Distraction

We are fast approaching the anniversary of losing our Son’s mum and my soulmate. Over the next 3 years we have managed to turn things like birthdays and holidays into celebrations. Yes some tears but more smiles. However this is the one anniversary which remains persistently grim. We’ve tried cards, flowers, local trips to her favourite places, eating her favourite food, looking at photos, letting off a balloon with a message on. Nothing has worked for us in shifting a day of tears and loss into one of celebratory hope.

Call me cynical but I guessed that the anniversary would also coincide with a car crash of a school return. Sadly right. So let’s try something else. A big distraction. Take our minds off the anniversary. So this year we tried to find something like a really loud concert or something similar to do on the dreaded day. But no luck – we couldn’t find anything on the day. We found something on the day before but we just couldn’t afford it. A similar story on other adjacent days…..

So the next best option is tonight. Yes it’s not perfect timing (bit early) but it’s the closest thing to the day that we can afford. The crowd might prove a problem with our son but he wants to give it a go. Fingers crossed that it works out for our son and it gives us a bit of distraction to that rapidly approaching day.

Dyslexia we are on your case

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

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

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

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

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

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

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

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

Burns

It’s hot. That’s Yorkshire hot. Which probably means mild in other parts of the world. My Dad would have called it mafting. It’s that mafting that even the Yorkshire Farm Machinery can’t cope. The photo shows the smouldering wreck of an unfortunate tractor with a badly burnt field. That’s a first on the dog walk.

Our Son does suffer from stress and overpowering fears. When he took one look at the burnt carnage he immediately panicked that our house would soon be engulfed in flames. It’s understandable as the field is less than a mile from us. I tried to calm his fears with words but with no luck. So actions are required. A mad Dad sat down in the blackened field. Look son my bum is getting a little warm but my shorts are not ablaze. Although it did demonstrate a point I should have thought the plan through a bit. Light grey shorts are maybe not that fetching when they have two buttock shaped black marks on the rear.

Although our son’s wild fire fear has been dampened down a little. Sometimes silliness works better than rational argument. It is still there and will be until normal Yorkshire weather returns.

When you have a child who suffers from these inhibiting fears it is vital that you try and keep on top of them. Working in partnership with school and health services is vital. At his last school they were usually on the ball. The teacher would catch me at the end of day or send a quick email to let me know if something had happened. If it was particularly significant school would phone immediately.

Unfortunately at his new school this has completely stopped. I fully understand that it’s a much bigger school and he has different teachers for each subject. But surely they still have a duty of care. I know speaking with the health professionals they say unfortunately most schools in they area are the same now. The close partnership working which was in place a few years ago has dried up. Again and again it comes back to the same reason. Government. As one Doctor said

Under the last Labour Government it was about the patient. Now the patient is a secondary consideration to income generation, competition and profit. Money is now king.

So increasingly it’s just left to parents, families and friends. The days of government for the greater good are over. Its all about self help and what the individual can afford. Must deliver tax cuts. It’s back to Victorian ethics. Days when democracy could be overridden by the powerful and the rich. A time when it was ok to send poor kids up chimneys. When hatred and discrimination was the norm.

Maybe it’s just me and I’m in the minority. Just my irrational fear. But increasingly my country is becoming alien to me. I hate what is becoming. Too many kids do not get the support they badly need. As a generation we have really messed up our priorities. Our leaders happily play fiddles while Rome burns. Or maybe we should now change that to our leaders go to comedy clubs while the Amazon burns.

To be or not to be

A beautiful delicate flower. Unfortunately it has decided to grow directly on the mad dogs preferred route to his watering zone. Given the unruly speed the four legged wrecking ball hurtles down this path it’s not the ideal environment for delicate beauty. Will it survive. Will it be crushed to a pulp. Who knows.

The new school year is looming. Will we start. Will we home educate. With all the emotions swirling around the house currently it’s not the easiest time to focus on crucial matters. But it’s decision time.

As our health service points out – The school system is failing our son. No additional support is provided in terms of his Aspergers. In terms of Dyslexia it’s the bare minimum. The assumption is that he can’t read, never will read and he will be shown how to use a reading pen for the final exams. Set low exam expectations and anything achieved is a bonus. Let’s be clear that’s not all the teachers. Some do see the potential. Unfortunately his biggest supporter has left this summer. It will be illuminating to see if the school move him up to higher sets this year. His effort, his behaviour, his results clearly highlight the correct answer. A number of teachers have also recommended that course of action. But kids with dyslexia are often just bottom classed.

Yet the evidence suggest that the school system is wrong. The Doctors continually state that it is far too early to give up on the reading. The work they do demonstrate much promise. A kid who has been written off now can read the subtitles which appear on movies. He can read text messages. Today he read a 2 line subtitle and only got one word wrong – minority. He’s achieved that progress without school help.

He needs a tailored approach to development. But to be fair the schools hands are tied by government policy and cutbacks. Tailored education does not happen unless you can afford to go private. Private like the entire Government has enjoyed. Home Education currently allows the parent to tailor the approach. You can develop an approach that best suits the individual. Unfortunately the government is keen to stop this as well.

