Posted on by bereavedandbeingasingleparent · 76 Comments

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….

Posted on by bereavedandbeingasingleparent · 51 Comments

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…

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 · 60 Comments

Football

I wrote this just before the world turned again on Saturday. Trying to help get him back to this mindset again. Thankyou for all your support, it really has helped. I know some people will say it was just a pet, but given what went before it….. it really has hit him hard. Feels like he has regressed back to the days when his mum died.

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“Dad I’m going to tell you the winners of the main football leagues since 2009.”

I grabbed my iPad to check the dates and help with the blanks, shouldn’t have bothered

Ours is easy it’s 2018 Man City, 2017 Chelsea, 2016 Leicester, 2015 Chelsea, 2014 Man City, 2013 Man Utd, 2012 Man City, 2011 Man Utd, 2010 Chelsea and 2009 was Man Utd.

Scotland is easy it’s Rangers for the first three years then Celtic since 2012.

In France it’s easy as it’s PSG except in 2009 when it was Bordeaux, 2010 Marseille, 2011 Lille, 2012 was a team starting with M but I can’t say it and 2017 Monaco.

For La Liga it’s Barcelona in 09,10,11,13,15,16,18. Real in 12,17 and Athletico in 2014.

In Italy Juventus have won it since 2012, 09 and 10 was Inter, 2011 was AC Milan.

In Germany 2009 it was Wolfsburg, 11 and 12 was Dortmund, boringly Bayern have won the rest.”

A slightly stunned Dad was list for words. He didn’t like football this time last year. Struggling for something to say all I could manage was – who won the Dutch league in 2010?

“Trying to trick me, that was Twente.”

Ok who won the Turkish league this year?

“Galatasaray”

How can anyone remember all these facts. It is beyond me. It’s also beyond me why our society is so quick to write off so much talent in our autistic stars.

“Dad when did your team last win the league?”

Not that many years ago son….

“Dad you will find it was 1927.”

Bugger…..

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.

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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 · 63 Comments

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 character – but 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….

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 · 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 · 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…..