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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.

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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.

Posted on by bereavedandbeingasingleparent · 48 Comments

Kielder Water

The last post left the unscripted day trip deep in Kielder Forest.

Right Dad it’s time to have a closer look at one of Northern Europe’s largest man made Lakes. Rutland is larger but Kielder holds more water. Don’t worry I’m not expecting you to go swimming. The water will be too cold.

That’s a good job as a I can’t swim and I don’t fancy a bout of frostbite. I later checked those facts. Apparently Kielder holds 44 billion gallons of water. That’s an awful lot of trips to the toilet. It tends to be full at all times. It has a number of natural springs feeding it plus let’s not forget the weather.

With the autumnal like wind whipping across the lake and the breaking waves – it did feel like a seaside walk.

I’m guessing it is just under York Minster deep. That’s about 235ft. I’m going to say about 70 metres as Boris Johnson will hate that. He hates everything from Europe or that is what he wants people to think. Some people will fall for that.

Ok can’t miss a bit of of annoying our Buffoon of a Leader – so Kielder holds 200 billion litres.

Wouldn’t it be great if Kielder had its very own Loch Ness Monster. Ok it’s a manmade lake built in 1982. But the monster could have migrated here. What do you think Dad.

How about a Megalodon.

No legs or wings so it’s not migrating in a hurry. I’m seeing either a Spinosaurus or a very large otter.

Unfortunately I didn’t have the opportunity to explore the monster otter concept as suddenly a large military plane swept low over us and across the lake. My ancient mobile didn’t do it justice.

Dad what time is it. Have we got time for one more place. We are on a roll now.

It’s 3pm let’s see what we can find. So back at the car. Is it Left or Right.

East.

Final part of the road trip takes us back in time.

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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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Coordination

Beauty in the sky masked evil intentions. Twenty seconds later a successful bombing run covered my car bonnet. Not so beautiful. The one hand giveth; the other hand taketh away.

Basically I have knackered my body up. Medical advice was to rest the right side for a couple of months. No running. If you play football in the garden – don’t use your right foot to kick. That’s a bit of a problem. During my sporting career the left leg has been a bit of a spectator. It is used for standing on and just getting in the way. Nothing else. So since a toddler I have been completely right footed.

So this garden football season was approached with trepidation. The first attempts confirmed the fears. Absolutely useless. Even the frequent cow audience clearly most unimpressed with my attempted kicks.

But a couple of months later and….

With one hand giveth.

The left leg is like a magicians wand. Better than the right foot ever was. Complete ball control, pinpoint passes, power, curling shots into the top corner of our small net. It just shows that with practice what you can achieve.

But with the other hand taketh.

Now the right side is a little less painful I’ve started using it again and just maybe I could be a natural two footed footballer. Guess what. The right foot is now completely useless. Can’t use it. All my hard work has basically switched me from being completely right footed to completely left footed.

Maybe my brain can only cope with one usable leg.

Son struggles to tie shoe laces. He also can’t use a knife and fork at the same time. He just can’t coordinate two limbs simultaneously. It’s a bit like riding a bike. Son can peddle but not at the same time as steering or braking. If he turns a corner he can’t peddle. He did manage to learn to swim but it doesn’t come naturally. It’s either using his legs or using his arms – not both at the same time.

He has been diagnosed with Dyspraxia which often goes hand in hand with Autism. The bottom line is coordination does not come naturally. We have been doing some exercises to work on this. Jumping on a trampoline and catching at the same time has been our single most fun exercise. We have seen some improvements for example he has developed good catching skills. But things like shoe laces are probably going to be life long issues. We realise this. The main reason we do coordination exercises is to help with his Dyslexia, other improvements are bonuses.

Maybe you just have to accept and work with how your body is setup uniquely for you. Make the best of it. We all can’t be brilliantly coordinated like birds. To fly, aim and poo at the same time. That’s beyond me.

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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.