Demon Hummus

Dad what on Earth is that.

I’m trying to make home made Hummus.

Are you sure it should be that colour.

No that was not what I was expecting.

Dad it looks like something from the X-Files.

I’d moved from trying it with some carrots to which bin it should go in. It might even need a Priest and an Exorcism before it’s safe to do that. Wonderful. Yet another culinary masterpiece.

Dad let’s take the pup to the woods. If we go now should have the place to ourselves.

So leaving the alien hummus to mutate into something with teeth we set off. The signs of autumn are now all around us. Less than 900 miles away the first winter snow has come to Italy. So that’s another summer ticked off. It also means the 30 year old boiler is being fired up for the first time in months. That process is always done on a wing and a prayer. Apparently when it goes to boiler heaven it’s going to cost a fortune. Not just the boiler but the pipes, a good part of the central heating and the oil tank will need to be changed. We couldn’t afford that when we had two incomes never mind when it’s become one (on less hours and at a much lower pay rate). I remember being told by one mum that I should just hire childcare or put son in a club so I could work full time again. Not the first idea about single parenting and Autism but to be fair her hummus will be considerably better than mine.

This might have been a good place to go on about some of the practicalities of when you go from two to one parents but not when it is so close to THE ANNIVERSARY. Anyway the old boiler has fired up. Which is a bonus. THEN….

Dad did I tell you school has changed the PE Polo Shirt from white to black. You can use the old ones for a couple of weeks then if you don’t have the new colour you will get negatives.

With the great news of yet another visit to the school uniform shop still fresh I decided to try the demon hummus. The taste sensation was somewhere between wallpaper paste and a skunks bottom. But on the bright side I might have found a home made recipe for wood putty. That might come in useful this winter.

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.

Feel it

Autumn is coming I can feel it.

That anniversary is coming I can feel it.

Coming up to three years on the grief train.

The world flies past the window with no slowing down.

Unclear where I am heading or the purpose of the journey .

Captive Passenger on this locomotive with absolutely no sign of a conductor.

Who would have thought that after 3 years I would still feel so completely confused . Don’t get me wrong I am so lucky. I have a purpose to focus on. Give son the best childhood he can possibly have under the circumstances. Be there for him when he needs me for as long as that may be. My life is completely focused on our son.

And yet.

I realise that as son becomes increasingly independent (that has to be the goal) then I will need to start finding my own life again. My own self purpose. Will need the pesky grief train to stop at a new destination. But here is the conundrum. I’m driving the train, I’m the passenger, I’m the conductor. It’s down to me. I have to want that new destination to arrive and then I need to open the train door – and then decide to leave the train.

I’m using up valuable air. I owe it to the world to start living again. Eventually.

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.

Distraction

As a kid I’m sure I thought the phrase was

Red sky at night fisherman loves angel delight.

Red sky in the morning the angel delight has gone.

I’ve not had Angel Delight since a time when my parents thought it was cool to dress up the youngest child in a brown cardigan and Joe 90 glasses. Joe 90 is really showing my age. Just in case your not 945 years old:

Angel Delight is a powdered dessert which depending on the stirring technique either had the texture of liquid silk or cheap lumpy wallpaper paste.

Joe 90 was a ten year old super brain of a kid – a Gerry Anderson creation

I thought it would a good idea to let son try a bit of Angel Delight

What on earth is this

Strawberry Angel Delight

Is it supposed to be lumpy

Not really. But you don’t have to eat the lumpy bits.

No Dad, just No.

So yet another parenting disaster. Even the dog showed no interest in the potential for leftovers. I suppose the aim was never to get son hooked on all those E numbers. It was more distraction. Distraction from the previous days meltdown and from the upcoming anniversaries. His grannies leaving us anniversary is in a couple of days closely followed by his mums anniversary. Sandwiched between the two is a return to school. Yikes.

I am reminded of Angel Delight by a recurring memory of my partner making herself a milky rice pudding most nights. It’s often the little things which produce the most vivid memories. The glass bowl she made the puddings in has remained unused since she left us. It’s kept in exactly the same place on the worktop – it is occasionally dusted down. I could probably do with a good dusting down these days.

This afternoon we are taking the distractions to a whole new level. The biggest bottle of sugary coke and a bag of mentos. Wish us luck as we try to split the atom…..

A brief moment in time

Off to see the birds. We set off for the RSPB reserve at 8am in glorious weather. Son was in great spirits happily firing facts in my general direction. I certainly upped my Puffin knowledge which sadly is not difficult.

Unbelievably I found Bempton Cliffs first time. Everything is going to plan. Even remembered not one but two pairs of binoculars. One pair being so old it predates the discovery of glass.

Son had drawn up a detailed itinerary which included a picnic. I wasn’t particularly hopeful on the picnic front. The chef conjured that up at 3am in a state of some disrepair. Not so much Gordon Ramsey more Gordon The Big Tank Engine.

