Posted on by bereavedandbeingasingleparent · 67 Comments

Wow he’s got a funny shirt on

Dad are you going out in that T-shirt. I wouldn’t be seen in that.

The look the cow gave me I think indicated a similar interest in my attire. What is so wrong with a bright yellow T-shirt which has a photo of a reasonably well known TV personality on the front.

Don’t see a problem myself…..

On the walk we bumped into a family coming the other way. I had a quick chat with them but quickly realised son had pulled his hood over his head and was basically hiding behind a bush. So we headed off promptly. Social interaction just doesn’t come easily for him. Unplanned encounters just freak him out especially if they involve other kids. He hates the thought that people are looking at him. He hates having to make eye contact. He is never sure how close he should stand. He gets anxious when he has to stand still. He is convinced that only a few people get what he’s talking about.

I could tell this encounter had bothered him. Possibly he was a little embarrassed. He has spoken in the past about being a little ashamed that he could not handle chance meetings more confidently. All you can do is reassure him and tell him to be just himself. Being himself is just perfect. Counselling was having a bit of a positive impact on his confidence but that has dried up now. We work on breathing and anxiety control techniques. Occasionally I try to get him into carefully controlled new situations. The Holy Grail would be a club in one of his interests areas.

Hopefully one day he will realise that most of us are like this somedays. It’s called being human. But it’s now time to get him smiling.

“I hadn’t realised my shirt was so embarrassing that you didn’t want to be seen with me. Clearly it’s not a cool look. Good job they didn’t see my Peppa Pig pants”

Tell me you haven’t.

I think my smile gave the fib away and he started laughing.

Do you think they noticed anything unusual about me.

No too busy thinking what a pillock your Dad looked like. Shall we go home and see if we can find a couple of cider ice lollies.

I suspect we will be on lockdown at home for a while now. That’s cool. It’s what he probably needs at the moment. And anyway who needs the outside world. We have a trampoline, we have a football goal, we have a DVD player, we have a Peppa Pig DVD (maybe scrap that one), we have jelly and we have our imaginations. What more do we need.

Posted on by bereavedandbeingasingleparent · 96 Comments

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…..

Posted on by bereavedandbeingasingleparent · 54 Comments

Pranked again

Absolutely shattered. Tank empty, operating on fumes. Sleep walking. Zonked out. Giving Zombies a bad name. Too tired to sleep. Insomnia. Whatever you call it, it’s not a good place to be. Too many of us suffer from this. So much for progress.

Last night was a decent one really in the scheme of things. Three hours sleep. But just not enough. You know it’s going to be a long day when you go to make a wake me up coffee only to find when you sit down that you had already made one only a couple minutes ago. At least back to back coffees was a nice indulgence.

Thankfully I was alone at work. Not sure I could have managed conversation and spreadsheets. Today the spreadsheets got the best of me anyway. Nothing like looking at row after row of numbers to help wake you up – NOT.

One thing is clear – my tiredness makes me a sitting duck to stupidity. Driving back from work today I picked up our son from school. Soon the tiredness really started to catch up with me. While driving I fumbled around next to me for anything sweet and sugary. Unfortunately I completely forgot that I had not yet disposed of my son’s ear plugs from Kiss. Repeating the disaster from last year I again sampled the taste delights of used earplugs.

I was that tired I didn’t initially realise the humiliation. Just chomping away, just marvellous. The first indication was the hysterical laughter coming from next to me.

I secretly hoped you would do that again. You are often so predictable. So predictable I actually cleaned them first. See I’m nice that way.

Very kind of him.

Later I took the dog for a walk. No that’s wrong. This evening the dog took me for a walk. I was definitely in autopilot mode. We ended up in a random, new field. At least it was beautiful. I could happily have crashed here for the night. Not sure the farmer would have been that impressed with the sleeping trespasser. It took me a while to figure out how to get back home.

Anyway I’m back now. Hoping for maybe 4 hours tonight. That would be nice but I’m not holding my breathe. I will take any sleep, any at all.

Posted on by bereavedandbeingasingleparent · 53 Comments

Garibaldi

When I was a kid I loved a Garibaldi biscuit. Not had one in years. Sorry rubbish connection but beyond tired at present.

It’s been one of those days. Constant motion. Housework, Pre School Routine, Work, Dinner, Work. Lots of action, no sitting down yet achieving absolutely nothing. Even the dog walk up the hill lane just seemed to take longer today. The days culmination was forgetting about tomorrow’s school uniform. So panic washing cycle started at 11.30pm. Waiting for it to finish now. Then we are going to crank up the Tumble Dryer to its highest setting – equivalent to splitting the atom. Hoping I will get a semi dry uniform to iron by 2am. It’s been one of those days…..

Anyway back to my rubbish connection.

When we went to see Kiss the support act was a performance painter called David Garibaldi. Have to say he is definitely gifted. Frankly it’s just showing off just a bit too much when you can paint Elton John brilliantly, before a Rocket Man finishes and doing the painting upside down. But seriously the guy is a genius.

“Dad he could do my bedroom like a modern Sistine Chapel during one Spongebob episode. It’s taken you a year and it’s still resembles a building site.”

I bet Garibaldi isn’t trying to paint a masterpiece at 1am while he waits for what’s left of a school uniform to dry. But maybe the secret is to take the painters approach to time management. Pick a song then try to finish the painting job before it finishes. I wonder if that could work with housework and washing.

Posted on by bereavedandbeingasingleparent · 57 Comments

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.

Posted on by bereavedandbeingasingleparent · 46 Comments

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.

Posted on by bereavedandbeingasingleparent · 75 Comments

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.

Posted on by bereavedandbeingasingleparent · 53 Comments

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….

Posted on by bereavedandbeingasingleparent · 79 Comments

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.

Posted on by bereavedandbeingasingleparent · 98 Comments

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…