Priorities

The U.K. newspaper the Guardian ran an article today on how Special Needs Education is breaking Council budgets. It’s underlying argument is that as special educational needs are growing the Government is simply burying its head in the ground. As our son is one of the 354,000 mentioned in the article it feels very pertinent to what I’ve been waffling on about for months. We live in times when Austerity reigns supreme. Even the Special Education Budget is seen as an increasingly easy target for cuts.

The Government and our soon to be gone PM are very keen to stress that money doesn’t grow on trees. But surely it does. How else can you explain these little facts.

  • When the current government failed to secure a majority in Parliament it needed a new friend. Friends don’t come cheap. The Government found an additional £1Billion in funding for Northern Ireland budgets which was enough to buy the support of the DUP party. Basically money appears if it means keeping the PM in a job.
  • The Government decided that due to Brexit we needed more Ferry capacity. It unbelievably awarded a £14M contract to a company that had no ferries and had never run shipping before. Basically £14M down the pan.
  • £14M wasn’t enough for this Government so they decided to ignore Procurement Rules in the award of the Ferry contract to a company that doesn’t have any ships at all. So they got challenged by another company. To avoid an embarrassing trial the Government paid another £33M out. That’s a lot of money for no Ferries especially when Brexit was delayed so we didn’t need them anyway.
  • Not quite finished yet with Ferries. The Government paid just under £1M to have Private Consultants assess the viability of a Ferry Company that had no have Ferries. You couldn’t make this up.
  • £67M per year spent on the Royal Family.
  • The Government spent £13M on consultants over two months in a failed attempt to get MPs to back the PMs doomed Brexit proposal.
  • Over £2B has been spent on planning for a no deal Brexit.
  • The Government spent £4M on advertising to try and promote its discredited Universal Credits Policy.
  • Every year taxpayers fork out just under £1M for the PM to use the Chequers Country Estate.
  • The previous Government cut the very highest tax rate from 50% to 45%. This has cost over £8.5B.
  • The Government spent £9M on a leaflet promoting the dangers of Brexit. Now essentially the same Government is promoting the benefits of Brexit.
  • Money is tight but the Government found £55Billion to essentially build a vanity high speed train set through some of our countries finest countryside.
  • £14Billion to build another runway at Heathrow. Bugger the environmental costs. A policy so mad that even the king of buffoonery Boris Johnson said “I will lie down in front of those bulldozers and stop the construction of that third runway … Heathrow is just undeliverable, and the sooner we face that the sooner our salvation
  • The previous PM wanted his own Air Force One. So we spent £10M on one. The funny thing is that Cameron only got to fly on his plane once before he resigned.
  • Although money doesn’t grow on trees money was found to put adverts on vans and in newspapers telling potential illegal immigrants to Go Home. They then found another £200000 to pay for a study to show how good the idea was.
  • Every year Taxpayers are paying £3.7M subsidising our MPs and Lords food and drink cost when they are in Parliament. I’m still waiting for my food and drink to be subsidised.

I could go on an on but I hear you cry no more.

So the bottom line is money is available to the few when it’s needed. Sadly that does not apply to the 354,000 kids with recognised special educational needs and the countless thousands who fall through the system.

We live in hope of change. Unfortunately hope or change is not the middle name of the two chaps competing to be the new PM. They live in a different world

  • Jeremy Hunt regularly earned dividend of over £900k per year on top of his Cabinet salary. He later sold a company which earned him £15M.
  • Boris Bozo Johnson said that his cabinet salary of £141,000 was not enough for him to live on….

So no hope here then. But one day a revolution will come. We will start to get our priorities right and our society will start looking after the many and not the few…

That’s probably got me blacklisted on the American Visa system now and will certainly have pissed off several million in my own country…..

Hot Air

Not a sight you expect at 7.30am when you go to see what the dog is barking at. Makes a change not being the main source of hot air in the village.

The school holidays have officially started and it’s raining. Happy Days. Still rain means more movie time.

Last Saturday we watched Fantastic Beasts and Where to Find Them. Call us both Philistines but we preferred this to any of the Harry Potter movies. I never really warmed to Harry Potter – often thought the movie series would have been improved without him. Is it bad that I found myself siding with whoever was fighting against him. My version would have seen him bumped off quickly then Hermione, Ron and Neville taking the good fight forward through the rest of the franchise. That’s probably explains why J K is super rich and I’m not…..

