The Forgotten – Part 1

We were sat watching some YouTube videos of TV shows Rory (A Guy Called Bloke) had listed under Sitcoms suddenly morphed into another excuse to watch my favourite programmes.

Dad you do know most of the stuff you like on TV will mean nothing to most people. They will just look blankly at you. The worry is that I have part of your DNA. Thanks….

So it’s time to enlighten the world. Well a really small part of it…

The Indestructible Captain Scarlet trying to defeat his nemesis Captain Black and the Evil Mysterons. My favourite show ever. With strings or the much later expensive version. WE NEED A CAPTAIN SCARLET MOVIE.

Hectors House. The grumpy dog with a hunting gun.

With the earth under attack from aliens we need to respond with the coolest defenders ever. It’s got to be UFO.

Think Star Wars without the special effects or the humour. Think Star Wars without a budget. I give you Blake 7.

Bearded puppets with attitude means Michael Bentine’s Potty Time.

Magicians shouting ‘Size of an Elephant’, a scary letter box and a show dripping of awesomeness. It’s The Banana Splits.

Monty Python meets the stories of our dreams (or nightmares). One of the funniest TV shows ever. It’s Ripping Yarns.

Art

Dad I hate art at school. It’s so strict. I always thought art would be fun.

Art is not like that very often. It should be about just letting your imagination roam wild. It should be great fun.

Dad did you enjoy art at school then.

No hated it. We had a strict art teacher. But to be fair to her our school was a war zone. A 2B pencil or fine tip paint brush would be seen as a legitimate weapon by most of the idiots in my class.

My class is ok. It’s got some very nice kids in. Even the ones who cause all the trouble mainly get into trouble for really petty things. Like last week half the kids in the drama lesson got a negative because they forgot to bring a black T-shirt. The teacher said we needed one in the first lesson but didn’t talk about other lessons.

That’s too harsh. In my day you had to do something properly bad to get something like that.

Tell me about your mad class again.

We had someone who burnt the church hall down. Another boy was appalled when he found out someone else had been put on report for something he had done. He went off to sort it out. We assumed he was going to own up. That must have been plan B as he was caught trying to set fire to the headteachers desk. We ended up with two boys who went to borstal for robbery. Another boy who went to prison for attempted murder.

Are the two robbers those muppets.

Yep. While one of them broke into an off licence the other went to get a getaway vehicle. Unfortunately all he could find was an electric milk float. So a few minutes later they were trying to escape with the float engine burning up at 10mph with police cars in very slow pursuit. One of the muppets was on the back of the float throwing milk at the police. They didn’t get very far.

Shall I draw a picture about those two for Art. I still need to do my homework. Don’t won’t to get a negative.

No why don’t you pick something else. Something more arty. Why not a drawing of the farm. Or a flower. Something nice.

Ok, something nice it is then.

**So he disappeared in his room for an hour to do his nice masterpiece**

Dad I’ve finished. Nice. Is a bit of Tim Burton ok.

Autism and football

The Blueberry Plant is anything other than blue now.

That looks too like a Liverpool and Manchester United shirt for my liking. But it’s still better than that black and white barcode which your team wears. Watching barcodes run about a pitch must give you headaches.

That Football team of mine just gives me headaches period.

Son has set his heart on playing football for a team. Over the last few months we’ve tried to kick as many footballs around as the weather has permitted. It hasn’t been easy for him. Difficulties with coordination makes playing any ball sport a tough ask. That’s the issues facing many kids with Autism and Dyspraxia.

But there is hope. For a start dyslexia is not a barrier to sport. So many positive examples.

  • Kenny Logan – 70 Caps for Scotland (Rugby Union)
  • Scott Quinell – multiple caps for Wales in both Rugby Union and League
  • Lewis Hamilton – 5 time F1 World Champion
  • Magic Johnson
  • The great Mohammad Ali

In terms of autism it allows you to see the world in different and imaginative ways. This can be such an advantage in sport. Psychologists believe that some of the greatest sporting talents may be on the spectrum. They can see opportunities that other teammates just can’t pick out. It’s speculated that one of the greatest footballers on the planet (maybe the best) is on the spectrum.

Our son is tall for his age and very slim. He seemed the perfect shape for a modern style goalkeeper. So that’s what we started with. This also made it easier as we could just focus on his hand to eye coordination. For years he couldn’t catch a ball. But for ages now he has been bouncing a bouncy ball on our pavement. With hard work he now has really good catching skills. Then he started trying to catch a tennis ball while bouncing on his trampoline. Again after a lot of hard work he now is great at diving and catching one handed. So the next stage was to change the bouncy ball and tennis ball for a football. Quite quickly he managed to start catching two handed.

A small goal was bought for the garden and I started hitting some soft shots at

him. With hard work he can now dive and make some great saves. He’s now better than I was at his age.

