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Let’s break some rules….

Our school like so many others prides itself on discipline and the behaviour of its pupils. This is achieved with an inflexible set of rules. If a pupil breaks a rule then it’s an automatic negative. Four negatives in one week means detention. Repeated detentions bring the sanction of isolation. A serious negative can lead to an immediate spell of isolation. It’s all a bit Dickensian – was going to say Shawshank Redemption but that’s probably not a good example to use really…

The rules must come in about 7 volumes so too many to list. But let’s give a flavour by quoting some of the negatives which our son has seen issued.

  • Unbuttoned shirt
  • Incorrect positioning of the tie
  • Throwing a snowball – after school and not on school premise
  • Small coloured markings on white sport socks
  • Parent not signing off the weekly planner sheet
  • Forgetting your planner or text book
  • Incorrect colour pen used. Has to be black, unless it’s a correction which has to be green – still haven’t worked out what blue is supposed to be for
  • Forgetting to bring your cooking apron
  • Bringing the wrong measurement of food ingredients
  • School iPad running out of battery
  • Carrying snacks in a rucksack
  • Going to the wrong lesson if you misread the timetable
  • Getting lost in the school – it is a big school area with several separate buildings
  • Bringing the wrong type of calculator
  • Repeatedly asking to go home if you are unwell
  • Pointing out that the teacher had got a fact wrong (son’s only negative so far)

And on and on

Our son came home yesterday to say that he had to complete a series of corrections in his book. Failure to do so would result in two negatives…. When I checked he had one answer correction to make – fine. But he also had to correct spellings. As you can imagine with dyslexia he had many. We had the dreaded red “spelling mistake” label on almost every line. I gave up counting at 30.

The school has another rule which says that for every spelling mistake the pupil has to write out the correct spelling three times.

Call me awkward but he’s got dyslexia. How can this be right. I have spoken to the school on several occasions but I am told it is the rule for all pupils. Well bugger it. I have emailed school to tell them that he is not doing the corrections. We will add the words he has struggled with to our home reading work. But he is definitely not writing out the corrections three times. If he gets a negative for this then I have warned them that I will consider legal action against the school. U.K. organisations need to take reasonable steps to avoid discrimination on the grounds of disability. Under the Equality Act Dyslexia is classed as a disability. OR the school could just give me the detention – that could be really interesting (unbelievably I have never suffered that punishment).

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Being stupid

Son accidentally knocks something off a shelf and it’s smashed. Son is mortified but I try to reassure him that it’s fine. These things happen to everyone. But he’s not happy.

“It’s because I’m stupid. It’s the same as why I am in the bottom set, it’s because I’m stupid. It’s the reason the teachers don’t spend much time with me, it’s because I’m stupid.”

Poor kid. It is so difficult for him. His logical mindset cannot fathom out school politics. He can see kids he consistently gets higher marks than sitting in sets above him. He can see teachers focusing on other children in class – often the disruptive ones. He hears me and the health professionals complaining to school about them not recognising his potential – but nothing happens.

Today homeschooling is looking a likely option. Practicalities still to be worked through. Finances will be a challenge. Maybe looking for a switch in the summer. This allows for one final push with school. Months to sort out the details – plenty of time.

Piece of cake. Talking of a piece of cake.

Our Prime Minister is still telling us that we can do Brexit in a few weeks. Really.

She assures us that they have the best people handling the process. Really.

My Dad wouldn’t have trusted them with a stick of rhubarb never mind the keys to the country.

But our Government does have it uses. They give us so many examples of real stupidity. I told our son about how our Government had decided that we needed extra emergency ferry capacity. The Government decided to give the contract to a company which has never run any sort of transport service and unbelievably doesn’t have any ships….

When our son heard that he smiled and said “Now that is properly stupid. Maybe I’m not as bad as I think I am.”

Son you are brilliantly gifted. Unfortunately the Government is not…..

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Silence….

5 Days 14 Hours xx Seconds

No my blog has not been sponsored by Jack Bauer and the 24 TV Production Team. It’s the time I’ve gone without speaking to anyone (excluding our son). I’m not sure if I should be proud or a tad worried. Maybe both.

So almost a week without a phone call, chance meeting or random conversation. Even on two long runs – didn’t bump into a single person. Its one of the prices you pay for living in a small village.

It’s an odd feeling. Have I been secretly ostracised. Has my liking for Nickelback finally caught up with me…….

I had assumed my streak would have ended today as today was the food shopping trip. However I managed to get round the aisles without uttering a word. I did smile a few times at random folk. Surely a conversation will be struck with the assistant on the cash till. But no. All the tills were full so I opted for the self service lane. No scanning problems encountered so the streak continued.

Tomorrow I have to go to the work unit but that is in a largely deserted industrial estate and I will be the only person in our building. So the streak may continue into Thursday. Hang on a minute Thursday is Valentines Day. Wow am I going to be seriously cranky by the 14th…

Anyway we have started a little wager, who will break my streak. I’ve gone for a random cold caller with my first words being “will you just bugger off”. Son is going for the postman or randomly a lost Donald Trump.

I will keep you posted…..

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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.

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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.

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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…..

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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.