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.

It’s not just vampires that don’t like

Its not just vampires that don’t like garlic…..

“Dad I have to take some ingredients in for Food Technology. I tried to write the list down.”

So all the ingredients were carefully packed into the school bag. The last item. What does that say, big something.

“Think it’s a big garlic.”

Ok you can have a few cloves. Job done.

Fast forward to the end of the school day.

“Dad it wasn’t a big garlic it was a big turnip.”

No damage done and some laughs. Well that was until I went to empty the school bag.

Wow what a smell. A really strong garlic smell filling the room emanating from the bag. It was that bad I was tempted to call the Ghostbusters. Apparently when our son had discovered that the garlic was surplus to requirements he just throw it back into the school bag. Now everything stunk. The bag, the books, the pencil case, the calculator, the iPad.

One hour and one full bottle of Lemon Surface Cleaner later everything apart from the bag smelled ok. The fuming school bag would just have to be washed. Chucked into the washing machine – job done.

Contentedly I walked to make a drink. A thought crossed my mind. Houston we have a problem!!!! Some numpty forgot to empty the washing machine before the garlic bomb started it’s cycle.

60 minutes later. The bag still stinks. But progress – now the school clothes and my sports kit stink of garlic. So second washing attempt this time with triple the soap and half a bottle of fabric conditioner.

60 minutes later. The bag, clothes and now the washing machine stink of garlic.

Advice was sort from the internet. Third washing attempt but this time with added vinegar and three cut up lemons.

60 minutes later. Thankfully success. Strong garlic smell replaced with strong lemon smell. I’ll take that. Luckily after tumble drying the lemon smell is now almost pleasant. Unfortunately the school bag was obviously not tumble dryer proof. It now resembles a shrivelled prune.

A very tired Dad sits down with a well earned coffee.

“Dad you smell of garlic….”

I can now see why vampires don’t like garlic…..

No text book grief.

I shouldn’t listen to the radio as it frequently gets me so very 😡😡😡😡😡 mad. The local station had a programme about grief. It featured a so called Bereavement Expert who seemed to be reading from a text book released before the Rolling Stones were born. It was truly awful. We had callers who believed it was wrong to grieve for more than a week or so – people should jump into a new relationship immediately. We then had callers who believed you should lock yourself permanently in a grief isolation cell – staying there until you die. No other options mentioned. The expert and the callers just so quick to pick faults with others. A complete sea of ‘I know best’ attitudes. The Expert advised people to not hang onto loved ones ashes – deal with them promptly and then move on. Then the so called expert brought up the case of an elderly man who every year took his wife’s ashes out for a meal on their wedding anniversary. The expert thought this man needed help as this was deemed as unhealthy. He was instructed to move on. Yes it was sad but he should be considerate to the other people having a meal.

Deep Deep sighs followed by immediately switching to a bit of Green Day on cd.

You just can’t judge how someone deals with bereavement and grief. We all do it differently. No right text book approach exists. Finding a new love quickly, or never replacing your love or doing something in the middle are all fine. Just don’t judge and stop picking faults – you just don’t know anything about that persons life or what they are going through. I find reading and listening to other people’s experiences with grief really really helps. I love hearing people’s ideas. But I never ever judge them.

I’m calming down a bit now.

Maybe this year we will start scattering my partners ashes, maybe we won’t. A couple of years ago I scattered my mums ashes on her family grave. My mum was adamant, no ceremony at the grave. I would do it when I had time. No new words on the gravestone. So when the time came….

The graveyard does not allow unapproved ashes scattering. The Policy states that it has to be an official process. An expensive and time consuming process. So it was time to go into covert operation mode. I decided to opt for a backpack and a shovel type of look. It would make me look like I was here to do some gardening. As I walked to the grave I realised that this rather shifty appearance made me look more like a grave robber. Anyway the time came. Do I just scatter them or dig them in. I will do both. So some were scattered. Unfortunately it was so windy part of my mum may have made it to Norway. She always liked the sound of a Scandinavian holiday. I then started to shift away some of the grave soil. Bit of a worry thought – how deep are the coffins buried? A nervous glance to the side revealed a companion. On a grave 5 yards away was a squirrel also happily digging away. Was the Squirrel hiding some nuts or was the little fella also solemnly scattering some ashes. We will never know.

My mum loved animals. Mum loved feeding squirrels. She would smile at the sight of the squirrel burying the nuts. So as I walked away I hoped that the little fella had moved onto our grave. Mum would like that. Not sure the Bereavement Expert would though..

