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 · 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 · 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 · 73 Comments

York is not the end of the story

It only takes us 30 minutes to drive into our closest city, the beautiful York. We are so fortunate to live so close to such an historic city. Such a rich pedigree.

  • It was founded by the Romans in 71AD,
  • The Emperor Septimus Severus ruled the entire Roman Empire from York for 2 years,
  • Constantine The Great was proclaimed Roman Emperor in York,
  • York was captured by the Vikings and named Jorvik,
  • Guy Fawkes (remember remember the fifth of November) was born in York,
  • York Minster is one of the worlds largest Cathedrals and took 250 years to build. It is the largest Gothic Cathedral in Northern Europe,

  • The Shambles is the best preserved ancient retail street in Europe dating back before 1086,

  • Dick Turpin the famous Highwayman was executed in York,
  • It has 3 miles of ancient City Walls still intact,

  • It is regarded as one of the worlds most haunted cities with over 500 recorded ghosts,
  • It has the worlds largest Railway Museum,
  • While other Northern British Cities built their wealth on coal, steel and textiles – York made it on Chocolate and Sweets. Rowntree’s and Terrys.

That was supposed to be the end of the post. Trust me York is worth a visit. Basically it’s a really cool City. Especially for a young kid with aspergers whose thirst for facts just keeps growing. He just laps up the facts. When I started writing this post I asked our son to supply me with the information. I completely trust his memory and haven’t bothered to double check the facts.

So it’s so upsetting when he came out with the following Statement a couple of hours later:

“I don’t want to be stupid, I would love to be clever one day”

So off we went for another late night dog walk. I try to provide reassurance. Try to build up his confidence and restore his faith in his dreams. But it often feels like a short term fix. Applying a temporary bandage to the wound. A bandage only protects the wound it doesn’t treat it. As Extreme would sing – I need to find more than words. I need to raise my game…..

Posted on by bereavedandbeingasingleparent · 53 Comments

Put the cat in charge

I was blog chatting (or whatever it is called these days) with a friend today and somehow politics came up. When I say politics I mean really silly politics. Our politics is grim. Very grim. One of the only fun elements is when one of our smallest parties enters the elections. The Monster Raving Looney Party. It’s almost as if Monty Python had entered politics. It was started in the 1960s by the musician called Screaming Lord Sutch.

This was the Party who had a real cat called Catmando as its joint leader for 3 years.

Some of its brilliant policy ideas have included:

  • Make the tax system more complicated so that it is harder for companies to find loopholes
  • Make it illegal to walk under ladders
  • To prevent global warming all buildings will have air conditioning units on the outside
  • All politicians should paint themselves permanently from head to toe in the colour of their party
  • All socks to be sold in packs of 3 in case you lose one
  • Introduce a 99p coin
  • To save money they would only operate our nuclear missiles at weekends
  • Build a really big wall (or hang on that’s not one of the Looney Parties policies).

The scary thing is that actually some of the ‘crazy’ policies they came up with have over years actually become rather sensible and have been adopted by the government. We have pet passports now and who was the first party to propose them. They jokingly proposed 24 hour licensing for places selling alcohol (had been very restrictive hours) and a few years later it became law. Back in the 1960s they campaigned to have the voting age reduced to 18 (now the law and how was this ever considered a mad idea).

Sadly they never quite get into government. Maybe because the looney vote is split. At the last election you had the Looney Party, plus you had a chap called Lord Buckethead, some guy dressed as a fish finger and some chap dressed as Elmo.

Some would argue that recent governments have been infiltrated by loonies.

What am I wittering on about. I don’t really know. I think the point is that when the world seems really bleak and sad. When you want to just stand outside, look at the heavens and scream. To hear your own tears raining down on this increasingly alien land. Just sometimes the only thing that keeps you going is a bit of silliness. It brought me back from the edge. Our dip into politics today certainly made our son laugh. It made him forget about his worries for a few minutes.

If the Looney Party has indeed a track record of starting sensible policies off then maybe they should come up with a policy of banishing sadness and anxiety. Maybe in a few years it becomes reality. I could vote for that.

Posted on by bereavedandbeingasingleparent · 49 Comments

Sleepwalking

New Years Day brought the traditional trip to the Yorkshire Wildlife Park. It was a wonderful few hours – more of that in the next post.

On our return things seemed fine. Then steadily things started to deteriorate and eventually we had a full on anxiety vortex. Consuming so much energy and hope.

Our son started to think again about school. Like me he often tries to overthink problems. Visualise potential outcomes. And in a similar way to Dr Strange when asked by Ironman about the millions of potential scenarios to stop Thanos – “he could only find one option which had a chance of success”. In our Son’s analysis he could only see one option with a chance of success – leaving school as a solution to his anxieties.

  • Teachers who don’t understand him
  • Falling further behind in reading – he realises that although he is making progress this is not catch up progress rather this is at best slowing the widening gap
  • Friendships
  • Low school expectations
  • Little help
  • Sensory overload at school – too much noise, too many people
  • Too much homework
  • Constant fear of getting negative comments and falling foul of the penalty system. Even something like forgetting to button up your top button or forgetting to bring in your planner producing automatic penalties.
  • A school timetable which brings tight deadlines and logistics pressures to someone with Aspergers.
  • In a disruptive class
  • And on and on …..

Again today I couldn’t find the healing words. Just couldn’t stem the raging anxiety vortex. The vortex doesn’t just suck our son’s energy it feeds on mine to. Increasingly tired. Feeling broken. Mind keeps crashing back to those 6 weeks when I lost my mum and then my partner.

We try to get some sleep but the vortex continues to rage and our son is beyond sleep.

“Dad we need to do something, anything”.

Come on let’s take the dog for a walk.

“But I’m in my pyjamas and it’s nighttime”

Get changed quickly then.

Ten minutes later at 10.50pm we are walking the dog in the pitch black with one cheap torch to guide us.

The dark, the quiet, the spookiness – whatever the reason but suddenly the anxiety vortex is calmed.

Talk is now about the things we really wanted but never got as a kid. The things we love and hate about England. Favourite foods. Ghost stories.

Hopefully for one night our son is ok. He is asleep and hopefully has a good night. We dust ourselves down and go again tomorrow.

Posted on by bereavedandbeingasingleparent · 52 Comments

Call from school

Friday was going to be a big work day. After that video Thursday was a write off. Friday was positive, Friday was going to be a big work catchup day. So taking no risks with unexpected grief reminders – a carefully selected range of cds was lined up. Work started.

Then the phone rings. The phone call parents dread from school:

“I’m sorry your son is not so good at the moment can you come and pick him up”

As a couple you then have that urgent exchange of calls or texts to decide who is best placed to pick up. Unfortunately as a single parent all you can do is sigh, switch off the laptop and head to school. Monday is now ‘manic work Monday”.

Luckily it was nothing too lasting. Anxiety leading to an upset stomach which is quickly remedied by Tomato Soup and the prospect of the weekend. We often forget how stressful school can be for kids. Added to that – Autism and schools are not natural bed fellows.

Schools often forget that they don’t really do that much to relieve this anxiety. I haven’t forgotten that national budget cuts restricts what schools can do. But surely progress can be made. Large parts of the school are quite old and pretty grim. Without doubt the grimmest location tend to be the toilets. They are awful. Dark, smelly, completely unwelcoming. His last School’s facilities were awful and as a result many of the kids refused to use them. According to our son he only used them once in 5 years. At his new School the toilets are equally Victorian. With the added ingredient that they are poorly monitored and are a hive of bullying.

IS THIS NOT 2018….

OR IS IT A PINK FLOYD VIDEO