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.
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….
Ok is just one of those words. As a kid our headteacher would give you an automatic detention for saying it. It was a banned word along with Punk, Booze, Ciggy, Damm, T**t, F*** ………. I think it was not seen as proper English. Strange as it was a school in Yorkshire and we could say words like Wazak, Jiggered and Chuffin Heck.
Now I have a problem with ok. It’s a twofold issue
- It’s too easy when someone asks how you are to just say “OK”. It almost becomes automatic. What does it mean really.
- When I ask after somebody’s wellbeing I often say “Are you Ok” or “Hope your Ok”.
Hope your ok…..
The more I think about it the worse that sounds. First of all are you ok. It sounds like I’m hoping someone is basically average, somewhere between wonderful and sh**e. It’s hardly the same as saying are you great, spectacular or wonderful. Basically setting a pretty low expectations bar. Don’t get me wrong we all feel just average somedays. It’s not as good as being happy but way better than being like sh*t. It would be nice if we were all happy some of the time.
Are you ok…..
You are often talking with people who have suffered or are suffering so much pain. Depression, Grief, Loneliness, Despair, Hardship, Physical Pain. Are you ok sounds such a trite way of asking after someone’s wellbeing. Well of course they are not OK.
It’s just a personal thing but I am going to try and find more suitable alternatives to Ok. Maybe they don’t always exist but it’s worth a try. Recently when people have asked how I am I’ve started trying to say Distinctly Average rather than ok. It’s actually feels like a good summary of my usual mood. It certainly feels a more meaningful response than OK. But I will definitely promise that when someone does take the time to ask how I feel I will be honest. Hopefully no more bland OKs.
Asking after someone’s wellbeing is proving more difficult. It’s definitely still a work in progress. Maybe How are you doing is the way to go. What about How are you feeling. Actually it’s probably the follow up question which is the key. We shall see. I’m going to have a good ponder about this. I hope that’s ok with you.
Meet Ricky the newest member of the gang. He’s made an appearance before when he started burying his nuts in the lawn over winter. But now he has started coming for his lunch. Happily feasting next to the birds. He (or she) will be a welcome friendly face going forward.
We are just over a week from the start of the summer holidays. Six weeks of immersing myself in our son’s world. It truly is a privilege. A wonderful mind trip. Happy parent.
I bumped into a parent from his current school. They have the holiday mapped out. Immediately they break up they are going to a music festival for the first weekend. Then the kid is going on a football course for the first week. Then they fly out for a two week beach holiday in a popular Spanish resort. They come back and then the kid is off camping with the scouts. A couple of trips to fun parks and family barbecues are then followed by a family week in Paris Disney.
Asperger/Autism summer holidays can be very different to this. Ours is. For a start we are limited by finances. Our summer holidays are long periods of house lockdowns briefly punctuated with carefully selected trips to places without crowds. This means early day trips to places like Zoos – trying to cram as much in as soon the venue opens and leaving as soon as the crowds start to build. For his favourite zoo that means arriving at 9am and probably leaving around 10.30am. Trips to the cinema will be to the 8.30am screenings. Locations will be carefully planned so that he feels comfortable there. Walks will be in very remote and largely unvisited areas.
A trip to Switzerland would have been an option (he is comfortable there and the journey is familiar having done it a few times) but we just can’t afford it. Plus he is more comfortable going during quieter periods – April/October. And we haven’t tried it since his mum left us – will it ever feel the same.
So our summer holidays will be quiet and largely cut off from the outside world. That would worry me in the past. The real danger of becoming increasingly introverted over those weeks and losing any social confidence which I had struggled to build up. This year it doesn’t really bother me. Yes I might become more introverted but its not as if I have a full social diary. Introversion and isolation is the new me. I can focus on our son and see what adventures we can weave – I’m sure Ricky will play some part as well.
“Dad just seen on YouTube that when we see Kiss the support act is a Professional Performance Painter. Bet you haven’t seen many of those.”
No not something Yorkshire is really blessed with.
“I bet he will paint the band. Bit of a missed opportunity really. In 45 minutes he could finish off my bedroom.”
Ok it potentially wasn’t the greatest painting job ever. Yes a little rough round the edges and the wrong colour. But apart from that it was alright. As my Dad would say – a man on a galloping horse couldn’t tell it was a bad job.
“If the Performance Painter can’t do the show maybe you could step in. You could become a Professional Performance Baker. I use the Professional name very loosely. They would need a team of firefighters on stage just in case.”
Maybe I could be a Professional Performance Hairdresser and I could get stuck into your hair. Today it resembles a hay bale.
I walk by that hail bale in the photograph virtually every day. One side of the path has two lines of bales neatly lined up. On the other side of the path just this one rather lonely bale. I would like to know its story – why is it apart from the others. Maybe one day I will bump into the farmer. Anyway it’s a fine bale and I give it a friendly pat on every pass.
A few yards further along the path I bumped into a woman coming the other way. Apart from my son it was the first friendly face to face conversation I have had in a long while. Unusually I wasn’t lost for words or tongue tied. It was nice to chat and have a smile. It’s been a long time. Just like the bale. Been isolated for months. Bit frayed round the edges. Soggy in the middle.
Maybe that’s it. I could become a Professional Performance Hay Bale. Certainly a niche.
Apparently native to Yorkshire… wonder if they fancy a chat. If they don’t then I won’t get the hump.
I have never been someone completely at ease with people. Once I get to know a group then I can come out of my shell. Occasionally a bit too out of my shell. But often I was the person talking to the plant in the corner at parties. As the years went on I found that I could find a reasonable way of communicating with people. It was hard work but it sorta worked.