The major obstacle to home education is having one parent. It’s trying to home educate and trying to bring in sufficient income at the same time. I just can’t make the numbers stack up. I just can’t find enough hours in the day (& night).

The bottom line is that I currently just can’t home educate and balance the books. Home education is the right option but it’s also currently an impractical one. So much frustration. If we still had two parents then it would be doable. It just feels like our son is being penalised again for something outside his control. That makes me angry. Very angry. What’s the line – you wouldn’t like me when I’m angry. Hopefully I don’t turn green. That anger fuels the desire to find a way. Our son deserves that. He deserves at the very least a parent who tries.

So in two weeks our son will return to school. Hopefully to a much improved education. But if it continues to fail then we will just have to find a way.

Me Me Me

Blue skies have been a rarity over the last couple of weeks. Strangely this photo is a few weeks old. Can’t remember the last time I had to water the tomato plants. If anything it’s more about trying to stop them drowning in the rain water. The mad dog is currently sat looking out through the back door. Yet when I open it for him he just continues to sit and seems to shrug – if you think I’m going out in that you have another thing coming. Other areas of the county have seen bridges swept away and a Dam almost breached. Wasn’t it only a few weeks ago I was talking about Yorkshire and temperatures in the 90s. Strange old summer.

We have largely been cut off from the outside world this holiday. The occasional and extremely brief trip to the shop but son has stayed in the car. Trip to a castle but at a time (and with the poor weather) that it would be largely empty. We are thinking about a trip to another castle, a zoo and hill walk – but these will be scheduled at the quietest times possible. This is how our son likes it.

But it does have a downside. Next month son will return to school. Small site with over 800 kids and adults. Its just not a natural environment for someone with Aspergers. It doesn’t help that within a few days of school opening it’s the anniversary of his mums death. It not easy for anyone but no kid should have to go through that.

Soon we will need to start the process of getting him as ready as possible for that dreaded return. We will have a few visits to the school. A word with the caretaker will allow a walk round the empty corridors. But that just won’t prepare him for so much noise, so many faces. So we are going to have to visit a few busy places. A couple of trips to a Supermarket. Maybe a visit to a popular museum – York’s Train Museum. It’s a balancing act trying to acclimatise yet not trying to unnecessarily spook him.

The other part to this is ME. It’s about trying to get ME used to people again. It really doesn’t come naturally to ME. Just look at that it’s all ME ME ME with me. I blame it on the rain.

Current mood – Dampish….

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.

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…

It’s a fight

Life is a permanent fight for survival. That applies to plants. It applies to humans. It applies to me. It probably applies to you.

For me it’s a fight on many fronts

  • Depression
  • Grief
  • Isolation
  • School
  • Government
  • Health Providers
  • Finances
  • Stereotyping
  • Body
  • Tiredness
  • Workload
  • With myself

It’s never ending. As much as you try you can never apparently win. Often your best hope is to just keep in the game. Survive another day.

But the key is to try and talk. Sometimes that is easier said that done. It is so easy for someone to get lost. Cut adrift from society. Friends drop off the radar. Those you love and depend upon are taken from you. That’s when talking becomes a rarity. A quick chat with the postman the closest you get to outside world discourse. It just isn’t enough.

But thankfully we have another weapon available to us. Blogging…. It opens up a new way to talk. To listen. To seek solace. To meet new friends. To feel connected again. To weep. To get angry. To think. Maybe even to laugh.

It’s not for everyone. You sometimes hear the criticism. You may get the occasional critical email.

So to those who accuse some of us of just being attention seekers. Wallowing in our own self importance. Inflating our egos. Maybe you are right, maybe your wrong. But frankly I don’t give a fig. I have more important fights to pursue and for me blogging is now a vital part of my defence system. It helps to prevent me veering towards some very dark places.

Yes it’s a fight but a fight better shared.

Parent worries

Something has been nagging at me all day. Just can’t get it out of my head. Even the two cows couldn’t shake the feeling.

I picked son up early yesterday from school. We had a doctors appointment before we set off for Manchester Arena. As we walked out of school we passed his class walking in the other direction. Half of the class completely blanked our son even though he said ‘Hi’ a few times to them. But that might have just been me my presence – that’s what I am trying to convince myself.

The bigger worry is that a few of the kids did speak to him. One kid asked if he was going home. When our son said yes the kid replied with a really sarky comment. Then as we walked on I heard a couple of other rather unpleasant comments directed at our son from some of the other kids. These were also greeted with much laughter. I really hope our son never picked up on these. Luckily I think he did miss the meaning.

I realise school is a bear pit some days. But…

I had hoped he was slowly starting to fit in. Maybe I was deluding myself. That thought feels like a dagger to the heart. Yes it could just be just normal playground antics which have been going on for years. I remember as a kid getting the ‘specky four eyes’ comments. Many of the other kids got far worse. But it is a worry. Pointless speaking to school as they say he is fitting in well with a number of friends. The school does seem to count friends as anyone who sits next to our son in a lesson – regardless of whether a teacher has instructed that child to sit next to him or not.

Just going to have to try and make this weekend even more fun for him.