Anyway I really warmed to the main wizard in Fantastic Beasts. Way more interesting. Son also really liked him. After about 10 minutes of the movie son said

Well I think Newt has Aspergers. The way he stands, minimises his eye contact and talks is so Aspergers. He clearly finds the human world alien and has really special interests.

Later he said

I like the way the film doesn’t hide it or make a big issue of it. He is clearly the most normal character in the whole film. He is just nice.

I have to say the thought had already crossed my mind. Later I checked and although JK hasn’t referred to it Newts actor has basically confirmed this. If that was the intention it was handled brilliantly. Aspergers does not have to mean Arrogance. Aspergers does not have to always involve belittling others. It does not have to be about being Patronising or speaking in a condescending way. It was also definitely refreshing NOT to have the Aspergers person portrayed as the Sociopath.

School report

I managed to find a kindly Bee who stayed still long enough for my ancient mobile phone to crank its focus into operation. Let’s call the little fella – Stanley. Let’s hope Stanley is safely tucked up in a dry bed. Within an hour of the photo the heavens opened and it’s pouring down. Two days before our kids break up and the weather threatens to go distinctly wet. Every year it seems to be a dry and warm spell for the last few weeks of term and then ….. Perfect timing.

I wonder if Stanley is any good at explaining the year end school report. In my day you got a little report with a hand written note for each subject with a grade from A to E. A meant that you were either the Headteachers illegitimate child or you had discovered a new chemical element. E stood for ‘Dads going to kill you when he reads this’. We only had one teacher but she changed her handwriting for each subject – maybe that was to make the school look like it had so much more teaching resources. The teacher comments had an Orwellian edge to them. Looking back at the reports you can see such classic comments for me as

Like most of the class he could do better.

He is a really good goalkeeper but he has quite small hands.

His attitude in Biology has been excellent only let down by him being sick over the teacher during a taste testing experiment.

He has absolutely no aptitude in French but he is keen.

His Space Rocket painting was so good it was displayed in the local library. But he needs to be much quicker and not just paint rockets.

I never had the heart to tell the teacher that it wasn’t a space rocket – it was a fishing boat. Even my art career was based on a lie…..

One of the most understated teacher comments was for a lad in our class who lived 3 doors down from us. The teacher said of his behaviour – ‘he has largely behaved himself with one or two blips’. Blips – the kid got arrested for burning down the village hall and trying to start a fire under the headteachers desk…

Anyway we move forward many years. Even after several coffees I haven’t the foggiest what our sons report is telling me. No helpful comments for each subject. These have been replaced by an apparently random set of grade letters and numbers – 5B 6A 4C …. No code explanations are provided. Is it just me being thick….. You also get an expected performance level at the end of the Key Stage. Bizarrely the subject he is best at gets the lowest performance level. It does feel like the report is more an instrument for meeting Government Targets rather than helping the child or parents. He also got 4 commendations including one which is not a subject taught in his year (we think Business Studies is probably Science). Must say that his really nice Form Tutor included some lovely comments – such a shame she is leaving.

I’ve given up trying to understand the report. Tomorrow I might phone the school up for help or I might just go and find Stanley. Speaking to Stanley will be far less embarrassing. Good job parents don’t get end of year reports.

Sunday night Kissing

Kissing is something which died when the world changed. Well anyway for me. But Sunday Night Kissing is still just about possible.

Last night we went to see Kiss perform their last ever English concert.

It was loud. It was cartoon like. It was larger than life. It was ridiculously full of explosions. It was Rock and Entertainment at its best.

Unbelievably I noticed a young chap stand up without prompting, start dancing, shouting, singing and clapping. That’s a first. Thankfully he has more rhythm than his Dad.

I have to say music has been a lifesaver. It’s always been the one constant. It wasn’t embarrassed when I struggled with depression. It didn’t turn its back on me when death came calling in 2016. And it didn’t batter an eyelid when Autism came a calling.

Yes Kissing is a memory. No more Kiss concerts for us. But we have precious memories.

Music is an unwavering friend who has embraced our son. Thank you Kiss. Thank you Rock. Thank you Music.

