You don’t look like

Another cold and beautiful morning. Doesn’t look like the expected wet and windy weather forecast.

Robyn on her brilliant blog was taking about someone who played Death Metal music during a gym session and yet looked so UnDeathMetally. I remember a few years back going into a HMV record store and trying to buy a Hardcore German Death Metal CD. The young guy at the counter looked at me then looked at the cd and said “this might be a bit heavy for you”. I managed to stop him before he directed me to either the Country Music or Dire Straits sections. Clearly I didn’t look like a head banger. I should have warn my Motörhead Tour T-shirt.

I remember another time at work when a particularly gruesome Salesman barged into the office and asked to speak to the Chief Accountant. When he was pointed in my direction he walked up to me and announced “you don’t look like a Chief Accountant” and laughed. In an unusually sharp response I came back with “you don’t look like a person with an appointment” and proceeded to ignore him until he sheepishly left.

But apart from these two moments ‘not looking like something’ has not been applied to me much in my life. Well apart from this year. It feels like it’s been open season on me. The following have all been said to my face over the last 12 months

You don’t look like a vegetarian

– You don’t look like someone with depression

– You don’t look like that photo on your driving license

– You don’t look like your passport photo

– You don’t look like a boxer … the physio said this as apparently I had a muscle injury normally associated with boxing

You don’t look like your best pleased

– You don’t look like a single dad … said to me by someone in the village

You don’t look like someone who plays Pokemon Go

– You don’t look like an XL … No but is it a crime to like wearing baggy tops for training

It’s not just me. It’s a team issue this year

Your Son doesn’t look like he has Autism …. said by a teacher

You don’t look like a boy with your hood up you have girls eyelashes … this was immediately preceded by the longest and hardest Paddington Bear Stare by our son.

Your dog doesn’t look like he’s partly Cocker Spaniel

– Your dog doesn’t look like he’s partly German Spitz

– Your dog doesn’t look like he’s calmed down

– Your cat doesn’t look like he gets much exercise

These were all said very innocently and are rather mostly amusing. Some you scratch your head and think what on earth is a single parent supposed to look like. Some are worrying – too many still assume that if someone tells a joke then they couldn’t possibly be depressed. Then there are the ones which are breathtaking. An educational professional demonstrating such staggering ignorance of Autism. It makes you realise what a long way we have to go as a society.

More rain

And still it rains. And rains. And rains.

And still it rains at school.

French Homework is to complete a crossword. A French Crossword. Marks will be deducted for incorrect spellings.

Dad I can’t even do a crossword in English never mind French. I can remember the sounds but I can’t spell the words. The Teacher knows this but just says I have to try harder.

And we have more…

Drama Homework is to complete an acting related Word Search Game. Really. Very early on his previous school it was identified that he could just not do Word Searches Tables. The Psychologist who looked into this established that for some reason he was not able to visualise letters and collections of letters if they were printed diagonally or backwards. On top of this his dyslexia just made identifying words difficult. As this was stressful for him it was strongly recommended that his education did not use word based games. Fast forward a couple of years and his current school now requires him to do word searches as it’s the set task for the class.

I can see the point of a French Crossword for some kids but how is a dyslexic kid expected to complete this. Has our school system become so inflexible that we can’t just vary the teaching programme a little for each individual child need. Clearly not. The Government is committed to this Factory/Production line model of education. That’s for State Schools. Private Schools have more scope to flex the teaching programme. Unfortunately many can’t afford to go Private. But that won’t bother Boris and his buddies. As long as the chauffeur driven car turns up and the expensive wine keeps coming.

Ok I can see the point of a crossword for French for some BUT… What is the pigging point of a word search for Drama. I guess it’s all part of the Government’s drive to make every kid spell correctly the defined key words. Spelling is given a higher profile that actually understanding what the word means. Maybe I’m wrong. Maybe the best way to develop the next Orlando Bloom, Keira Knightley, Anthony Hopkins, Robin Williams, Whoopi Goldberg and Tom Cruise is to focus on spelling. Oh hang on a minute these have dyslexia as well. So no I don’t see the point.

We just set too many of our kids up to fail. They see other kids repeatedly praised for great spelling or neat handwriting while at the same time they are just told to try harder. How demoralising is that. A phrase you hear often is that kids with learning difficulties have to try super hard just to keep the perceived learning gap from widening. DAMM RIGHT THEY DO. Too many kids are forced through the same stereotyped classroom hoop. Never given a chance to demonstrate their unique skill sets as these are not in the areas deemed valuable by the Government.

