We had set our hearts on a trip out. Son wanted to go for a walk round a quiet lake. I wanted sea air to cleanse my soul. I was born near the sea and it has great healing properties. But the weather was grim. Too grim. So a change of plan.
Plan B. We needed a few smiles this morning so off we set to the cinema to see the new Horrible Histories movie. Maybe not quite as funny as Bill but it was a really good film. Yes it brought many smiles.
As the rain lashed down on the drive back home it was decided to just have an afternoon of movie watching.
Dad let’s watch Bill when we get home.
So it was a TV lunch. Jacket Potatoes and a super funny take on Shakespeare. It’s amazing how a couple of funny films can lift the spirits. Makes you forget your own reality. It’s a most odd feeling these days. That feeling of laughing. So as Bill finished I wondered what comedy classic our son would pick next. Monty Python? Paddington? Ice Age? Spongebob?
I’ve decided Dad. Can you check if you can find XXXXXXXX for free. Always fancied watching it.
So 20 minutes later we are watching another movie. MacBeth staring Michael Fassbender. Yes not the happiest movie. A bit short on laughs. One of those films which is just so bleak that it forces you to put on the thickest jumper you can find. Even the steaming hot coffees fail to warm my bones. It’s gory, it’s dark, the music is brooding, the imagery is stunning. Not quite the family movie I had set my heart on but I suspect William Shakespeare would have loved what his words had become.
It’s strange how something so bleak can help you forget your reality as well. My mum would always say she would play sad songs to cheer herself up. I understand that now.
There is a scene at the end of the third Hobbit movie where Tauriel pleads after the death of her love
Why does it hurt so much?
With the telling response from Thranduil
Because it was real.
This is a bit of movie padding as it’s not from the book. Tauriel is not even in the book. So it’s not canon. But frankly I don’t care. It’s a rather fine movie and the sentiment can’t be faulted. It is hauntingly true.
Before 2016 I never noticed this movie exchange. Now it never fails to get to me. How often do you experience real love and yet it passes you by. You seem to miss living in the moment. Take things for granted. Assume you have time. Plenty of time to get round to the important stuff after you have ticked off the mundane tasks. The tasks expected of you. In reality you may have little time. Putting love off proves to be little more than a foolish role of the dice. A gamble where the debt can never be paid off. Suddenly when it’s ripped away from your grasp love becomes so vivid, so obvious ,so painful. Yes it’s real but now it’s not just a memory. Your moment has gone.
It’s a stabbing pain. A pain etched in memories. I have a few particular memories which are like the most vivid photographs ever. All real and all so painful. Yes painful but they are about love. Real love. One is from a Swiss trip before our son was born. We were on a boat on Lake Thun. I had gone outside to take a photo. The image is me looking through the window and seeing my partner smiling back at me. Every time I see that memory a bit more of my soul dies.
Why does it hurt so much.
Because it was real.
Zero sleep last night. Not even looking at old photos from a trip to the Peak District helped at 5am. And as all you biologists will know – zero sleep equates to zombieism. So I’ve been a full on zombie today. All zombies need a cool name, just ask Rob Zombie or Shaun of the Dead. A particularly awesome zombie was Skipper in a brilliant episode of The Penguins of Madagascar. If you want a laugh look up that one.
My first name might be fine in front of a famous Western Actors surname or in front of a great English Strikers surname or as the name of a pet in a certain underwater burger eating cartoon. But as a Zombie it is pretty lame. So we need a rebranding. Hopefully for just one day only I am Zord. Yes I watched PowerRangers.
Unfortunately Zord is a bit cranky. Zord has decided he doesn’t like August. Too many memories. Bad memories. Sad memories. The slightest thing can bring a tear. Yes zombies have an emotional dimension to them. Yet again movies like World War Z are so quick to stereotype.
Zord is a bit accident prone. Smashed a cup and broken the scissors. He’s burnt toast, crumpets and baked beans today. He even managed to set fire to a dish cloth. Zombies clearly don’t get to use an oven much. Must admit the microwave is beyond Zord as well. He initially just took the lid of the tin of beans then put the tin straight into the microwave. I think Zord fancied being the Lord of Lightening just once.
Zord has a tendency to fall asleep. That sleep where the eyes shut, the head then falls backwards and you are immediately woken by that awful head snapping sensation. So far Zord has tried that while watching TV, while trying to type up a report, while trying to sign a cheque and while on the toilet. Silly Zord.
Zord can also be a bit snappy. Unforgivably Zord has snapped a couple of times at our son. Bad Zord. But he does realise that being snappy is not a good trait so he is trying to control the snappiness. Zord finds coffee and chocolate helps. I’ve not had the heart to tell Zord that he is one of the few vegan zombies.
Let’s see what lasts longer with Zord – zombieism or veganism. Trying to be a vegan is bloody expensive. Sorry bloody and vegan shouldn’t be in the same sentence. Forgive me I am a tired parent zombie.
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.
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….
It was a bit wet in Yorkshire last night. Landslides, floods, bridges swept away. That’s more like proper summer weather. So this photo was taken a few days ago – now the path down to here is flooded.
