a single person. Its one of the prices you pay for living in a small village.

It’s an odd feeling. Have I been secretly ostracised. Has my liking for Nickelback finally caught up with me…….

I had assumed my streak would have ended today as today was the food shopping trip. However I managed to get round the aisles without uttering a word. I did smile a few times at random folk. Surely a conversation will be struck with the assistant on the cash till. But no. All the tills were full so I opted for the self service lane. No scanning problems encountered so the streak continued.

Tomorrow I have to go to the work unit but that is in a largely deserted industrial estate and I will be the only person in our building. So the streak may continue into Thursday. Hang on a minute Thursday is Valentines Day. Wow am I going to be seriously cranky by the 14th…

Anyway we have started a little wager, who will break my streak. I’ve gone for a random cold caller with my first words being “will you just bugger off”. Son is going for the postman or randomly a lost Donald Trump.

I will keep you posted…..

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.

No more than four words

We tried a new game a few hours ago. We had no more than 4 words to describe someone. It initially started as purely a wrestling game but spread out into the wider world. It sounds easy but I found it extremely testing. Just shows how verbose I have become.

Anyway it started off with Wrestling.

AJ Styles – Son (Best Wrestler on Earth), Dad (He has lovely hair)

Becky – Son (The Man) *** that’s on all her T-shirts

Undertaker – Son (A bit creaky now) Dad (Older Than Me)

Edge – Son (Best Entrance Music Ever)

Kane – Son (Still my favourite)

Brock Lesnar – Son (Paid Too Much) Dad (Scary but very boring)

Vince McMahon – Son (Likes Pretty Women) or (Likes Big Sweaty Men)

Then we went outside the Wrestling world

President Trump – Son (Sneaky and not nice) Dad (Plays too much golf)

Stephen Hawkings – Son (Science GOAT) *** GOAT stands for Greatest Of All Time, Dad (Appeared on The Simpson’s)

Einstein – Son (Science Second GOAT)

Homer Simpson – Son (Dad)

Hillary Clinton – Son (How did she lose)

Barack Obama – Son (Very Nice Clever Man) Dad (Can We Have Him)

Bill Clinton – Son (Cheeky and Naughty)

Bono – Son (Dad hates him) Dad (I hate him)

Gordon Ramsey – Son (Never heard of him) Dad (###@### f### off)

Bear Grylls – Son (Too mean to Bugs)

Squidward from Spongebob – Son (Dad)

PewDiePie – Son (YouTube Sensation) Dad (Who ???)

JK Rowling – Son (Made Money from Magic)

Patrick from Spongebob – Son (Dad)

Messi – Son (Footballs GOAT) Dad (Sign for Newcastle Please)

Arnold Schwarzenegger- Son (Terminator) Dad (Get Into the Chopper *** with an Austrian accent)

David Attenborough – Son (Mr Wildlife, Legend)

James Bond – Son (Drinks, Women, Guns) Dad (Sean Connery)

Prime Minister May – Son (Useless and Not Nice) Dad (Worst Ever PM)

Angela Merkel – Son (Proper Leader) Dad (Better than ours)

David Cameron – Son (Useless but almost nice) Dad (Caused this Brexit mess)

David Beckham – Son (Overrated) Dad (Never Liked Him)

Bill Gates – Son (Very Clever Very Rich) Dad (No More Updates Please)

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”

Enlightened by a flapjack

Son has always had a healthy appetite, but unlike his dad it doesn’t seem to impact on his body shape. At his last school (with less than 50 kids) lunch was very relaxed, with room to spread out and time for him to have several helpings.

At his new school meaningful intel about the practicalities of the school day has dried up. No feed back from school and a son who often wants to quickly forget about the traumas of the day. So I had no idea how lunchtime was going. I payed the school meal bill online and assumed a balanced diet was being consumed. He never complained about it so it must be ok – that’s my 479th bad parenting example, complacency. I did notice that he had a remarkable appetite on his return. Often eating me out of house and home.

This week as I paid the online meal system I noticed by chance an option to view what the menu was. Reassuringly it looked pretty good. Then I noticed another well hidden option which was tomview what he had actually selected. The selection was very enlightening…

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5th Sept – Pasta Main Meal

6th Sept – Macaroni Cheese (very surprising as he hates this)

7th Sept – Flapjacks x2 (sweet granola bar)

After that every day has been Flapjacks x2 apart from 2 days which showed up as a Tuna Sandwich.

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By my calculations that’s 184 Flapjacks since September. Bugger – that’s my 480th bad parenting example, must stop swearing.

So it was time to have a more in-depth fact finding chat with our Son. Apparently on the first two days only his year group was in school. It was fairly quiet and he enjoyed his pasta dish. On the second day he thought the sign said pasta meal and was a bit miffed when he found macaroni cheese on his plate. After those two quiet days school lunch has become a nightmare. Too many kids, too little space and limited time. For a main meal you have to queue up for about 20 minutes. After that you need to circle round the dining area waiting for a space to become free. A bit of a nightmare for anyone, a lot of a nightmare for someone with Aspergers. To jump the queue you can opt for either a Sandwich or Flapjack or icebun. Queue jumping it was then for our son. I was puzzled why he broke his sequence of Flapjacks heaven with two Tuna Sandwiches (especially as he doesn’t really like bread). Apparently they had sold out of Flapjacks….

I have now spoken to school but they can do little, just too many kids to feed. I suggested staggering the lunch starts but apparently this cannot be done logistically. Really!!. They will however think about some dyslexic friendly food signage.

So I’m not sure where this leaves us. Packed lunch is not an option. These have to be dropped off at another part of the school prior to the first lesson and this would just provide more school stress for him. He’s never going to queue. So it’s Flapjacks, sandwiches or go hungry. I suppose at least he is eating something- 481st bad parenting example, it’s not a healthy option. Will just have to ensure he gets a good breakfast and have plenty of food in for his return.

One last thought.

After our conversation he asked what was for tea.

Rather sheepishly I replied

“I baked a fresh batch of Flapjacks this morning”

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For a different and far more astute take on the autism school lunchtime trials please read Robyn’s great post from earlier in the week.

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….

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…