Too many kids have been failed by our society. It’s not as if our society is particularly successful or sustainable on the back of this. This has to stop. When it does stop and we start allowing all our kids to grow – just take a few minutes to think how good this world will become. That is a hope worth fighting for. That is a hope worth voting for.

A very long time

I believe Marygate Landing was built in 1324. In all though years it’s seen many many things. So many passing boats. So many passing souls. And I understand as many as 4 sunny days in 785 years. Another day and another drenching.

So in the end it’s been a complete weekend lockdown. An attempt to soothe the raging anxiety which school and modern life creates in someone so young. Someone with Aspergers and Dyslexia who doesn’t in to the current factory schooling regime. A regime which will only get much worse if the current Government with its elitist dogma wins the election.

Last night we were due at a concert. One of my favourite bands. A chance to see them for the first time. But it wasn’t to be and in the grand scheme of things – it doesn’t really matter. When you experience grief. When you enter the world of parenting. When you become a single parent. It changes you. It changes your outlook on life. It changes your life opportunities.

Ten years ago I would have been really annoyed at the sudden change of plan. Frustrated at missing that concert. Not now. It is what it is. With little support you learn to appreciate even the smallest win. An hour reading. A good movie. A nice walk. A good run. Yes a night out with friends or a days climbing would be wonderful. But it’s probably not going to happen. It’s now over 4 years since either of these occurred. But you get attuned to the new life. Yes one day it would be nice but there are other more attainable wins to build your life around. The main one is blocking the system out so you get to see your son smile and be relaxed.

Yes because of circumstances you make countless plans. You try to create stability and repeatability. But in our world life happens. You might hope for the perfect day. But in reality how many perfect days come your way. Not many. So Plans change. Son was watching a video about Prussia and the famous quote from Helmuth van Moltke (Military Commander) came up

No plan survives first contact with the enemy

Today maybe this can be changed to

No parenting plan survives first contact with the outside world.

You learn to be flexible and pragmatic. A well thought out plan for a concert did not survive first contact with an Aspergers Meltdown. So we lockdown. So when the concert was due to start I asked the question “here’s the popcorn, what movie shall I put on”. Expecting something like Marvel End Game or Paddington and not expecting this response.

I fancy something a bit different. This movie has had great reviews and apparently is historically very interesting.

Oh he’s going for Apollo 13. I like that movie.

Can you see if you can find Victoria and Abdul. It’s about a friendship between Queen Victoria and an Indian Muslim Servant. It supposed to be very good and it shows how racist Victorian Society was.

Ok. Never saw that one coming. After much searching and after paying the £3 online rental we watched the movie. And it was really good. Son enjoyed it. I enjoyed it. It was a win. So the original plan failed but it worked out ok in the end. If we can keep doing that then we will be ok. If I keep remembering that actually I have a lot to be thankful for. Yes life will be a struggle but every so often wins come along. Just need to see them and grab them. Make the most of the many imperfect days. In the end it’s not worth relying on that perfect Yorkshire sunny day to arrive as you might be waiting a very long time.

Lockdown for the Numpty

It’s a real ‘Dowly/Chucking it Down’ type of Yorkshire day. Son has had a bit of a meltdown this weekend. Combination of tiredness and school. So we are on lockdown. Excluding the outside world for a couple of days. It’s unfortunate as I was hoping to go to see one of my favourite bands for the first time. Its not looking good. But it is what it is.

It’s also a deserved lockdown for a prize Numpty.

Last night I decided to look out for some Black Friday bargains. My list of required items, computer and a large hot drink next to me – off we go. After a few hours I was thoroughly disillusioned. Hardly any deals with many stores doing nothing. Well this is a waste Ot time. Apart from some cheapish school socks and a few pennies knocked off a pack of Top Trumps – nothing. Why are many of the stores having sales next Friday. Bizarre.

Hang on a minute it’s not the 29th yet.

What a muppet. Next week – watch me post that I forgot all about it.

Let’s spell out Monday

An entire weekend without seeing any evidence of other humans. No post. No phone calls. No dog walkers. Villagers hidden away in warm dry houses. On the walks not even one passing car or stray rambler. Helps when many of the roads are closed with overrunning roadworks or floods. Great fun in the pouring rain trying to play tennis on the pavement. Very cramped in an area probably not big enough for table tennis.