As per the itinerary we visited the first viewing location. Absolutely stunning. Son spotting many different types with the newer binoculars. The view was not so clear with my prehistoric viewing aids. The combination of lens scratches, permanent fogging and the inability to focus took me back to my University Drinking Days – and that was just my knackered old eyes. As for the ancient binoculars – might as well have been trying to look through two Yorkshire Puddings.

Unfortunately at the second viewing point the plan went to pot. Before I could react the really helpful (and clearly very nice) bird expert suddenly approached son and asked him if he wanted to see a juvenile Gannet taking its first sea swim. The sudden and unplanned social interaction completely spooked our son. I could see the terror in his eyes. Bravely he took a very quick look through the bird experts spotting scope to see the swimming bird. A minute later we were quickly exiting the reserve – meltdown in progress. An hour later we arrived back home.

That’s just part of our Aspergers world. You can plan all you like. Risk assess to the finest detail but you can’t plan for everything. It’s nobody’s fault. Not the bird experts, not the parent, certainly not our son’s. These things just happen. All you can do is get back to the safety of the home, pull up the drawbridge and settle in. Try to come up with as many distractions as possible. Red Dwarf and Marvel are great. Football outside is a winner. Important point to Dad – we have a small garden so don’t try to hammer the ball with a bit of bend in to the top corner of our small goal – son will wet himself as I launch the ball into orbit – somehow it landed in the garden TWO houses away.

Three big pluses from the day:

  • RSBP Bempton is absolutely stunning so well worth a visit.
  • The Gordon the Tank Engine made picnic was not to shoddy at all.
  • If you have your picnic on the trampoline with the safety net closed it keeps the bugs off the food.

And above all at the end of the day son is smiling and that is all that matters. It doesn’t matter how you get there – just end up smiling.

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.

Hot

It’s hot. Yes I’ve said it now. Yes Yorkshire is hot. When I say hot I mean hot for Yorkshire which probably means it’s probably two jumper weather in Arizona.

A grand day for a trip to the zoo.

Clearly the zoo animals had the right idea. Stay in the shade and watch the silly humans walk round in the blazing sun.

Dad can I have a slush.

What a grand idea. Unfortunately the kiosk informed us that they had just switched the slush machine on and if we came back in a couple of hours they should be available. It was a similar story with the ice cream machine. So we purchased from the limited available snack range. Sat in the hot sun with two cider lollies and a bag of just fried hot donuts.

Dad it’s a good job your a professional athlete or you would be getting a Dads Belly.

Clearly a kid with Aspergers don’t have a sense of humour. Come on Hollywood get your facts right.

Dad it’s getting too busy.

And with that we left. But the zoo gave us one last memory. As we were walking out of the main door a delivery driver had arrived and asked a parking supervisor where he was supposed to drop off. He was told “Through those gates. Just unbolt the lock and drive into the compound. Just make sure you lock the gate immediately”. The delivery driver in a slightly alarmed voice asked “Are you sure”.

Visions of Jurassic Park and a driver about to come face to face with a suitably pissed off carnivore came to mind. Clearly the driver had similar thoughts as he made sure he round his van window up before he ventured any further.

Spectrum

Sometimes it’s tough watching TV and Film with its frequent ill informed stereotyping. It’s not often you see Autism depicted as routine ‘normal’ life. It’s the full on Rainman, the brilliant genius or ….

Dad how many people will think I’m a Psychopath or Sociopath when they find out I have Aspergers.

That’s another question I can’t remember seeing in the really helpful ‘A to Z of Parenting Books’.

Those very assumptions have appeared in a few movies and shows we have watched recently. Some quite indirect references and some completely full on. We love Sherlock. In the series it’s made quite clear that Holmes has Aspergers. Further Holmes frequently says ‘I’m not a psychopath I am a highly functioning sociopath”. In another movie the person with Aspergers is a loner, has no empathy and shows no remorse for his actions. Here Aspergers means you are a Psychopath.

The two are not the same.

Our son has developed a good understanding of the important differences between the two diagnoses. He is also aware that unfortunately not everyone understands this equally as well. That’s where inappropriate stereotypes in TV and film can have such a negative impact. Whatever the reason for this. Laziness, widespread misconceptions, Creative Blindspots, or a deliberate attempt to avoid reality. Autism is such a broad spectrum its time this was reflected more accurately in mainstream culture. Yes it could be the brilliant detective, but equally it could be the loving person next door, or someone who is socially awkward, or the loner, or the comic, or the gentle animal lover, or the person who is physically challenging, or the person who focuses on one topic, or the person who has intellectual disabilities or the average person who just blends in.

Just as damaging as the inappropriate stereotyping is the air brushing of reality. Autism is relatively widespread. Yet often it is invisible in modern culture. It’s as if it doesn’t happen. Depending on the research the instance of autistic diagnosis is approximately 1 in every 50 or 60 child. That doesn’t include the majority who go undiagnosed. Yet autism is grossly unrepresented in TV and Movies.

Let’s start properly promoting awareness. Let’s start to be open about it. Let’s start to see it done right more times in TV and Film. That would make such a big impact for so many of us.

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.