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).

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…..

No more than four words

We tried a new game a few hours ago. We had no more than 4 words to describe someone. It initially started as purely a wrestling game but spread out into the wider world. It sounds easy but I found it extremely testing. Just shows how verbose I have become.

Anyway it started off with Wrestling.

AJ Styles – Son (Best Wrestler on Earth), Dad (He has lovely hair)

Becky – Son (The Man) *** that’s on all her T-shirts

Undertaker – Son (A bit creaky now) Dad (Older Than Me)

Edge – Son (Best Entrance Music Ever)

Kane – Son (Still my favourite)

Brock Lesnar – Son (Paid Too Much) Dad (Scary but very boring)

Vince McMahon – Son (Likes Pretty Women) or (Likes Big Sweaty Men)

Then we went outside the Wrestling world

President Trump – Son (Sneaky and not nice) Dad (Plays too much golf)

Stephen Hawkings – Son (Science GOAT) *** GOAT stands for Greatest Of All Time, Dad (Appeared on The Simpson’s)

Einstein – Son (Science Second GOAT)

Homer Simpson – Son (Dad)

Hillary Clinton – Son (How did she lose)

Barack Obama – Son (Very Nice Clever Man) Dad (Can We Have Him)

Bill Clinton – Son (Cheeky and Naughty)

Bono – Son (Dad hates him) Dad (I hate him)

Gordon Ramsey – Son (Never heard of him) Dad (###@### f### off)

Bear Grylls – Son (Too mean to Bugs)

Squidward from Spongebob – Son (Dad)

PewDiePie – Son (YouTube Sensation) Dad (Who ???)

JK Rowling – Son (Made Money from Magic)

Patrick from Spongebob – Son (Dad)

Messi – Son (Footballs GOAT) Dad (Sign for Newcastle Please)

Arnold Schwarzenegger- Son (Terminator) Dad (Get Into the Chopper *** with an Austrian accent)

David Attenborough – Son (Mr Wildlife, Legend)

James Bond – Son (Drinks, Women, Guns) Dad (Sean Connery)

Prime Minister May – Son (Useless and Not Nice) Dad (Worst Ever PM)

Angela Merkel – Son (Proper Leader) Dad (Better than ours)

David Cameron – Son (Useless but almost nice) Dad (Caused this Brexit mess)

David Beckham – Son (Overrated) Dad (Never Liked Him)

Bill Gates – Son (Very Clever Very Rich) Dad (No More Updates Please)

Put in my place

The directness and purity of autistic children is a blessing. It certainly puts you in your place….

I told a really bad joke and got no reaction. So I told it again but this time started to explain it.

“Dad just stop. You don’t need to repeat it. The greatest artists and musicians never copied their masterpieces, they moved on to new ideas. Never repeated themselves.”

After a few seconds of silence

“Dad in no way am I saying you are a great artist or musician. The phrase can apply to others as well”

Enlightened by a flapjack

Son has always had a healthy appetite, but unlike his dad it doesn’t seem to impact on his body shape. At his last school (with less than 50 kids) lunch was very relaxed, with room to spread out and time for him to have several helpings.

At his new school meaningful intel about the practicalities of the school day has dried up. No feed back from school and a son who often wants to quickly forget about the traumas of the day. So I had no idea how lunchtime was going. I payed the school meal bill online and assumed a balanced diet was being consumed. He never complained about it so it must be ok – that’s my 479th bad parenting example, complacency. I did notice that he had a remarkable appetite on his return. Often eating me out of house and home.

This week as I paid the online meal system I noticed by chance an option to view what the menu was. Reassuringly it looked pretty good. Then I noticed another well hidden option which was tomview what he had actually selected. The selection was very enlightening…

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5th Sept – Pasta Main Meal

6th Sept – Macaroni Cheese (very surprising as he hates this)

7th Sept – Flapjacks x2 (sweet granola bar)

After that every day has been Flapjacks x2 apart from 2 days which showed up as a Tuna Sandwich.

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By my calculations that’s 184 Flapjacks since September. Bugger – that’s my 480th bad parenting example, must stop swearing.