Sadly the relaxing weekend goes to quickly and dreaded school looms. A temporary change in school bus routes means more strange faces and much larger buses are running. No guarantee when the bus turns up. An absolute nightmare for a kid with Autism. If only that was the only thing.

Another heated discussion with school and the authorities. Both reassuring us that measures have been put in place which ensure compliance with government requirements and allows all kids a fair chance of performing well. Yeh right. Keep the Government happy – Sod the kids in effect…. Clearly certain parties need to lookup the definitions of all and fair. So this weekend our son’s homework basically is all about writing out three times all his spelling mistakes and unclear handwriting attempts. That’s going to expand his mind and boost his confidence!!

Then to cap it off he has to revise for an English Test. The test is an old school Spelling one. Learn 20 words.

Language

Presented

Sherlock

Through

Evidence

It’s the same spelling test for all in the class. No extra time or help for any child. Again maybe it just me and my cabin fever. If it is please just delete this post. But how is this fair. On what planet is this supposed to have any positive impact on any child with dyslexia and autism. Designed to fail AGAIN. For all the required words our son can give definitions for and provide alternative examples of how to use the word correctly in spoken English. But this is not important apparently. Not what school and the government wants. The focus is on getting all kids to just spell by learning parrot fashion a list of predefined words. If you can’t do this then you are low attainment. A failure. A faulty item.

Education is filled with really good, dedicated and caring teachers. Yet they are increasingly told how to teach and to focus on a narrowing range of objectives. Objectives not about the interests of the child. It’s all about Satisfying the Government. The agenda is that money should go to fund tax cuts for the rich rather than on unimportant things like school budgets. To make sure this happens Schools need to follow the tried and tested factory model. Increasingly large production runs which help drive down costs. Eliminate natural variations and reduce choice. Children just seen in terms of inputs and outputs. Push them through the system. Those who don’t fit are labelled a problem and discarded as surplus to requirements.

I will tell you where the staggering stupidity and the real problem lies. It’s in those leaders pushing this dogmatic crap and equally on those who choose to vote for them. Shame on you.

So we move on into another uncertain week filled with too much anxiety for someone so young. Let’s hope a few Muppet and Spider-Man movies can briefly lift the mood. Even a bit of no space tennis might help. But surely the countless thousands of children who suffer deserve so much more than this. The really do.

STICKMAN

The mad dog demonstrating the almost perfect combover. Maybe next time he will model the perfect beehive. Again I’m only jealous.

One of the things our country is rightly proud of is the NHS. Mainly free healthcare not dependent on the ability to pay. Once it was completely free paid for by taxes. It’s had some rough times. None tougher than now. A bodged reorganisation based on political dogma designed to open the service to extensive privatisation. Conservative austerity pushing services and staff to breaking point. Perfect for our leaders. It’s fits with the message that they are trying to push. ‘Clearly the service is failing, it’s not fit for purpose The only two things that can save it now are further privatisation and a move to an American insurance based system’. That’s what you will get if you vote in Britain for Johnson and Farage.

It’s becoming more difficult to see a Family Doctor. Many surgeries have a one or two week waiting list. Our Surgery operates a ‘phone at breakfast for an appointment that day’ system. It’s basically the same thing. I’ve been trying for a couple of weeks now.

The surgery opens at 8am so I started phoning at 7.55.

The surgery is currently closed please phone later.

Repeated phoning gets the same message. Then the lines open.

You are caller 39 please hold.

That’s progress over the last few days the best it’s started at was caller 49. You learn the system – anything over caller 40 means all the appointments have gone. Unbelievably I got an appointment and one with my Doctor.

Sitting in the waiting room is always an experience. Try to avoid watching the TV screens. In between advertisements for Care Homes the health messages are designed to convince you that that you are inflicted with every ailment and disease going. I once convinced myself that I had rabies. The person facing me is reading a paper with the headline “A million school kids being taught in class sizes of 31 or more”. Blood pressure starts to rise. The two gentleman next to me were exchanging accident details. One had broken his leg when a shopping trolley hit him near the frozen chicken section of the supermarket. The other chap had ricked his back bending over to pick up the TV remote control. A mum having a loud argument on her mobile while her little toddler whacked me repeatedly on the head with the STICKMAN book. “Your funny” shouts the toddler. I must have that sort of face.

