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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.

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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.

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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.

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The phone

A couple of miles from our village a large TV event has been taking place. Something like 20000 people have been attending. But we haven’t seen a soul. The dog walk felt like we had the land to ourselves. Isolation.

This summer is probably going to be my most isolated ever (so far). Outside our gang I would be amazed if I have spoken more than 30 words to the outside world. Probably had more conversations with the plants (weeds) in our garden. It really is starting to show. Even something as simple as buying a couple of entry tickets leaves me a gibbering wreck.

Not had a single conversation with anyone in the village in months, Suspect the village are celebrating that. Even the postman has gone into stealth mode. Absolutely no sign of the neighbours.

A few years back I remember a clinician telling us that we should probably get used to the idea of becoming isolated. Get used to your own company. She had seen a lot of parents in our position get cut off from friends and the outside world. That seemed fine as I had my soul partner with me. Didn’t realise how applicable own company would become.

This afternoon I checked if our phone was still working. It’s not rung once during the entire school holidays. In fact my mobile has only had two brief work calls. As the months go on my isolation from the world gathers pace. I’m not sure if that scares me or delights me. It’s got to the stage that I’m not sure if anyone would notice if I replaced the phone with a large bust of Boris Johnson. Probably not.

I would hope that the Boris bust would become a favourite cock a leg spot for the dog. Suppose I would need to move it outside. Wonder if Boris would tell the migrating birds to bugger off back to their own country. Sorry should really give Boris his full name

Alexander Boris de Pfeffel Johnson.

Ironically Boris wasn’t born in this country. Given his position on immigration maybe he should send himself back to America. Anyway I bet his phone rings more times than mine. A man who currently wants the UK to be isolated Internationally probably doesn’t understand what isolation really means.

Maybe I should offer my services. I could be the Governments expert on isolation. I did think about being the Government expert on talking gibberish but they have already got that position well and truly covered.

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Brief

For just a few minutes the clouds parted and summer made a brief appearance. Back to rain now. It was nice while it lasted.

I woke up this morning and like most mornings – half asleep. Few minutes later I’m peddling away on the exercise bike. Starting to feel more awake now. 28kph – come on lazy pants bit quicker.

Dad your squeaking.

And with that his bedroom door shuts. (Most unusual) I most be squeaky. So my morning mini Tour De France is interrupted. Why is it that when you need something from the toolbox it somehow develops cloaking technology. The oil was in the box. Search abandoned and cooking oil is smeared over the noisy bike. I wonder if this is common practice in professional cycling circles.

So we start the cycling again.

Dad can you hear the strange noises outside.

The resulting investigation seems to indicate the side gate banging in the wind. Quickly fixed with a brick. It’s tough for our son. So easily unsettled.

Can you move the bike into my room.

Tell you what why don’t you bring your blanket and try to sleep on the sofa next to the bike. The dog will happily join you. Few minutes later he is settled in with his four legged hot water bottle. So I try to start cycling again.

For a few brief moments I get into the zone. Good speed. Then the mind starts to wander. The biggest problem with indoor cycling. It was an August Sunday three years ago at about this time when the phone rang. It was the Doctor saying sorry but the last treatment option had failed and it was now time to move partner into end of life care. Shiver down the spine. Feel completely sick. Tears starting. Then anger. Why. Tell me why.

Anger fuelled peddling. Speed is now becoming breakneck.

Dad your squeaking again.

And with that it’s time to get off the bike. Squeaking wins the day. Come on son let’s have an unhealthy breakfast.

Can I have waffles.

You can have anything you want son. So like the sunshine. Today’s exercise was brief and my healthy eating regime is broken. Too brief to make a difference.

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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….

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Castle Time

Why is it that when you take the car in to a garage the words you never never hear are

Don’t Worry it’s nothing

It’s a cheap fix

It’s sorted and there is no charge

So today the car misbehaved. Took it into the garage and within minutes was told it needs a new ……. and it’s going to cost £XXX

One of the benefits of a spectacularly unreliable and expensive to maintain car is that they seem to have allocated it its own dedicated service team. We can look at it straight away. It will be ready in a couple of hours.

So we had a couple of hours to pass and luckily we were in walking distance of a castle. A fine ruin of a castle.

Pickering Castle was originally built around 1070. It is reasonably well preserved as it missed out on the carnage which was the War of the Roses and the English Civil War. I hoped that this unplanned visit would count against our sons target of 12 new places to visit. Sadly he pointed out the exact date and time of his school visit here 4 years ago.

I always think castles look better in black and white. Brings out their hidden Hammer Horror character.

It was a fun couple of hours as son explained in great detail the history of the castle. It’s linkages to wider English History and the various different structural improvements which have occurred over the years. I added important stuff like cool places for ghosts to hide.

Unfortunately the hours flew by and all too soon it was time to return to the garage. Luckily they still take cheques. That buys a couple of days to keep the bank manager happy. Son helpfully pointed out that a few hundred years ago I could just have raised taxes to pay for it – probably a Poll Tax. That assumes my role would have been Lord and not Peasant. In my all to likely Peasant role I had better start shovelling that muck quicker.

