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.

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…

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.

Sunday’s, Sunday’s

Sunday’s are a time for reflection. For our son he is not at school but constantly worrying about going back the next day. Constant mood swings. It’s a transition day.

Dealing with death. That’s 5 deaths in 4 years. Again trying to comfort a heartbroken son. A quieter much less fun house. Transitioning to another period of darkness – again. Death is awful and is so so difficult for kids to handle. This grieving process is especially difficult for autistic children.

Trying to refocus for the week ahead yet still so tired from the past week. So many tasks to finish yet so many more tasks to plan.

Son having a couple of hours extra in bed. Hopefully shutting the pain out for a while longer. No laughter, no talking, no warmth. Trying to think about the coming week yet realising the house feels so empty – again.

Hopes for more social interaction yet still strangled by the isolation of the preceding week. Day after day, no phone calls, no chance meetings, no…… I am so so grateful for my friends reading this, you literally are my only connection.

Trying to plan for the educational week ahead yet so frustrated with the constant battles with school. Yes progress but why does it have to be such a tiring fight.

Trying to plan ways to make our son happy yet so broken inside.

I think that’s why Sunday morning is always the time that the icy grasp of sadness is strongest. Especially this Sunday. Ice cold thoughts echo round the confines of our home. Self doubt takes hold. I have never been able to break this cycle. I certainly won’t break it today. Probably never will.

No Text Book Grief 2

A friend (emergingfromthedarknight) posted a comment about my earlier Grief Expert tirade. To paraphrase she talked about my mum loving squirrels and the fact that you sometimes read about loved ones returning and their spirits appearing in animals.

I remember reading a similar thing. The one I read was about a widow. Her husband would spend his free time stood by one particular tree looking into the valley. The widow kept horses and she was offered a colt. The colt didn’t like being close to humans and was quite difficult. When the widow went to see the colt it immediately trotted up to her and was really friendly. As a result she bought it. The colt almost immediately went to the same tree as her late husband. Everyday the colt could be seen standing by the tree looking at the valley.

I must admit my friend did get me thinking. What if my mum was in the spirit of the squirrel. That little squirrel who seemed to join me at the grave. Then a rather scary thought came to my mind. What would have happened if my mum had manifested herself as her favourite animal. I suspect I may have found a turn of pace quicker than a sports car. My mums favourite animal was a TIGER.

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….