Finally the Doctor can see me.

“Your Blood Pressure is Perfect”. REALLY. Clearly been assailed by a Julia Donaldson book is the new mediation – should be offered as a care pathway.

“Have you had any counselling yet. I did put you on the waiting list”

No

“How long have you been waiting”

Three years

*** Doctor now swears and goes into a tirade at the last 10 years of Conservative Governments ****

“I suspect the counselling isn’t going to happen. I’m going to give you some medication to try and help with your sleep. Come back and see me in January. But promise me that you will get a hobby and do it regularly. If you find anything that works then stick at it.”

So off I went to find a hardback copy of The STICKMAN. Any volunteers to give me a damn good thrashing…..

Mind wrestling

Yorkshire weather. Good running weather. Why would I want to run in dry warm windless conditions. Well that’s what I tell myself. Maybe I’m like Count Dracula. I would turn to dust in direct sunlight. I wonder what I would do if someone offered me the chance though.

I’m mind wrestling with something at the moment. My partner was an epic traveller. She visited so many countries. It was her extravagance. From her late teens she would save up during the year for one great adventure. Family and her adventures was what she lived for. The adventures only stopped when we became a family. Her dream was that when our son became older we could have adventures together. The two places she always talked about was New Zealand (would have been her first time) and Chile. She always said that we would all love Chile.

Then life happened.

I really want to complete those journeys for her. Our Autism World may preclude that. Circumstances may preclude it. But we will see. I most admit a part of me doesn’t want to do those trips. It’s just not right that it would only be the two of us.

Sorry I digress. Back to my mind wrestling. So many adventures and so many photographs. All sat neatly and well organised in carefully stored albums. Here is the dilemma. Part of me wants to do a retrospective photo journal. Tell her travel story. Her trip to the Soviet Union (gives you an idea of the timeframe) maybe would be a great starting point. YET another part of me recoils at the idea. What if she hates that idea. What if I’m breaking some unwritten bond of trust. It’s like having two competing voices on either shoulder each shouting differing viewpoints on life.

She’s not here anymore. What’s the problem!

YOU KNOW SHE WOULD SAY NO. I CAN’T BELIEVE YOUR SERIOUSLY THINKING ABOUT THIS!

But this feeling is something I’ve grown used to over these three years. On virtually every major decision I have these doubts. ‘What do I want to do’ balanced against ‘what would she do’. I try to see the world through my eyes and at the same time through her eyes. Problem is that we were two completely different characters. We each had our own unique take on the world. We would frequently disagree on the right answer. Often we would compromise. I’m still trying to compromise now. Yet I can’t replicate her thought process. I never could and I never will. I’m probably getting her point of view completely wrong. But I still do it.

Maybe other people do this. Maybe it’s just me sinking further into cabin fever.

So am I going to publish this travel journal? I don’t know. WE still haven’t decided.

Perfect timing

Perfect timing. The walking woolly jumper had been resolutely looking the other way. After a minute of waiting I gave up and took the shot. Just in time for the sheep to turn it’s head and briefly pose for the photo.

Perfect timing. After 4 hours of excruciatingly boring work I needed a run. But some days the mojo is just not there. After a couple of minutes I was on the verge of abandoning. Just outside the village a car was at the side of the road. The car had conked out going through a deep flood. After a few minutes with a push start we managed to get it going again. A quite reasonable run followed and I only remembered that I was going to give up when I was sat back down at the works laptop.

Perfect timing. I made homemade ice cream tonight. For some reason my vanilla recipe came out luminous yellow. The ice cream was served midway through the Monsters Inc movie. Unfortunately we were still sampling it when we got to the scene with the yellow snow cones and the Yeti. The immortal Yeti line rather killed off the taste sensation

“Oh would you look at that. We’re out of snowcones! Let me just go outside and make some more

Homemade Yellow ice cream is now banned.

Perfect timing. I was going to do a post about school. You can guess what it would have been like. Probably done a few of those over the last year or so. But as I started writing it a song came on the radio. Not sure who the band was but the songs basic theme was

Those with depression sit in silence. Feeling they are the only ones. Those who have suffered need to shout. So others know they are not alone. So they know it’s ok to shout to.

So here goes with a change of plan. Imagine I’m shouting to some Nordic Operatic Metal music.