Putting this off for a while

Before the world changed we had quite good balance in our relationship. We both managed to maintain reasonable careers while making sure we always had one of us there for our son. Our trips out as a family curtailed when the Aspergers started to kick in more. However we realised it was important that we had time outs to recharge the batteries. My recharge times largely centred on climbing and going to see my football team.

The world has changed now.

Climbing has gone. Replaced by the very occasional trip with our son to do a bit of walking on some remote hill top.

Trips to see my Football team has kinda stayed in place. They feel like a connection with a much different world. Maybe three or four times a year our son will go to visit my sister for a few hours to allow a trip to see my team. Occasionally I can get a spare ticket so I can take our son to a match. More often than not my ticket is taking up by a friend.

Unfortunately a decision needs to be made. Something I have been putting off for a while. Football really doesn’t fit in with our new life. It’s very expensive. My son struggles with different environments – that even includes my lovely sisters place. My son will go to the stadium but the crowds don’t sit easily with him. It’s becoming very difficult to justify. It doesn’t help that my team is now owned by a really unsavoury and deeply unpleasant characterbut that’s by the by.

It’s difficult. I have been going for 32 years. It’s the only time I get to meet some of my friends these days.

But now it’s time to close a particular chapter in my life. Things change, life moves on, you adapt. So after one final match then it’s goodbye Newcastle United….

Plan X

The sun sets on another school week.

The school week almost ended prematurely this morning. To a child with Aspergers routine is the key. Outside the house at precisely 805am. Recheck the school bag contents. Go through the class timetable for the day. Reconfirm the after school plan. At 810am start listening for the bus to arrive. As soon as the bus is heard move towards the gate. As the bus passes confirm with our son where he plans to sit. As the bus does a u-turn son sets off for the bus stop.

This routine works well … most days.

Today as we left the house at 8.05. On plan. Bus is already at the bus stop. Oh s**t.

Suddenly we have a meltdown. The plan is out of the window. Poor kid doesn’t know what to do. After a couple of minutes he is frozen to the spot, in tears and unable to think. All I could think about was to reach for a scrap piece of paper in my pocket.

“Son this is Plan X, it’s our plan for this”

He looks at me and asks what does the plan say. Not sure son if I’m honest the scrap paper is my shopping list for the week.

“It says we start walking to the gate while I quickly check you bag and read out your class timetable. At the gate you tell me where you are going to sit. Then you walk calmly to the bus singing your favourite song”

We head towards the gate suddenly we are on plan or to be accurate on the shopping list. Suddenly he stops and he asks what does the plan say about what happens if the bus sets off before he gets to the bus stop.

Dad sits cross legged in the middle of the road and refuses to move. Thus stopping said bus.”

He smiles and says “you made that last bit up didn’t you.”

As the bus passes, he waves from the window and laughs. Silly Dad is sat crossed legged in the snow.

Maybe we need to think about our routines and schedules. Map out some of the things which might go wrong and plan some alternative plans. Not having to rely on a shopping list again would be nice. But at least we have Plan X now.

Safety Net

Photo taken from the top of The Niesen.

I never really thought about my own mortality. Before I met my partner my attitude to risk was “it will be alright and if something happens to me I’m not too great a loss to society”. After we became a family I started to become more responsible but I still had a reasonable risk threshold. If something happened to me our son would still have his mum and his granny.

This all changed when I lost my mum and then partner within 6 weeks of each other.

The first few days after my partner left us are still a blur. But I remember one incident like it was yesterday. It was my son’s first day back at school and I was driving to register the death. Suddenly a sports car pulled out in front of me. A suicidal overtaking manoeuvre. Luckily I saw him and managed to swerve onto the grass verge and miss him – just. At that speed it would probably have been game over. All I could think about was our Son. One second slower reaction time and he would have been parentless. The whole incident shocked me. Suddenly there was no backstop for our son. No cover if I couldn’t be there for him.

A couple of years later and it’s a new life. With new dreams, new hopes and new feelings. All the climbing and contact sports have been permanently ditched. No more drinking. No more stupid risks to my body. I just can’t take those chances anymore. I’m even more boring than I once was but much more importantly I feel that I am a much better parent now. Yes the world has changed. But hopefully I have adapted to it. The reality of parenting without a safety net…..

Wheelbarrow Train of Pain….

Parenting is a great but frustrating gig. You think you have cracked it and then it bites you on the bottom. As annoyed as I was this morning it is now out of my system. So many kind words eased the pain….I can’t thank you guys enough.