But now he wants to see if he can play as a midfielder.

That would be cool dad.

This is a harder challenge for him as he still struggles coordinating his feet to kick a ball properly. But let’s see what we can do about that. Any skills he learns with his feet will be useful if he goes back to goalkeeping as these days they need to be comfortable passing and dribbling.

This year he has started going to the football club at school. It’s a steep learning curve. Suddenly it’s not just his dad, the dog and the ball. It’s lots of moving bodies, so unpredictable and loads of shouting. The shouting really disoriented him on his first session. He played one short game in midfield.

Dad I didn’t touch the ball but wow did I look good…. (said with a smile)

He went in goal and made some good saves but

I took a goal kick but the defender didn’t see me pass to him and the striker got the ball and scored. The teacher shouted that it was my fault.

Unfortunately too much shouting and blame goes with kids football in our country. Kids should be encouraged to try things, make mistakes and learn from them. Unfortunately too many are scared of making errors. You don’t make dreams come true by shouting at kids. At least son could see the wider picture.

Typical the other team scores and everyone blames the keeper even when it’s not his fault. What did you do when they blamed you for letting a goal in. I bet you let too many goals in.

Oh I just smiled, clapped my hands and immediately forgot about the goal. You move on and think about the next shot. (That’s not the whole story. I was a bit of a hot head back then and I would threaten to stick the ball up the backside of anyone who blamed me. But I won’t tell him that.)

So fingers crossed for the next club session.

Feel it

Autumn is coming I can feel it.

That anniversary is coming I can feel it.

Coming up to three years on the grief train.

The world flies past the window with no slowing down.

Unclear where I am heading or the purpose of the journey .

Captive Passenger on this locomotive with absolutely no sign of a conductor.

Who would have thought that after 3 years I would still feel so completely confused . Don’t get me wrong I am so lucky. I have a purpose to focus on. Give son the best childhood he can possibly have under the circumstances. Be there for him when he needs me for as long as that may be. My life is completely focused on our son.

And yet.

I realise that as son becomes increasingly independent (that has to be the goal) then I will need to start finding my own life again. My own self purpose. Will need the pesky grief train to stop at a new destination. But here is the conundrum. I’m driving the train, I’m the passenger, I’m the conductor. It’s down to me. I have to want that new destination to arrive and then I need to open the train door – and then decide to leave the train.

I’m using up valuable air. I owe it to the world to start living again. Eventually.

Dyslexia we are on your case

The dog is happy. His friends are back in the farmers field. And yes I still haven’t moved the shovel from last months gardening. And yes I still haven’t removed the two old Catherine Wheel fireworks from the fence. Wonder what the Guinness Book of Records listing is for the most old Catherine Wheels on a Yorkshire Garden Fence is.

Last night we had been talking football. Namely clubs which go out of business. Son was struggling with the economics of the process.

Dad. Basically with the billions and billions of pounds generated by football how can a great club like Bury be allowed to go out of business. It’s the economics of the madhouse. The rich get richer the poor get poorer.

Can’t disagree with him. Football is just a reflection of our society. Someone bleeds an asset dry then discards it. The person with money moves on leaving a scene of desolation behind for others to live with.

Dad which other clubs have gone out of business. Don’t worry Dad I will google it. How do you spell business.

Within a couple of minutes son is doing a pretty awesome job of reading out an article. Yes he was getting some of the words wrong. He had to ask me to read some words like ‘Maidstone’ and ‘Aldershot’. But I understood fully what was in the article.

He’s found a way of getting by. He can now read pretty accurately about a third of the words. Another third he can get part of the word correct which allows him to guess the rest of the word. And as long as he understands what the subject of the text is then he can guess the remaining words – fill in the blanks. It works. In his eyes he’s moved from can’t read to can ‘sorta’ read.

I fully realise that he is unlikely to have enough trust in the people around him in the classroom to demonstrate this at school. The teachers won’t have the flexibility to exploit this educational opening. But at least now rather than just guessing what text means he can have an educated guess. Even that will help his self esteem. It’s progress. Self achieved progress.

Hill

I don’t know what it is but I love looking at this one field. It just works for me. It also puzzles me – what is on the other side. I have no idea. One day I will check. Is that the best approach?

During the process of getting a diagnosis for our son he had to undertake a number of tests. He would only do them if I did them as well. So by de facto I was assessed as well.

Dad you do know Aspergers can run in the family. Mum’s side probably has. Your side is not so clear except for one person. You.

When I look back at my childhood I was more relaxed when I was on my own. I would often be found apart from the others in my class. I struggled to get my head round bondage language and emotions. Hated physical contact, hated being crammed so close to others. I made friends as I was good at hiding my anxieties. But I never could quite see the world like my friends did. Often seen as the odd but funny one. I was often quiet. I tried to hide a bad stammer which appeared when I felt uncomfortable. My school reports said ‘very shy’ – no I didn’t want people to hear my faulty speech. Initially slow at reading and with appalling spelling. Accident prone and uncoordinated – yet found ways to be good at sport.