I am a single parent. I’ve experienced a few too many deaths over the last few years. I’ve gone through phases where I’ve become too isolated. My personal confidence is shot. The upshot of this is that I have been to some really dark places in my mind. Scary frightening places. Yes I suffer from DEPRESSION. So if your reading this and you are suffering then please remember that your not alone. If you can then it’s good to talk. Talking or writing really helps. There is absolutely no shame in admitting your struggling. I struggle. Millions struggle. Let’s shout together. We can do this.

Come on it’s Friday

So like the weather we crash into the weekend. This photo was taken minutes before the heavy rain rushed in. It’s time to batten down the hatches for 24 hours.

For 10 brief minutes a delightful dry run in sublime autumnal colours. What followed was a long and protracted slog through a mud bath and driving rain. One step forward and two back. Seriously doubting if I could make the climbs which had been done countless times before. Soul destroying. No fun anymore just hard labour. Frigid isolation in this hostile environment. Doubting my sanity. What am I doing here.

It’s been a perfect microcosm of this week.

A week which has rapidly gone downhill. A long hard slog giving my soul a good kicking. Leaving my mojo and my confidence in tatters. Almost complete social isolation. Never ending pain from dental work. Failure to find solutions to home, school and work problems. Error strewn days. The house is filled with echoes of the past. Even blogging has been harder than usual. The words seem to be failing me. Three draft posts on Aspergers and one on Dyslexia deleted. Just not good enough. Not sure I trust myself enough to venture there. But then life interrupts my meltdown.

We have crashed into Friday. It’s also the start of the half term week holidays. It’s Halloween week. Remember the number one priority. The only one that matters in the end.

Give son the best childhood possible.

So it’s time to put my game face on. Work can wait until son has gone to bed. Halloween gives endless scope for creative fun. My problems will be pushed into the background by boundless youthful energy released by the school gates closing. I’m sure they will be back but just not this week. That’s not allowed.

Only one possible song to leave you with. Mr Alice Cooper and Schools Out.

Schools Out – Live

ADHD and Aspergers

Beckies Mental Mess this week has been doing a great job of raising awareness about (ADHD) Attention Deficit Hyperactive Disorder. I’ve just read Rory’s words which explain so well what it’s like to live with ADHD.

From here in this quiet part of Yorkshire ADHD is very much part of our life. It’s now officially part of our sons diagnosis. But it feels very much like a junior version. During the long and ever so frustrating diagnostic process which he went through ADHD was an after thought. It was missed. Never mentioned. Everything was lumped into Aspergers and Dyspraxia.

Then our Paediatrician changed. In his first meeting with our Son he genuinely seemed surprised that he could find no mention of ADHD on the records. A few weeks later it was added to the diagnosis. Why was it missed?

We where made aware that Aspergers in most cases goes hand in hand with other conditions. Everything seems to merge together to give a unique set of symptoms and personality traits. It is often difficult to unpick the individual conditions. Generally Aspergers and Autism are just used as overriding terms to cover a wide and complex set of interrelated issues. In our sons case ADHD was just missed. A specialist went through the original symptoms list. Of the 16 original listed symptoms which were defined as Aspergers related 7 were later changed to ADHD.

As soon as ADHD was on the medical record we were offered medication. Interestingly although our Sons the symptoms had not changed at all suddenly the addition of four letters prompted the option of drugs. We declined. Or should I say Son declined. In his words

ADHD hasn’t changed me. I’m still the same person with Aspergers. It’s just who I am.

Since we declined medication ADHD has never been specifically mentioned again by our Doctors. They have continued to offer behavioural therapy to try and ease the young Aspergers kid into this strange old world. Due to Government cut backs the therapy is becoming increasingly sporadic. Once someone gets past a certain age the health support basically dries up. But at least something happened. From an Education point of view basically no school interventions have occurred. No assessment of educational impact has been carried out. It’s the standard education package for all regardless of any specific needs. It’s so much easier to bracket individual kids as low attainment.

This is the shocking fact in education today. Certainly here in England. Specific educational help to those with a learning disability – some prefer to call it a learning disadvantage – is denied to too many kids in our society. Effectively they are seen as an expensive drain on resources. So much easier to write them off. How do we explain that to our kids. How as a society have we got education so wrong. We need to keep shouting as one day those in charge will listen.