Anxiety and frustration builds. It makes you tired and makes you do strange things. I always look at it like a house. Everything is fine and then something goes wrong. A pipe bursts. The house starts to fill with water. The pressure builds. The first thing you need to do is release the water pressure. Find a window or door to open. Once the pressure is released then you can fix the pipe. Everyone has to find their own window to open. It will be different for each person.

In my case I did have a rather foolish window. When the frustration built I would go outside and literally find a wall to punch. Not good. Going back to my house analogy. I am no Captain America or Hulk. As hard as I punch the wall I’m not going to break through and release the water.

But a few months ago I found a new window to open. This one seems to work and is also scalable. When the frustration builds I go outside to our wheelbarrow. Fill it with all the stones, bricks and sandbags I can find. Then I push it round the garden. It’s hard work on the grass and slight slope. For minor frustrations I do one circuit of the garden. The greater the frustration the more circuits I do. Todays was a 10 circuit frustration. I call it my Wheelbarrow Train of Pain. It does relieve my frustrations and is quite good fitness training. The dog frequently adds his own dynamic to the circuit.

Our son just laughs at the Wheelbarrow Train of Pain. He is trying to convince me to modify it. His idea is rather than increase the number of circuits I should do just one circuit but reduce the amount of clothes I wear according to the frustration level. As a result a defcon 4 frustration would see a very cold and naked man pushing his wheelbarrow. Thats not a pleasant thought. Not at all.

Bad parenting

First taste of winter. Hardly alpine skiing conditions but at least it feels like winter. In some parts of Austria they have had 10 feet of snow falling over just 15 days. England grinds to a halt when we get 6 inches…..

Our son had been clinging onto the hope of a Monday school closure. I always suspected he would be disappointed. The school has many faults but it does seem immune to the weather. It never seems to close.

It feels so cold in my heart today.

You get mornings when you are tired and then you get mornings when you are TIRED. Today I just can’t get going. Lack of sleep eventually gets to everyone. It did this morning and I hate it.

As the school bus trundled down the road.

“Dad I don’t want to get on the bus, will you drive me”.

I realise how daunting that trip is to our son and my usual answer would be – don’t worry, no harm done let’s get in the car.

Not today……..

Today I told him to get onto the bus. As soon as he was on the bus my mind had cleared. What was I thinking of. What a prat…

Am I just looking for excuses. Probably it’s just down to awful parenting. Part of me is hoping I can blame fatigue. The other part of my brain is looking to give myself a good kicking. Will certainly try to make it up to the little fella tonight. Must raise my game, son deserves better than this…..

150 miles apart

Son just looked at me with that knowing smile.

Well played Dad”

He is accustomed to the occasional mess up. I like to think that it’s all part of his educational journey. You can learn from the best but wow you can learn from the worst….

Our son really loves rock music. One of the few public gatherings he actually looks forward to is a rock concert. He has seen Iron Maiden, Hollywood Vampires, The Darkness and The Damned. This year is promising to to be a good one with a number of concerts already booked. Bank Manager not best pleased. The bookings is today’s educational cockup learning event.

Somehow Dad has managed to book for us to see Thunder in York and on the same night Ozzy Osbourne 150 miles away. That might cause a few logistical issues.

So what to do.

Our son has not seen either acts. His Dad has seen Oswald but never Thunder. I have really wanted to see Thunder for about 25 years. Only thing to do is let our son decide.

A decision I would have agonised over for days was dealt with in seconds by the logical Aspergers mind.

I would like to see both bands Dad. One is a legend the other is a favourite of my Dads. Both are great live. Thunder will hopefully be going for years. However Ozzy is Ozzy. It’s unbelievable that he’s lasted this long. Probably last time we will be able to see him. Let’s see Ozzy and hope we see Thunder maybe next year.”

Decision made. I can give my tickets to my brother in law.

“But Dad since we are talking Ozzy and anything can happen with him. Can we hold onto the Thunder tickets until the last minute – just in case.”

Cryogenics v Books

I was reading a little bit of a Carl Sagan’s Book to our son. Our son asked me to reread a couple of quotes.

We are like butterflies who flutter for day and think it is forever”

“Books permit us to voyage through time, to tap the wisdom of our ancestors”

We then had a long chat about life, death and living forever. Cryogenics came up.

It got me thinking maybe books are a better bet than cryogenics. If you are talented enough to become a book author then your words can live forever. Books are so much cheaper. Books are not as frigidly cold and far more illuminating. I think Carl would vote for books.

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