So it was time to have a more in-depth fact finding chat with our Son. Apparently on the first two days only his year group was in school. It was fairly quiet and he enjoyed his pasta dish. On the second day he thought the sign said pasta meal and was a bit miffed when he found macaroni cheese on his plate. After those two quiet days school lunch has become a nightmare. Too many kids, too little space and limited time. For a main meal you have to queue up for about 20 minutes. After that you need to circle round the dining area waiting for a space to become free. A bit of a nightmare for anyone, a lot of a nightmare for someone with Aspergers. To jump the queue you can opt for either a Sandwich or Flapjack or icebun. Queue jumping it was then for our son. I was puzzled why he broke his sequence of Flapjacks heaven with two Tuna Sandwiches (especially as he doesn’t really like bread). Apparently they had sold out of Flapjacks….

I have now spoken to school but they can do little, just too many kids to feed. I suggested staggering the lunch starts but apparently this cannot be done logistically. Really!!. They will however think about some dyslexic friendly food signage.

So I’m not sure where this leaves us. Packed lunch is not an option. These have to be dropped off at another part of the school prior to the first lesson and this would just provide more school stress for him. He’s never going to queue. So it’s Flapjacks, sandwiches or go hungry. I suppose at least he is eating something- 481st bad parenting example, it’s not a healthy option. Will just have to ensure he gets a good breakfast and have plenty of food in for his return.

One last thought.

After our conversation he asked what was for tea.

Rather sheepishly I replied

“I baked a fresh batch of Flapjacks this morning”

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For a different and far more astute take on the autism school lunchtime trials please read Robyn’s great post from earlier in the week.

Made up

Today I was thinking about how nice it would be to have some colour in the garden again. I tried to picture some flowers. The flowers I could see in my mind were last years plants. Couldn’t imagine any new flowers.

Our son’s school does ask the kids to do an awful lot of homework. Too much really. One of his assignments was to start putting together his autobiography. Red flag alert. This is a recipe to just reopen old wounds. Son was equally apprehensive. So I contacted school and expressed my concerns. We agreed that rather his own biography he would come up with a fictional one. As his hand is still not fixed I was going to scribe his thoughts.

“Ok I am in my 70s”

“I was born in the South of England”

Good start.

I like music”

“My best friend is called Keith and he also likes music”

“I have another friend called David who I often share clothes with”

Not sure where this is going.

“I joined a band with my friend Keith”

“We played our first concert in 1962”

This sounds a bit like Mick Jagger.

“Well it is Jagger”

No you can’t use him, it’s supposed to be made up.

“Oh, Ok.”

“I am middle aged and I am a lecturer”

This sounds more like it.

“My father is very religious”

“I am an archaeologist”

“I’m scared of snakes and I am also an adventurer”

By any chance does he go looking for the Holy Grail.

“Yes, how did you know?”

Because its Indiana Jones. You can’t use him.

“Why he’s made up”

You just can’t use him, make one up about a child not a famous adventurer.

“Alright can I be an 8 year old boy”

Yes much better

“I am a bit cheeky”

“I live with a large family with many kids. I have a really annoying older brother and uncle”

“I am always getting shouted at”

This will make an excellent biography.

“Every Christmas my family go on holiday but they always forget me, so I am home alone”

Deep sigh…. Fine you win, you can be Kevin….

What works

Anxiety, sadness and fear. Three words which unfortunately are too often near the top of our household vocabulary. Along with fart, burnt food, turn the music UP, where’s the remote, sorry I forgot and Dad you Muppet.So what have we found that actually works for both of us. Here are some of the winners.

5,4,3,2,1

We have found that this technique is really good at taking the edge off panic attacks. It doesn’t work on any underlying problems but buys some time. At the first sign of increased anxiety:

Think of 5 things you can currently see,

Think of 4 things you can currently hear,

Think of 3 things you can currently touch,

Think of 2 things you can currently smell,

Now do 1 large breath.

The Sweetie Jar Oracle

If our son is going through a period viewing the world through unhappy filters we start the Sweetie Jar Oracle. Find a large clear jar and a bag of brightly coloured sweets. Not sure about the rest of the world but in the U.K. smarties, fruit pastilles or Skittles work well. Sort out say the red and yellow sweets. Then identify one of the colours as good and the other as bad. Then over a period of a few days, maybe a week start to fill the jar with the appropriate coloured sweet every time a good or bad thing happens. After a few days hopefully you will see more good sweets than bad sweets. This usually convinces our son that although bad things do happen, good stuff happens more frequently. You can then eat the sweets….

Good Memories Store

We have an old small suitcase which we use to store good memories in. It’s full of old photos and handwritten notes. Every time we remember a good memory I write it down and put in in the suitcase. When times are bad we can then dig out the memory store and hopefully receive an instant boost to the soul. Has the added advantage of making sure you don’t forget those all important wonderful moments in time.