The local stately home has a Classical Proms on this weekend. Given the amount of rain coming down at present I suspect they could dispense with the services of the Orchestra – unless they can play underwater. A more appropriate option would be Spongebob and Patrick.
It’s strange how the mention of the Proms brings back memories.
- Sat at that venue watching a summer concert featuring Tom Jones. It was cold, it was wet it was grim. My partner had 3 jumpers on. Scarily I knew every single song Tom sung. The couple behind us where a bit disappointed as they thought they had bought tickets for Tom Waits
When we first moved here we decided to have a Proms party. Sit in our garden with wine and listen to the music. This being Yorkshire the summer Prom featured a gale force wind. We couldn’t hear a damm thing.
The year after we tried again but still couldn’t hear a thing. So I stayed sober and we sneaked into the car park and listened from their.
The year after that we actually bought tickets but completely forgot. We didn’t realise until we heard the fireworks going off.
So this weekend I will go outside with a cup of coffee and see if I can hear the music. If I can then I will sit next to my Partners Yorkshire Rose and reflect on life. Maybe I will just go outside and play some Elgar and Samuel Barber on the iPad. Reflecting while holding a brolly.
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.
Absolutely shattered. Tank empty, operating on fumes. Sleep walking. Zonked out. Giving Zombies a bad name. Too tired to sleep. Insomnia. Whatever you call it, it’s not a good place to be. Too many of us suffer from this. So much for progress.
Last night was a decent one really in the scheme of things. Three hours sleep. But just not enough. You know it’s going to be a long day when you go to make a wake me up coffee only to find when you sit down that you had already made one only a couple minutes ago. At least back to back coffees was a nice indulgence.
Thankfully I was alone at work. Not sure I could have managed conversation and spreadsheets. Today the spreadsheets got the best of me anyway. Nothing like looking at row after row of numbers to help wake you up – NOT.
One thing is clear – my tiredness makes me a sitting duck to stupidity. Driving back from work today I picked up our son from school. Soon the tiredness really started to catch up with me. While driving I fumbled around next to me for anything sweet and sugary. Unfortunately I completely forgot that I had not yet disposed of my son’s ear plugs from Kiss. Repeating the disaster from last year I again sampled the taste delights of used earplugs.
I was that tired I didn’t initially realise the humiliation. Just chomping away, just marvellous. The first indication was the hysterical laughter coming from next to me.
I secretly hoped you would do that again. You are often so predictable. So predictable I actually cleaned them first. See I’m nice that way.
Very kind of him.
Later I took the dog for a walk. No that’s wrong. This evening the dog took me for a walk. I was definitely in autopilot mode. We ended up in a random, new field. At least it was beautiful. I could happily have crashed here for the night. Not sure the farmer would have been that impressed with the sleeping trespasser. It took me a while to figure out how to get back home.
Anyway I’m back now. Hoping for maybe 4 hours tonight. That would be nice but I’m not holding my breathe. I will take any sleep, any at all.
Kissing is something which died when the world changed. Well anyway for me. But Sunday Night Kissing is still just about possible.
Last night we went to see Kiss perform their last ever English concert.
It was loud. It was cartoon like. It was larger than life. It was ridiculously full of explosions. It was Rock and Entertainment at its best.
Unbelievably I noticed a young chap stand up without prompting, start dancing, shouting, singing and clapping. That’s a first. Thankfully he has more rhythm than his Dad.
I have to say music has been a lifesaver. It’s always been the one constant. It wasn’t embarrassed when I struggled with depression. It didn’t turn its back on me when death came calling in 2016. And it didn’t batter an eyelid when Autism came a calling.
Yes Kissing is a memory. No more Kiss concerts for us. But we have precious memories.
Music is an unwavering friend who has embraced our son. Thank you Kiss. Thank you Rock. Thank you Music.
All the days I have walked the same path. Seen the same views in differing weather conditions. Yet I’ve been blinkered. Walking through a small wood and always looking straight ahead at the path leading out of the trees. If I only had stopped looked right and peered through the trees I would have seen this small pond. Yesterday I did that. Then throwing caution to the wind I looked left. Another pond.
Yesterday was a day of revelations. I was sat in the living room pondering life and death when I suddenly noticed something that I had completely missed. Before the world change we were like most couples. All of our possessions just merged together. Her 80s dance CDs would be intermixed with my Heavy Metal discs. Her historical drama DVDs would be randomly mixed up with my Sci Fi ones. Apart from clothes our stuff just randomly lived together.
Now she is gone and yesterday I realised the order of things has changed. Now we have separate piles. Her CDs in one near pile, mine in another. Her books in one book case, mine in a separate one. When I’ve used her stuff I have filed it neatly back with her pile. A repeated pattern. Her stuff, then the stuff we bought together then my stuff. Perfectly split.
Bizarre. Why? This is purely down to me yet it’s completely out of character. The most disorganised and random person going. Probably more than ever and yet suddenly items are being put in order. I hadn’t even realised I was doing it. Blinkered again.