Brevity

If I tried to describe these two photographs I suspect I would waffle on for two or three paragraphs. Vibrant colours. summer, natural, wild, rugged, course, memories, wildlife, whistling wind, pastel greens, deep reds, rebirth, life cycle, arcadian , sustainable farming, ruminative, pain of war…..

And when I asked our son his description would be

Flowers in a field”

You get the picture I waffle and he speaks with brevity.

It was an interesting power struggle at school this week. English was all about informal forms of communication. In particular how to write postcards when on holiday in Spain. Clearly the teacher was looking for postcards in the style of Wordsworth, Keats or Shakespeare. Encouraging the use of words like Majestic, Glorious, Wonderments, Shining, Gleaming, Culturally Enrichments, Golden, Redolent, Effulgent.

Son clearly was in a different narrative time zone.

1st Attempt. Hi. In Barcelona, look it up on the internet, Goodbye

2nd Attempt. Hi. In Pretty Barcelona. It’s got a great football team, Goodbye

3rd Attempt. Hi. Still in Barcelona it’s better than Madrid, Goodbye

Final Attempt. Hi. Barcelona is still in Spain and it’s still better than Madrid. Will phone you on my mobile so not sure why I’m sending a postcard. Goodbye

Luckily the teacher could see the funny side. She could also see the impact of Aspergers and Dyslexia here. To him a stunning deeply evocative blood coloured red flower is in fact a Pentas lanceolata. His bottom. line is let’s just get to the point and less words mean less Dyslexia struggles. Can’t argue with that.

Eyes wide open

It’s amazing what you find when you open your eyes.

Another application for additional support. This one was a long shot. Additional funding to provide some specialist support in school for our son. Turned down.

Same line. He already has funding (the maximum available with an Education Health Care Plan) which allows him to take up his place in school. The funding goes into the general support budget which funds the school wide teaching assistant system. Plus he’s doing so well without support.

The fight goes on.

Then speaking with his Doctor. Son is now starting to become too old for many of the health programmes focusing on autism.

The fight goes on.

It feels like the agencies have signed up to support our son while he is in school or college up to the age of 25. The agencies provide virtually no support now. They will continue to provide virtually no support up to the age of 25. Then they can officially provide no support after that….

Ultimately the agencies are just following Government policy and funding decisions. The current government sees austerity and cutbacks as essential for health and education. Yet they are happy to provide funding for tax breaks for the better off and bungs to Northern Ireland Unionists to keep themselves in power.

Nothing is going to change any time soon.

So the fight goes on. But one day the government will change and hopefully we will get one which governs with eyes wide open.

Ricky

Meet Ricky the newest member of the gang. He’s made an appearance before when he started burying his nuts in the lawn over winter. But now he has started coming for his lunch. Happily feasting next to the birds. He (or she) will be a welcome friendly face going forward.

We are just over a week from the start of the summer holidays. Six weeks of immersing myself in our son’s world. It truly is a privilege. A wonderful mind trip. Happy parent.

I bumped into a parent from his current school. They have the holiday mapped out. Immediately they break up they are going to a music festival for the first weekend. Then the kid is going on a football course for the first week. Then they fly out for a two week beach holiday in a popular Spanish resort. They come back and then the kid is off camping with the scouts. A couple of trips to fun parks and family barbecues are then followed by a family week in Paris Disney.

Asperger/Autism summer holidays can be very different to this. Ours is. For a start we are limited by finances. Our summer holidays are long periods of house lockdowns briefly punctuated with carefully selected trips to places without crowds. This means early day trips to places like Zoos – trying to cram as much in as soon the venue opens and leaving as soon as the crowds start to build. For his favourite zoo that means arriving at 9am and probably leaving around 10.30am. Trips to the cinema will be to the 8.30am screenings. Locations will be carefully planned so that he feels comfortable there. Walks will be in very remote and largely unvisited areas.

A trip to Switzerland would have been an option (he is comfortable there and the journey is familiar having done it a few times) but we just can’t afford it. Plus he is more comfortable going during quieter periods – April/October. And we haven’t tried it since his mum left us – will it ever feel the same.

