Posted on by bereavedandbeingasingleparent · 60 Comments

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.

Posted on by bereavedandbeingasingleparent · 81 Comments

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…..

Posted on by bereavedandbeingasingleparent · 57 Comments

Progress?

“Dad how do you spell Transylvania, I am trying to find a picture of Dracula and his castle”

Our son frequently asks how to spell words when he is using his iPad. As he tries to type out the words which I have attempted to spell the hope is that it will help with his Dyslexia. He is trying to move away from just using the iPads speech recognition app. In this vampire case we had an issue with either my spelling (most likely) or our son’s typing.

“Dad that doesn’t look like Dracula or his castle. It’s a man with make up wearing a very short skirt.”

Yes that was an interesting conversation we had about a word sounding a bit like Transylvania.

We have continued to work at home on our son’s dyslexia. It’s his biggest concern and causes him so much stress. However it’s a constant balancing act as he gets so tired at school. I want him to have time to play and relax. But when we do work we have tried a number of techniques. I talked about some of these in an earlier post

https://bereavedsingledad.blog/2018/11/14/home-help/

Maybe, just maybe we are starting to see some progress. He is starting to recognise a wider range of words (although it takes time). Increasingly some of the more common words are starting to be recognised instantly. This is real progress. He is now starting to read Graphic Novels without the help of me or a reading pen. He is using the pictures, the words he can recognise and trying to figure out the words he can’t recognise. He can just about follow the story now. Hound of the Baskervilles is his favourite graphic novel.

As long as he is up for the challenge we will continue to push. Learning to overcome dyslexia does feel like the search for the Holy Grail some days. But at least we now have some leads. Maybe we have started to narrow down the search zone. Let’s hope so.

Posted on by bereavedandbeingasingleparent · 81 Comments

He looks like a Neanderthal

This post has been sitting around my draft folder for a few weeks now. I just couldn’t get the wording right, it felt like I was saying the wrong thing. I just couldn’t find the appropriate filter to turn it into the post I wanted.

I want this to come across as a warm and loving post. I don’t want it to be seen as laughing at my son expense, rather laughing with him at our strange world. If it does come across as insensitive then please tell me and I will delete it immediately. If that’s the case then I am so sorry.

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

Its few years now since we first had Autism and Aspergers mentioned to us. At the time a Doctor talked about the symptoms. I wish he had framed it as his unique personality. One of the things he mentioned was and I will use his language

“Inappropriate language”

“Heartless and unfeeling speech”

“Something we may treat later in life”

Sorry Doctor there is only one person in the room with those traits and it’s not our son.

Our son has a beautiful and unfiltered language. He just can’t lie or dress things up. As my Dad would say he calls “a fish supper a fish supper”. This can lead to some interesting situations. We have talked about it. Our son always says that this is just who he is and he doesn’t want to change.

I will give you a few examples:

  • Once a nurse told him her age. Son’s response was “Really I thought you were a lot older”,
  • After I told a joke that went completely flat as a person tried to take our son’s picture. Son’s response “That’s my Dad he is a complete Muppet”,
  • When his mum was seriously ill a Doctor was trying to get a needle into her vein. Son asked the Doctor “Are you a proper Doctor”. The rather stuffy Doctor replied with all his qualifications. Son responded “Well it doesn’t look like you are!”
  • After a school play he said to a girl in his class “You are really pretty but wow you can’t sing.”
  • On a French train he told a rather odd looking guard with a beard “Have you got rabies.”
  • His mum was petrified of heights. We were on a very wobbly cable car and she started to panic a bit. Our son helpfully pointed out “Yes Mum we must be 500ft in the air so if the cable breaks we will die.”
  • On another French train he told the food trolley person “Have you got any food that doesn’t smell of wee..”
  • At his grannies and she had an accident in the kitchen. I said to my mum “Did you just swear?”, Granny said no. Our son said “But you did swear you said Twat.”
  • To a dentist who did smell of garlic our son asked “Have you ever considered using a mouth wash.”
  • While I was trying to lift some really heavy weights “Dad that’s not a good look. You look like you are having a heart attack.”
  • When he went for an X-ray on his finger he asked if it was safe. The technician said completely safe. Our Son replied “If it’s safe then why are you heading behind that glass panel.”
  • When I first started growing a beard he told me “It made me look like ZZTops bus driver”
  • His new Headteacher gave a speech about school excellence and academic achievement. When he came to our son he asked what was he looking to achieve at the school our son replied “Sir I’m looking to take my gap year as soon as I can.”
  • At a Wrestling show and at the perfect moment when the crowd fell silent he shouted out “Dad that’s the female wrestler you fancy. She doesn’t seem to be wearing much why don’t you take a photo of her.”
  • To someone serving food at a cafe he said “I really think you should wash your hands, they are very dirty.”
  • To a man in the village our son told him “You look like an old Father Christmas.”
  • At a rock concert he stood next to a very large biker and said just loud enough “He looks like a Neanderthal.”

We don’t see all this as inappropriate or heartless. Those are just so awful ways to describe this. To write autistic people off as unfeeling or insensitive reveals more about the people making those claims. Please rather see it is unfiltered and pure speech. Welcome the individuality. I for one embrace it.