YouTube

Just losing himself in a YouTube documentary works somedays. I remember one occasion when he had an awful day at school but after 45 minutes of YouTube watching he was a happy little bunny. Worryingly he had found solace in documentaries about Caligula. What happened to Peppa Pig…

Wheelbarrow Train of Pain

Talked about this in a previous post. It stops my sudden urge to punch the wall with frustration. Basically load up a wheelbarrow with heavy stuff then push it round the garden. The number of circuits depends on the severity of the frustration.

Lego

Found that building a Lego set really helps take our son’s mind off his anxieties. It’s also good for his fine motor skills. It’s often frustrating for me as it just reminds me that I never got round to buying the Star Wars Death Star Lego set. Now it would be cheaper to buy a real Ghostbusters Proton Pack and get Bill Murray to personally deliver it to us.

Trampoline

Almost everyday on his return from school our son heads for his trampoline. 20 minutes later many of the frustrations of the day are put to the back of his mind.

Late night dog walking

Walking the dog never really helped our son. He was often too concerned about bumping into others. We would be having a happy conversation but suddenly someone would appear on his radar and he would be lost to anxious social thoughts. Almost by chance we then found the delights of night time dog walking. At night no one is about in our village. We have the fields and lanes to ourselves. Now it has become an excellent stress reliever. We frequently use the walks to plan out in detail the next days schedule.

Bad things league table

Every so often we run the bad things league table. We both list all the things worrying us. We then work together to rank them in order of how much pain they are causing us. Points are awarded for the severity of the issue, it’s frequency and how difficult it is to solve. It quickly identifies the stuff we need to focus on or prepare for. Because it’s done as a league table our son finds it easy to talk about and work with. For the issue which is the league winner we then spend a few minutes working out a couple of actions which might help knock it off its top spot for the next league table.

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One of the activists 100% guaranteed to raise our spirits will feature in the next post…

Bereavement and Aspergers

Death is inevitable but so so tough to comprehend. It’s hard for a grizzly mile worn traveller like myself to cope with, what on earth is it like for someone so young. Especially when it’s now 5 major deaths in 4 years. He’s only 11.

My son living with his Aspergers finds comfort in routine and orderly plans. Bereavement doesn’t fit into this ordered and planned world. Suddenly the world shifts, things are never the same again. This complete paradigm shift seems to manifest itself as shutdowns in his processing skills. His fine tuned memory becomes vague and unreliable. Concepts and principles become just random jumbled images. Simple tasks become complex nightmares. All he can think about is that the world and his happiness will never be the same again. Completely lost in this alien world.

Another aspect of Bereavement is a sensory one. Our son constantly fights to control and deal with all the sensory inputs flooding his body every second, every minute, every day ….. hardly ever receding. He has talked about death ramping all these sensory inputs up several levels. Suddenly the noise in his head is louder, he can feel the heart pounding, his skin is oh so much more sensitive, the unsettled stomach becomes a whirling vortex. He is trying to understand death while coping with this sensory storm.

When Bereavement occurs so many worries resurface for our son:

  • Fear of his own mortality. Suddenly every cold, every encounter with an unclean surface, every bump, every cough is a potential path to death.
  • Fear of his Dads mortality. No backstop, no second parent. Images of sad kids in cold foster homes like Harry Potter or strict Victorian orphanages flood his mind. How many movies have this as it’s premise.
  • Fear about losing special loves he will encounter in the future. Is the safest option to just shut the world out.
  • Bad things keep happening so they must be the norm in life.
  • Is it me. Am I to blame for this.
  • I just can’t find order and rationalise things anymore.
  • You learn to love, you learn to trust, then it is gone.

I think that final fear underpins everything. Trust in life for our son is hard to establish. He works so hard to build those bridges. Death smashes those bridges, breaks his hard fought trust.

We have started the healing process. Recommenced all the stuff which has helped in the past. But each time it happens the path to recovery becomes longer and more difficult.

The irony here is that this post is about our son (my only focus) and yet those last two lines (without thinking) are probably about me.

We now try to move on. The motto we have adopted is ‘each morning we dust ourselves down and go again’. Next post I will talk about some of the stuff which helps our son. More uplifting. More humorous. It has to be that way.

Sunday’s, Sunday’s

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

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

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

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

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

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

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

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

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…..