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.

Earplugs

Keep getting asked about the edible ear plugs that appeared in the last post. The Earplug incident happened last year and was mentioned in the Vampires post.

Basically on the way back from a concert I got the munchies in the car. Tried to feel around for a sweet and came across something promising. Unfortunately that promising sweet was our son’s freshly used ear plug. Very chewy…

Laughing about this with our son this morning. Then we decided upon an invention to prevent this unfortunate incident happening to someone else. Why not have ear plugs that automatically self destruct when you take them out. Mission Impossible have been using that tech for years. What could possibly go wrong…..

Then son pointed out the obvious. Why stop people eating earplugs … just make them edible.

So off we went. What food could we use as temporary ear protectors.

  • Carrots – maybe the miniature ones could work. They might even do a bit of ear wax removal at the same time
  • Blueberries – right size but a bit squishy
  • Bake Beans – good size but maybe a full tin might be a bit of overkill
  • Smarties – would melt surely
  • Jelly Babies – maybe one or two ethical issues
  • Bread pieces – wouldn’t last two seconds with the local Seagulls. Plus I’ve seen Hitchcock little family movie – Birds….

Then son killed off the debate. Why don’t we just use miniature marshmallows. Same shape, same size and so much cheaper than ear plugs. When we see Kiss let’s see if we try them out.

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….

Weekly Terrible Poetry Contest

It’s time for Chelsea Owens Terrible Poetry Contest.

They really are great fun. It’s nice to do stuff well outside your comfort zone. AND it helps distract you from today’s worries.

Topic: Unusual ways to make money.
(No, prostitution is not that unusual. Thanks, Certain-Regulars-Who-Know-Who-You-Are, for wondering.)

Keep the Length as short or long as your muse needs, with an upper limit of 250 words. If you want to Rhyme, go ahead. If not, I won’t stop you either. As always, playing with rhymes is a great way to screw up a potentially lovely poem.Most of all, make it terrible! Elon Musk, Bill Gates, Steve Jobs, Warren Buffet, and even the POTUS himself need to take a full five seconds of their precious time to stop, look at you, and shake their head in disbelief. Rating? PG or nicer, as usual. You have till 8:00 a.m. MST next Friday (July 12) to submit a poem.

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

Rupert likes to make shed loads of money.

Not bad for a lad who comes from a land which is so sunny

A man who set up his own news corporation

Who still had time to build a TV station

Making so much dosh he thinks he owns your nation

So how does our Rupert make his cash

Promoting fake stories with panache

Filling his TV channels with balderdash

Getting you to watch TV shows filled with advert trash

Rupert also likes to control the news

He wants you to sign up to this perverted views

Making sure his political buddies get friendly interviews

His opponents suffer as fake news spews

Moody

Moody skies. In the distance a Buzzard is being chased off by two Crows. That sort of distance shot is way beyond my old mobile.

I keep saying it but grief is really pesky. It likes to sneak up on you. Even after more than two years it still does. Of all the sneak attacks one always hits the hardest. It’s when you momentarily forget what has happened. You only need to forget for a few moments and then wham – grief slaps you in the face.

The same thing has happened time and time again to me. I’m driving towards our house. I look up and see no car sitting on the drive. I immediately think that I’ve beaten my partner home today. That means I can ….. Then it hits you. She’s gone. It’s the most soul destroying feeling. Absolute desolation. The shock literally takes your breath away. You then have to enter a house which is so full of memories. It really does take quite a while to get yourself back on an even keel.

It happened again today. No car on the drive. Beaten her home. I can get the housework done before she’s back. Maybe even get a mushroom stroganoff on the go. Her favourite. Then it hit me. Bugger… Even with a mad dog the house seemed really cold and colourless. So empty. It wasn’t supposed to be like this.

But it is. Got to make the best of things. Just have to accept that grief is the new reality. But I can keep going. I try to see grief as sitting by the seashore. Sometimes the tide comes in. Often the waves are tiny and you hardly notice them. But every so often the tide comes in with force and the waves crash over you. It’s a full on storm. But I tell myself to breath and eventually the tide has to retreat. It really has to. And I do realise that I am so fortunate. I have a purpose to drive me on. Give our son the best childhood possible.

But still I could try and hire those two birds in the photograph. Maybe they can keep watch for grief and then chase it off when it comes hunting. That really would be something to crow about.