So our summer holidays will be quiet and largely cut off from the outside world. That would worry me in the past. The real danger of becoming increasingly introverted over those weeks and losing any social confidence which I had struggled to build up. This year it doesn’t really bother me. Yes I might become more introverted but its not as if I have a full social diary. Introversion and isolation is the new me. I can focus on our son and see what adventures we can weave – I’m sure Ricky will play some part as well.

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….

Who let the numpties out

The world has too many numpties. Sadly too many mean spirited ones.

A self titled leading right wing thinker described Greta Thunberg as sounding like a modern day demon with her monotone voice and that apocalyptic look in her eyes. Spouting her dangerous cultish talk.

I’m not going to name the prat who said that. Let’s hope he just crawls back under his rock and disappears. Unfortunately we have members of our ruling governing party who publicly share that view. They can do likewise with that rock. They can keep each other company and I’m sure they will be happy together.

Let’s get this right and let’s keep this simple for the numpties.

Greta is a teenager with Aspergers standing up for what she believes in.

One of the common symptoms of Aspergers is although those on the spectrum may have a great vocabulary they may struggle to express themselves. Monotone vocal delivery, difficulty controlling voice levels, talking too fast or too slow and slurring words. This certainly applies to our son. It was more pronounced when he was younger. Thankfully we managed to secure some sessions with a Speech Therapist. Those sessions really helped. They started working quickly and it was good for his self esteem. This is unusual as often the therapy seems to take so long to see any meaningful positive results. Sadly it often feels like therapy for therapies sake.

We certainly picked up some things we could try at home

  • Breathing techniques. Breathing correctly is fundamental to everything we do. The argument goes if you can control your breathing you can relax and control everything you do. Take a deep breath then start to speak while trying to breath out slowly.
  • Singing to music. Find a room with some privacy. Play some loud music and just try to copy the singing.
  • Repeatedly keep saying out aloud some funny limericks.
  • Role playing. Watch some movies, find some interesting characters and then play act some of the scenes trying to mimic the actors lines.
  • Practice taking a few seconds to think of a line you want to say. Breathe then say that line. Then choose a different line and try again.
  • If you come across some words that cause repeated problems try to think of easier words to use instead.

And one exercise for us all. Let’s try to be more understanding. More aware of everyone’s individuality. That applies to everyone except for the mean spirited, narrow minded numpties. For them they can just sod off…..

Odd day

It’s been an ODD day.

Work warned me that today was likely to be beyond busy. Yet I didn’t hear a thing. Finally I was stood down with nothing to do. Not good for the bank balance but at least I could go for a walk

On the walk bumped into a few people but clearly being pleasant was not high on their priorities today. An encounter with one dog walker summed it up perfectly. Her dog ran up to me and jumped up. I bent over and gave the happy little dog some attention. When the owner arrived she curtly told me not to stroke her dog and walked off. Most odd. Then.

I got to my favourite hay bale.

It’s gone… The other bales are still there and it’s not even been moved across to join them. I sadly counted them. I’m going to miss that bale. Got quite attached to it. I wonder if the farmer will think I’m odd if I ask him where it’s gone.

On the way back home I stopped off at the local village shop. Here I bumped into a dad whose boy was at our sons last school. Almost straight away he said

I didn’t realise your son was Autistic. I only found out yesterday when it was mentioned at school. Has he just recently gone down with it”

I tried to explain that you don’t really go down with it. It’s a life long condition.

Probably explains why he always appeared a bit odd to me”

Fighting the urge to relocate this mans head from his shoulders I did bite back just a tad. Pointing out to him that it was a bit rich coming from someone who liked to wear his designer shades even when it was raining in winter. Someone who was the only parent who objected to the school sending the kids on a educational trip to the local mosque. Someone who demanded a teacher be sacked after he told off his son for cheating repeatedly at sports day. And someone who was a monumental d*******.

Needless to say we didn’t part on great terms… an odd encounter

Son came home to tell me that his class ran late so he only got 10 minutes for lunch as a result he didn’t have any lunch. Odd how no food for 8 hours can be seen as creating a positive learning environment.

The day finished off with a viewing of the Fighting the Family movie. The story of Paige the WWE wrestling star. After it had finished our sons on the spot review was

Paige is great. It is so sad that she had to retire at 26. The film was really good but oddly remarkably awkward in places”

Yes it’s been a very odd day.