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.

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.

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….

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.

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.

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.

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.

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.

Patience needed

Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.

As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.

That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.

Opinions differ on the future. One of his Paediatricians said

“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”

However one of the best clinician I have come across (unusually a caring expert in autism) argued

He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)

For me this raises 3 fundamental issues

  • What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
  • As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
  • Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.

Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me

Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”

Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.

  • Wow he’s got a funny shirt on

    Dad are you going out in that T-shirt. I wouldn’t be seen in that.

    The look the cow gave me I think indicated a similar interest in my attire. What is so wrong with a bright yellow T-shirt which has a photo of a reasonably well known TV personality on the front.

    Don’t see a problem myself…..

    On the walk we bumped into a family coming the other way. I had a quick chat with them but quickly realised son had pulled his hood over his head and was basically hiding behind a bush. So we headed off promptly. Social interaction just doesn’t come easily for him. Unplanned encounters just freak him out especially if they involve other kids. He hates the thought that people are looking at him. He hates having to make eye contact. He is never sure how close he should stand. He gets anxious when he has to stand still. He is convinced that only a few people get what he’s talking about.

    I could tell this encounter had bothered him. Possibly he was a little embarrassed. He has spoken in the past about being a little ashamed that he could not handle chance meetings more confidently. All you can do is reassure him and tell him to be just himself. Being himself is just perfect. Counselling was having a bit of a positive impact on his confidence but that has dried up now. We work on breathing and anxiety control techniques. Occasionally I try to get him into carefully controlled new situations. The Holy Grail would be a club in one of his interests areas.

    Hopefully one day he will realise that most of us are like this somedays. It’s called being human. But it’s now time to get him smiling.

    “I hadn’t realised my shirt was so embarrassing that you didn’t want to be seen with me. Clearly it’s not a cool look. Good job they didn’t see my Peppa Pig pants”

    Tell me you haven’t.

    I think my smile gave the fib away and he started laughing.

    Do you think they noticed anything unusual about me.

    No too busy thinking what a pillock your Dad looked like. Shall we go home and see if we can find a couple of cider ice lollies.

    I suspect we will be on lockdown at home for a while now. That’s cool. It’s what he probably needs at the moment. And anyway who needs the outside world. We have a trampoline, we have a football goal, we have a DVD player, we have a Peppa Pig DVD (maybe scrap that one), we have jelly and we have our imaginations. What more do we need.