Oh come on…

Stood watching the sunset. Two thoughts crossed my mind.

One… what a stunning sunset. Developed without warning and only lasted a few minutes. It’s the sort of sunset that would have made my partner so happy.

Two… bloody hell my fingers hurt.

You get towards the end of the school year with the once extensive school uniform reserves drained to drought levels. Down to one of each item and they have seen much better days. Sizing is probably about two sizes to small and really they are just a collections of holes held together by a few resilient fibres. Just got to make them last two more weeks. That reminds me – I had better start saving for next terms uniform replenishment. Bet that’s cheap!!!

It maybe only two weeks but you can almost see what’s left of the clothes disintegrating in the air. It’s time for drastic action. It’s time for emergency patching. Unfortunately sewing comes as naturally to me as veganism comes to Donald Trump. I am useless. Always have been, always will be. Up to two years ago that wasn’t a problem. My partner loved darning and out would come the sewing box with such glee. My mum was also an expert in the dark sewing arts. Those days have gone now.

So now it’s down to me. Houston we have a problem. So out came my partners sewing box. A result a couple of useable patches ready to go. How hard can this really be. So a fine looking needle was selected. Several different types of thread to go for. Helpfully each has a number 60, 70, 75, 80 – what the hell does that mean – is it size, age, weight, tensile strength. Let’s go for 60 as it’s black. We then start to put the thread through the needle eye. T***, f***, s***, b******, buggerations. I might as well of been trying to give a cheesed off Honey Badger a haircut. One hour it took me, one hour of my life wasted on that instrument of torture.

Then I started to attach the patch to the trouser knee hole. The sodding thread falls out of the needle. So we start again. Two coffees later we have a needle and thread ready to go again. Now the needle won’t go through the patch. What is it made of – bullet proof armour. Eventually I punch through but with so much force that the needle eye has embedded into my finger. Blood everywhere. After a plaster has been applied I continue. Not once, not twice maybe six times the needle struggles to get through the patch but once through it passes through my finger skin with such ease. In the end my fingers resembles Spongebob Squarepants’s backside. Holes everywhere.

But finally the job is done. The patch is secured and doesn’t look too bad. Quite pleased with that. THEN. Oh for f*** sake, oh come on!!!!

In hindsight it might not have been a great idea to push the needle not only through the front of the trousers but then through the back of the trousers as well. Great work. Now the left trouser leg is completely sewn tight at the knee. What’s the kid supposed to do – hop to school, pirate style.

Don’t think badly of me. After I unpicked the stitching I decided to stick the patch on with superglue. Let’s hope it doesn’t rain.

So yes it’s a wonderful sunset but my fingers are so much more redder…

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…..

A creaky world tour

I have been racking my brain for something to get my teeth into. I’m am trying out a number of Hobby options over the next few weeks but I have given the green light to one little project. A world tour.

How far can I get round the world on my exercise bike and on my dog walks. The miles (Km) will be recorded via my helpful bike computer and my mobile phone. Don’t laugh but will be using Pokemon Go to record the walking – might as well catch a few Pokemon as we go. Luckily for this project my exercise bike will have off road capabilities and will be able to traverse rivers. It might even be able to fly. Basically it allows me to cheat on the logistics sometimes. This project also has a big positive – it’s something I can do when our son is off school during the holidays

I’m not sure how far I’m going to get. Depends on my battered body, on my second hand and equally battered exercise bike, my dedication levels and how much my buttocks can take (not much padding on the seat).

Anyway let’s crack on.

Thanks to the bike and Pokemon Go we can check back over the last 2 weeks.

Bike

Week 1 … 75km

Week 2 … 100km

Walking

Week 1 … 24km

Week 2 … 35km

Where shall we start from. Let’s say York Minster. Dating from the 7th century it is one of the worlds most renowned cathedrals.

So after 2 weeks I’m getting off the bike in Peterborough. A city known for its 12th century cathedral.

Then it’s on foot to Cambridge. The famous university was founded in 1209.

So we set off again tomorrow and head towards the English Channel. Shouldn’t take too long as Kevin Costner when he was Robin Hood managed a similar distance on foot. “Tonight we will dine with my father” having just landed in Sussex. You do know it’s 200 miles old boy….