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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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Hadrians Wall

This is the final instalment of our unscripted and unplanned day trip. So far we have ventured to Kielder Forest and Kielder Water. So where next. After a series of left and right turns we are driving along a road when.

Dad stop. That most be Hadrians Wall. Ok it could be a farm wall. But it looks Roman to me.

It was the famous Roman Wall and ten minutes later we were trying to find a parking place at a Roman Fort.

Dad this is really busy. Too busy.

Luckily after buying tickets (while son hid in the car) I was able to find an alternate way onto the site avoiding the crowds. Hopefully the sheep in the neighbouring field didn’t mind us trespassing too much. It would have been such a shame for our son to miss this piece of ancient history.

Housesteads Roman Fort was built around 124AD to help defend Hadrians Wall. The wall was 73 miles long and stretched across Northern England from the Tyne to Solway Firth. It marked the northern boundary of the Roman Empire.

When it was constructed the wall was up to 20ft tall.

Housesteads is the most complete Roman fort in Britain. It stands on a stunning Northumberland escarpment. Can’t think of a more stunning location for a history lesson.

I wonder what the Romans would have made of me. Aspergers wasn’t even a word back then.

Before I could say anything he smiled and said.

Maybe they would have just said he’s on whatever Nero is on.

Back to the Fort tour. Son had obviously banked a considerable amount of information about this Fort from somewhere. No need for a guidebook.

As son was lost in a dream I wandered around the Fort silently with him. Trying to imagine what the site would have been like almost 2000 years ago. Good job the Romans installed steam underfloor heating. Would need it in summer never mind winter. Then another thought. All those years later and we are still trying to build walls. Put up barriers to try and protect our way of life. Have we learned nothing in all those years. Actually our PM is increasingly Nero like. A few other countries have their very own modern day Nero’s.

George RR Martin has revealed that Hadrians Wall provided the inspiration for Game of Thrones. The imagery of the book and it’s Wall are strong and echo that of a Hadrians Wall all those years ago. Romans stood on a huge wall marking the very edge of their civilisation. That view to the unconquerable northern lands must have been truly frightening.

Dad it’s funny when you think about it. The Romans would probably now be standing in the opposite direction, looking South and thinking the same frightening thing. A strange, scary land.

Yes England seems to have gone completely barking mad. Looking into England is a very scary prospect.

And with that we head back home. The road trip has been a great success. Especially as I only thought we would be having a random visit to somewhere local in Yorkshire.

Dad I’ve decided we need to have more road trips to make sure I visit the 12 new places. One needs to be to Scotland. Sorry Dad that might mean we are setting off before we go to bed.

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Kielder Forest

Finally we got a break in the weather. Yes it is feeling very autumnal but it is so much better than the rubbish we have had over the last few weeks. So we seized the opportunity for a trip. Son is trying to visit 12 new places this year. That is such a big commitment for him. Especially as these are completely unplanned and unscripted visits. To avoid undue anxiety or even a meltdown we usually micro manage and completely script every trip.

So we sat in the car at 6.30am with a healthy packup. Crisps, Coke, Cakes, Waffles, Chocolate, Coffee, IronBrew Lollies.

Ok Dad where are we going

Absolutely no idea son. Looking at the road outside our house. Left or Right?

West

Ok clever clogs, left it is then. We did this for 2 hours until we found ourselves North of Newcastle. Beautiful and very remote Northumberland.

Looking at a Road Sign. It’s decision time. Is it Scotland. Is it a bit of Potter at Alnwick Castle or is it Kielder.

The Potter Castle will just be too busy. Scotland needs to be a longer trip. I’ve always fancied a bit of Kielder. Have we got time to do the Forest and the Lake.

We have as long as the Troll doesn’t eat us on the bridge.

An hour later we were walking through Kielder Forest. It is the largest man made woodland in England with 75% of its 250 square miles covered by Forest. It’s a wonderful place. It is definitely Conifer, Spruce and Pine heaven. It’s also one of those places where the car parks are full yet you never see another human. Feels like you have the place to yourself. Which is brilliant for our son.