Posted on by bereavedandbeingasingleparent · 95 Comments

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.

Posted on by bereavedandbeingasingleparent · 40 Comments

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…..

Posted on by bereavedandbeingasingleparent · 56 Comments

Like a Swiss Train

“Dad if the bus was like a Swiss Train then I might be happier about getting it everyday”

My son if it was like a Swiss Train and served the same chocolate I would live on the bus. To someone who has been brought up on the infamous UK train network the concept of clean, comfortable and sometimes opulent carriages is rather alien. That’s before we even think about precision punctuality and a nice food service.

I remember waiting for a train in Switzerland one morning when the station announcer informed us that an avalanche had blocked the track (the announcement was in 4 different languages). In the U.K. that would mean the track would be shut for about 9 months. Or if our Prime Minister is sorting it out maybe never. A few minutes later the station master started speaking to all the people waiting on the platform. In perfect English he informed me that the specialist team was on site and he genuinely seemed horrified that the train would be late. After a couple of minutes it was announced that the avalanche had been cleared and they were deeply sorry that the train would be 10 minutes late. Ten Minutes……

Son survived today’s bus trip but it wasn’t a bundle of laughs. Although he did appreciate Dads attempt at a slushy drink when he came home. The dog enjoyed chasing the ice around the kitchen when someone forgot to put a lid on the blender. Silly dad.

When budgets are tight it is difficult for councils to run a school bus service. We actually should be thankful that we have one. But the school bus run is often so difficult for many kids, especially those spectrum kids. I’m not sure I like that phrase for some reason, may not use that again.

So many factors contribute to the difficult school journey:

  • Different drivers everyday. Our son would really appreciate just one familiar face and it spooks him when a new driver appears,
  • Frequently dirty bus interiors. Let’s be polite and say they tend to be not that clean. Again to someone who hates touching potentially dirty surfaces this is not conducive to a relaxing trip,
  • Poor behaviour. I think the term bear pit comes to mind. To someone who finds social settings challenging this type of behaviour is really distressing,
  • Different sized buses used daily. Because of his Aspergers he likes routine. Not knowing what type of bus will turn up can and does disorientate him. It is a big issue if the bus randomly changes from minibus, to medium size bus, to large super coach,
  • Because the bus size changes and the large number of kids using the bus, seating position is random. On an ideal day he can have a window seat by himself just behind the driver. However when smaller buses turn up, seating is restricted so he is often forced to sit next to someone who he probably does not know. This is an absolute nightmare for an Aspergers kid.
  • The buses have such a tight timetable. On arriving at school the kids only have a few minutes to get to the first class. If you are late you get an automatic negative. After the final lesson the kids only have 10 minutes to get on the bus before it leaves. Added to this it is a big school site and also due to its age it’s a bit of a maze. That’s a lot to cope with especially for someone who can go into meltdown when he needs to rush and who struggles with the concept of time. He also takes a lot longer to pack his bags and put things like coats on. It’s a recipe for anxiety and stress.

I haven’t got an answer. I have contacted the school and council. Our Health Service has repeatedly raised similar concerns in connection with many of its patients. Nothing changes. My last offer was that I would be more than happy to volunteer to work with the authorities in designing the next tender process for school services. I suspect I know the two word answer to that, something like **** off. In an ideal world we could get the Swiss Public Transport experts to run the school bus. That would be problem solved and wow the chocolate…..

Posted on by bereavedandbeingasingleparent · 70 Comments

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.

Posted on by bereavedandbeingasingleparent · 75 Comments

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…..

Posted on by bereavedandbeingasingleparent · 105 Comments

Dad sit down

Today was supposed to be a full on work day. But again the Laptop had other ideas. Clearly it was an update day. Luckily my old tablet came to the rescue. A slow rescue but it was a rescue. I did find a use for my laptop. As it updated it got warm and a nice warm thing is too much for a dog to resist. So my laptop is now an expensive comfort blanket to sleep on.

When our son arrived back from school he was smiling. One of those smiles.

“Dad sit down”

No it’s ok

“Dad no I think you should sit down”

Ok I’m sat down, go on hit me with it.

“Well I tried doing the work with my left hand. It was bad. Anyway for the Games Lesson I was sent to a teachers room. I was told that I could do my homework. I told the teacher that I had no homework which needed doing. So she said I should just get a book from the shelf or do something educational on the iPad. I just sat and tried to play Crossy Roads for an hour. I beat your record.”

Well that wasn’t too bad, maybe next time find something rather than a game to do. Certainly don’t beat your dads best score…

“That’s not all. During one of the lessons I banged my right hand on the desk. It really hurt. But the teacher just told me to carry on working”

That’s not good. I’m going to speak to the Head about that.

“Not finished yet Dad. They have decided which options all the kids are doing for the next term. I was told that I couldn’t do the option I selected because of my hand so they told me that I have to do another one. They have given me the Book Reading class. Do you think they have forgotten I’m dyslexic.”

The Book Reading Class for a dyslexic. You couldn’t make it up.