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Alviiiiiin!

I wonder if the cow is even aware of that strange thing in the sky. Should I warn the cow. Probably not – would just think I’m full of hot air.

I think saying stupid or silly things is a release for me. It’s a way of relieving pressure. Diffusing the dark thoughts that can crowd my mind. However that Monty Python in me is often misinterpreted.

He’s a happy soul.

Not a care in the world.

OR

He’s got over things now.

He’s moved on.

That is so far from the truth. Everyday is a struggle. You just have to learn to coexist with Depression and Grief.

I would love to release my inner demons through beautiful paintings or dark soulful poetry. Unfortunately that’s just not me. It doesn’t work for me and the end result is a pile of pants. All it does is bring out my inner Alvin and The Chipmunks. Not sure that would be a box office winner – Alvin and The Grief Trip.

Sorry there I go again.

The point I’m trying to make if Alvin would just let me is that how you appear on the surface is often very different to how you actually feel inside. It doesn’t help that often people don’t want to hear how you really are feeling. They will ask – how are you? They desperately want you to say – fine. And guess what – when you get asked that question your almost preprogrammed to say – I’m ok.

Maybe we should have a deal. From now on let’s all REALLY ask how someone is. When they say fine or ok how about we follow up with – are you really sure. Or I’m here for you I know how tough it can be.

The other part of the deal is when someone takes the time to really ask how you are then be honest. Instead of saying just dandy it is ok to say like shit or not good or I’m struggling. Or if your feeling really brave just say I could really do with a hug.

We all struggle sometimes. Wouldn’t it be a better world if we could all just be a bit more open about that. What do you say Alvin.

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That’s how it is

Just seems such a waste. Such a beautiful flower and yet it’s in our garden so it only has an audience of two. But that’s how it is.

He is so caring. When his class had the last day in the old school one of the girls cried her eyes out. The only one to go across to her and ask if she was alright was our son. Yet because he is on the spectrum he must be unfeeling and cold…..

He brain is far more powerful than his Old Pops yet somehow I went university and he is seen as being low attainment.

He has a love for scientific enquiry yet that counts for nothing as he can’t accurately hand draw a plant cell structure or spell correctly common science words.

He can create awesome self contained worlds with detailed mythologies, politics and cultures. Yet because he can’t construct a grammatically correct postcard he is written off.

He can forensically debate historical details yet because people assume that he will never read a textbook he is not encouraged to foster that subject love.

The education system has written off his reading as something which won’t develop yet he can read and send texts without help. He is told to just get used to using a reading pen yet today while watching the Justice League he read the sub titles almost perfectly.

He is not part of the in-group of kids who live and breathe football. Yet he can talk for hours about football stats. Relive the sports greatest moments. Can talk for hours about the minutiae of Team setups and tactics.

He can be so relaxed, so astute and so naturally funny. Yet only I see this. It does seem such a waste. But that’s how it is.

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Hill

I don’t know what it is but I love looking at this one field. It just works for me. It also puzzles me – what is on the other side. I have no idea. One day I will check. Is that the best approach?

During the process of getting a diagnosis for our son he had to undertake a number of tests. He would only do them if I did them as well. So by de facto I was assessed as well.

Dad you do know Aspergers can run in the family. Mum’s side probably has. Your side is not so clear except for one person. You.

When I look back at my childhood I was more relaxed when I was on my own. I would often be found apart from the others in my class. I struggled to get my head round bondage language and emotions. Hated physical contact, hated being crammed so close to others. I made friends as I was good at hiding my anxieties. But I never could quite see the world like my friends did. Often seen as the odd but funny one. I was often quiet. I tried to hide a bad stammer which appeared when I felt uncomfortable. My school reports said ‘very shy’ – no I didn’t want people to hear my faulty speech. Initially slow at reading and with appalling spelling. Accident prone and uncoordinated – yet found ways to be good at sport.

All those probably still apply today. Apart from the physical contact phobia – do love a good hug.

So the tests what did they reveal. I remember a therapist telling me

It’s wonderful how you have failed some tests to reassure your son…

Don’t want to disappoint you but I didn’t have to try to fail the tests. It came all too easily for me. Not all the tests but many I did struggle with. I mentioned this to our son’s Clinician. When I told her which tests and how I struggled her take was that it would probably have been enough to trigger a diagnosis. She asked if I wanted to go onto the waiting list for Aspergers Assessment.

But that’s as far as it went. No interest in finding out one way or the other. Waste of valuable NHS resources. Not going to he,p me now. As son would say it’s just who I am. But maybe this is the reason that I have been able to get my head round Aspergers. Partner spotted the Aspergers with our son first but admitted I got my head round it instantly. She struggled. If it allows me to better understand the issues our son faces. That’s good enough for me.

We’ve talked about what’s over the hill. Son think it’s a panoramic view of the Vale. I thinks it the Yorkshire Area 31. A place housing our alien rhubarb technology.