Son also had time to launch into a tirade at our so called government. He was not happy that they had turned down an application to reintroduce Lynx into this area. Let’s hope the second application is successful. Not had these creatures in the UK for over 1300 years.

The small minded, money driven losers. They sit in their mansions, driving the earth killing sports cars. Behaving like modern day Feudal Lords. I bet if they do reintroduce them they would find a way of hunting them for sport. Well I think we should let the animals hunt Boris and his Sheriffs of Nottingham’s. That would help the planet. Dad last year they told kids to stop protesting and get back to learning. Well why doesn’t the Government get back to running the country.

I would have said the same but with many more bad words included. Good job one of us has good manners.

Going to split this post up into three parts. It’s a proper lads road trip. The second will feature Kielder Water and a bit of aviation. The third part will go very Roman with a bit of Game of Thrones feel.

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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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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.

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The experts

We had an appointment today. Sat in the waiting room with three other families. All three with kids younger than our son. They were happily talking, running around and playing with the provided games. Son sat in the corner basically trying to hide behind a potted plant. This continued up to and during the appointment. Back in the car driving home he was back to smiling and talking about a multitude of subjects.

Since Aspergers became our byword this type of behaviour is common. I remember a Clinical Psychologist saying that it’s likely to be replicated throughout his life. Technically Aspergers is called a life long condition.

Son puts it so much better.

It’s just me. Its who I am.

Yet I had read a blog the other day which basically said Aspergers could be programmed out of people through repetition. It was an illness and as such could be eradicated. The cure…..

One of the subjects we talked about was. How does a Cow see itself. Not as a cow as that is our interpretation. It’s a great question to play with as we will never know the answer. As a result son couldn’t disprove my thesis that a cow sees itself as an actor in a Madagascar movie. Son informed me that about 63% of the worlds cattle population are from India, Brazil and China. He also allowed my random fact that the nosiest cows are from Switzerland – those beautiful cow bells.

Cows have 22000 genes with about 80% of them shared with humans.

I remember reading that cows like to stand either facing towards or away from the magnetic poles.

Apparently in Cow News – a cow walked through a classroom in India today.

Anyway after much deliberation son answered the cow question.

Should really ask a cow about that.

But that’s the secret. Too many humans make lots of assumptions and then answer questions they are not best qualified to answer. So when we talk about Aspergers maybe we should first ask the experts about it. Not the experts but the real EXPERTS. The kids and the adults with Aspergers.

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Lonely

Two days ago it was 34C and cloudless. Today we are back to jumpers, rain and mist. Again the weather matches my mood.

Today I am missing my partner more than usual. Maybe it’s because we are starting to approach the fateful anniversary. Maybe it’s the weather. Maybe it’s 2 hours sleep last night. One thing it is most definitely not to do with is our son. As ever he is the shining light. The only thing that keeps me going.

So as he is watching ScoobyDoo and the Witch’s Ghost my mind is wandering. Not only am I missing her so much there is something else. I am still enjoying parenting today but I’m not enjoying being a single parent today. Does that make sense?

  • Nobody is there to tell you that are doing some parenting thing right or wrong.
  • Nobody is there to give you a hug.
  • Nobody is there to give you that knowing smile.
  • After son goes to bed nobody to snuggle up with to watch a movie.
  • Nobody is there to share a quiet moment with.
  • Nobody is there is ever to make you a cup of coffee.
  • Nobody to cover while you pop out for that bottle of milk or a bag of flour which you have just run out of.
  • Nobody to calm me down when I am about to throttle the hoover as the belt snaps again.
  • No more holding hands.
  • Nobody to share that special moment together when our son does something magical.

Don’t get me wrong parenting is still the most rewarding thing I will ever do. Maybe I need to write a post about the upside. It is the best gig in the world. Just somedays it’s a bit tougher than usual and certainly more lonely than I envisioned all those years ago.