All those probably still apply today. Apart from the physical contact phobia – do love a good hug.

So the tests what did they reveal. I remember a therapist telling me

It’s wonderful how you have failed some tests to reassure your son…

Don’t want to disappoint you but I didn’t have to try to fail the tests. It came all too easily for me. Not all the tests but many I did struggle with. I mentioned this to our son’s Clinician. When I told her which tests and how I struggled her take was that it would probably have been enough to trigger a diagnosis. She asked if I wanted to go onto the waiting list for Aspergers Assessment.

But that’s as far as it went. No interest in finding out one way or the other. Waste of valuable NHS resources. Not going to he,p me now. As son would say it’s just who I am. But maybe this is the reason that I have been able to get my head round Aspergers. Partner spotted the Aspergers with our son first but admitted I got my head round it instantly. She struggled. If it allows me to better understand the issues our son faces. That’s good enough for me.

We’ve talked about what’s over the hill. Son think it’s a panoramic view of the Vale. I thinks it the Yorkshire Area 31. A place housing our alien rhubarb technology.

Wise

Meet the Wise Old Elf. The undoubted star of Ben and Holly.

It was a show from our sons preschool days. It was never off the TV. That was probably more down to me than him. I could quite easily have spent my life watching this and In the Night Garden.

Now I’m not allowed to watch it that often. Although son finds a game of spotting which voice actors feature in both B&H and Peppa Pig. For example it’s the same voice for Peppa and Daisy.

Anyway as we took our mad dog for a walk we had to cross a field of cows. Our son was petrified of cows – not sure why. He would freeze if he entered a cow field. Dog walks had to avoid crossing them. But now we have managed to conquer that fear. When we see a cow it’s a race to be the first person to shout

Go on Wise Old Elf sit under the cow.

Years ago we watched an episode where it started to rain. The Wise Old Elf decided to seek shelter under a cow. And yes the cow sat on him. Someone almost wet himself watching that. It might not have been our son. Poor Elf. Same voice actor as Grandpa Pig from Peppa.

So thanks to a pompous accident prone cartoon Elf our son cured one of his fears. Sometimes solutions come in the most unexpected ways. That’s why it’s worth just persevering.

Son continues to struggle with his dyslexia. The difference is now the education system has dropped any pretence of trying to find ways to help improve his reading. They have just moved to the next stage – he can’t read, never will so lets lower expectations and any grades will be a bonus. Strange how the one person they have never asked about this is our son. He still wants to try so the fight continues. At home we continue to experiment with

  • Reading pens
  • Reading Apps
  • Shared reading
  • Coordination exercises

But that brings us to unexpected help. YouTube and Computer Games. They really do seem to help. Maybe it’s the visual nature. The themes. The combination of sensory experiences. Whatever the reason we have a kid who still struggles to read books yet he can navigate through games and the iPad without help. He can send texts without any help. Yes with some spelling issues but we all have them. That’s progress. Which makes the education stance so frustrating. We have to be realistic. Although he is improving the reading gap continues to grow with his peers. But that’s no reason to give up. The Wise Old Elf shows that.

Not a clue

I’m still trying to get my head round the fact that me wearing a In The Night Garden T-shirt is not a sign of me absolutely reeking of awesomeness. Apparently it just makes me sad.

Clearly I have missed the last 20 years of cultural development and I am fossilised, moldy and a dinosaur. As you can tell this post is about how dated I have become. The most obvious sign is how our son is talking a different language to me.

When I was young (about 3500 years ago) if you liked something you shouted ace. Apparently not anymore. I should in fact be shouting yeet. I ramped up my uncoolness as for a couple of days I misheard him and started shouting yeast.

A few months back son started referring to the worlds best footballer, Messi, as GOAT. I naturally thought that was to do with his beard or worryingly maybe something to do with satanism. Thankfully I finally discovered it was Greatest Of All Time.

Then I was shopping with our son and I kept hearing kids talking about buying new Rides. Trying to be with it I asked our son why so many kids wanted a new bike. The look I got. Apparently they wanted new sneakers.

Or maybe it was the time son was getting ready for school and I asked if he was sure that he didn’t need his sports kit.

Hundo P

I assumed he was referring to some new Manga character. Again I didn’t have a clue. Apparently it means 100% sure.

Today in my customary daily humiliation which is playing our son at FIFA 19 I was called a Newb. Harsh but my team had just been beaten 14-1. I am also a newb at Fortnite, Minecraft, WWE2K, Xenoverse 2 and Rainbow Six. Why is it that the only games I ever got good at have disappeared without a trace. I was the John Cena of the Donkey Kong world. The Yoda like playing beast in the BBC computer space game Elite. And don’t even mention my brilliance in Galaxian. But today that counts for nothing. Time moves on.

As I was putting the finishing touches to this rubbish a new blog notice popped up from Autism in Our Nest. Spookily Robyn had just blogged on a similar theme. Again she deals with this with far more insight than my sledgehammer approach will ever do. However it is reassuring that I’m not the only one out of step with modern culture.

Piggyback

Flowers in the garden. From this one angle our garden looks ok. Any other angle …. not so ok. A few years ago our piggyback obstacle course would start here. That was when we could say we had a little son.

A time creeps up on you when ‘little son or daughter’ does not sound appropriate anymore. I remember his Paediatrician measuring him when he was 8. Looking at our son and saying

Your not going to be a shorty like you Dad. Your in the 97th percentile for height at your age.

Thanks Doc. It’s like when a Football Coach said

If you were only a few inches taller you would be ….

I think the words he was looking for was ‘Thor like’ …. I will let you into a secret he actually said – of more use to me. I would like to point out that I am in fact 1/2cm above average height. In my book I’m tall…. Maybe standing on that book would help.

Over the years since then strangely I have not added much height. Especially if you forget about my brief experimentation with Gene Simmons Platform Boots. However our son continues to grow. I’m hoping to hang onto the tallest in our family title for a while longer. However I suspect our son will outgrow me potentially even before his thirteenth birthday. THIRTEENTH. How tall was our milkman.

Well today was another milestone. He can now use the exercise bike on my seat settings. The days of me having to lower the seat from his settings are just around the corner.

I am looking forward to my well earned piggyback rides. I think I’ve earned those. But today we have a challenge. The old obstacle course has been set. We will try to turn back the sands of time. I’m going to attempt to carry our son piggyback fashion around the garden. Do you think we should pre book an ambulance. Wish me look.

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

Update.

The challenge was accepted and Big Son was carried successfully around the course. One last quiz when I completed the task did I shout

  1. I am Thor, I am all powerful
  2. Yes course completed in record time. What a legend.
  3. F***** hell my back….

The squirrel needs to wait

Today I was planning to write about a squirrel. But at the last minute I’ve changed my mind. Maybe tomorrow…

The Guardian (one of the UK’s better newspapers) ran an article today about autism.

It’s upsetting’: the autistic music fans being shut out of gigs

Its a really interesting read and covers some really important issues facing those on the spectrum. If you have a spare couple of moments I encourage you to read it.

One thing the article is spot on about is that as you get older the support systems fall away and you seem to be left to sort yourself out. It’s so frustrating. You spend years fighting to get your kid diagnosed. If you succeed then you again fight to gain access to services. Hopefully you do get access and then suddenly your kids are getting to an age when the system decides to cut them adrift. It is just wrong.

The article got me thinking about our circumstances. Why does our son enjoy rock concerts yet often struggles in other crowded events. Having talked it though with our son I think we can almost answer that now

  • We only go to venues he knows and feels comfortable with. If we have to go to a new venue we go to see it in the daylight. If you speak really nice to the venue admin they will often accommodate a pre visit to allow you to acquaint yourself with its layout
  • He loves the drama, the noise, the lights. It’s a short fix of sensory overload on the same level as a scary rollercoaster ride. He controls it. If he’s not happy he knows that we can just get up and leave.
  • He loves the way you can wear whatever you want, do whatever you want to your hair, dance, sit, stand, sing, shout, drink, eat – yet no one seems to care. No pointing fingers. No funny looks. No questions. He feels like he can fit in there.
  • It’s so noisy. Too noisy to talk much. He is relaxed as he knows no stranger will talk to him. He still has an element of isolation.
  • He likes the thought that he is doing something which many of the other kids at school don’t do. It’s his hobby.
  • And finally let’s not forget that he just loves listening to Rock Music

Another point the article raised is whether you consider autism as a disability. Because of his diagnosis he is listed in the UK as disabled. Son hates that. He is clear – Autism is his personality not his disability. He does talk about dyslexia being his disability. His invisible disability. One which people see when they want to and ignore when he needs help.

Whether you want to call it a disability or not for me that’s up to personal circumstances. It’s called a spectrum for a reason. Everybody is different. It’s unlikely you will find two specific diagnoses which are the same. The article is right about access. It’s at best patchy and yes some simple changes can open up opportunities for more people on the spectrum. But it is difficult. We went to a Autism friendly hour which our local Toy-r-Us ran a few years ago. It was much more inviting and yet our son did point out that

If they want to make this completely Autism friendly they should allow us to book slots so we get the shop to ourselves without anybody else here”

One final point. The article talked about earplugs. They are essential but please manufacturers, given my unfortunate incident with one, can we make them edible….