These days I have no practice. I have become socially very isolated. At work I often work on my own. The days of meeting people at the school gate have ceased. We live in a small village with no pub or shop. I might see a member of my family every few months. I don’t go to football matches now. Climbing trips have ceased. Team Sport is a thing of the past. Meet ups with my friends have completely dried up (it’s been a drought). The last night out with friends was in 2015. We occasionally go to a concert or wrestling show but because of our son’s Aspergers we tend to limit public exposure to a bare minimum.
You get the picture.
As a result I have completely lost my social confidence. When I do bump into people these days I am so painfully wooden. Can hardly string a sentence together. End up just being quiet and completely stressed out. Shackled with self doubt – I’m not sure I could even manage to talk to the plant in the corner now.
I am so lucky to have a fantastic son. I am also fortunate that I have adjusted reasonably well to spending large chunks of the day so isolated. So if I get completely cut off from society then so be it – at least I won’t have to get stressed out about being so wooden. But it does bother me that so many good people have experienced something similar or far worse. Isolated and cut adrift in an increasingly crowded world – alone and in need of company. I really don’t think the scale of the problem has been fully appreciated yet. If you are in that situation my heart goes out to you and I send you my love.
For me I have a job to do for the next few years. Give son the best childhood possible. Nothing else really matters. If and when he has left the nest then I will worry about the other stuff. Hopefully my hermit beard won’t be too long by then. I might even get round to working out how to play Fortnite properly. Hugging trees can be fun as well I hear.
Complete white out. Zero vision. Your boots constantly struggling to find grip on the sheet ice. All you can hear is the wind howl and your rasping breathe. Somewhere to your right are bone breaking crags, to your left a 200 feet sheer drop. Holding the ice axe waiting for the inevitable fall. The trail has disappeared. The map is useless. The compass won’t give an accurate reading. Alone. Are you too far right or god help you …. too far left. Too late to turn back. Your only guide is to follow the sharp slope upwards to the summit.
The delights of winter mountaineering. Or is a metaphor for life. Disorientation, lost, no idea where your going, unattainable goals, alone, no plan, fear and panic.
Then hope. A kind word. A caring hand in the dark. Brief enlightenment.
The clouds briefly part. The beautiful mountain summit reveals itself. You survived that crisis. Panic subsides. Your pounding heart starts to ease. The break in the clouds is short lived. But you have a path. You have a direction. You have hope. The climb continues.
We had a large thunder storm pass over this afternoon. The cat was taking no chances. After the first bang he made his way to his storm bunker.
Unbelievably the early morning cinema screening was very full. The cinema was mobbed. Not seen crowds like that since the ‘Everything for a Pound’ Store had a sale. It’s not a statistical significant sample population but from the early morning hordes I guess that The Avengers movie is going to pull in some astronomical numbers.
And yes it is an astonishing movie.
Yes the crowds unsettled our son but we took our customary place on the front row so no one could be in front of him or to the left of him. It’s so close to the big screen that I come away feeling like I’ve been chewing on magic mushrooms but it works for him.
For 3 hours we both lost ourselves in the Marvel Universe. All our problems and anxieties forgotten. Heroic deeds fill your heart. With even a bit of free grief counselling thrown in by Captain America. But sadly it doesn’t last. You eventually find yourself back in the same place with the same issues.
In fact it feels like we have regressed. Fifteen months ago we eventually secured some anxiety counselling for our son. I say ‘we’ as the fight to get some help started while my partner was still very much with us. It seemed to really benefit him. Progress was starting to be made. But now due to cutbacks that support has dried up. The anxieties are building and it feels like the system has cast him adrift again. We have been lucky really – far too many families get zero help – all they get is patronising comments from politicians who have no interest beyond their off shore bank accounts and rich friends.
So as the thunder rumbles on we try to fight demons. Health anxieties, fear of death, school anxieties, friend anxieties, social anxieties, reading anxieties, fear of being left alone anxieties…..
I’m no psychologist. I’m no health professional. I’m no education specialist. I’m not a grief counsellor. I’m just a parent trying to figure out this increasingly bizarre world with no one to help guide me. Doing the best I can. Deep down this scares me as what chance do I have when I can’t even come close to fixing myself. Queue worried face. 😱
Pleased to report the immediate threat to life and property must have passed as the cat has made his way back to his favourite chair again. That’s one less worry to deal with.
The Bog Garden needs some rain to become boggy again. Maybe soon as storms are forecast. It can’t be much fun being a bogless garden.
Making friendships can be difficult for our Son. Maybe it’s part of his Aspergers, maybe it circumstances, maybe it’s something else. He loves texting a cool friend but they are separated my thousands of miles. He doesn’t often get to meet up with kids his age. Son has come across a few really nice kids. They let him tag along sometimes. He does like the feeling of spending times with friends. I think we all need that somedays.
However the kids will often talk about the stuff they do. The meet-ups, the sleepovers, the trips, the clubs and birthday parties. Stuff he doesn’t get the chance to experience that often. That’s tough for a kid. Also after a while they often split into pairings and son tends to be left by himself. You see the kids walking in one direction and son heading by himself in another direction. I can tell when he comes back that he’s kinda sad. He’s so enjoyed the time with them but it does make him feel lonely. Today was a good example..
As he walked back slightly apart from two of the other kids I asked if he was ok.
“I think it’s time to go Dad. I’ve had fun and they have been very nice to me. But it was getting a bit awkward as they are best friends and wanted time to themselves. I could tell. It’s time to see my best friend my dog.”
I’m so pleased he is getting a bit of time with kids his age. But I get so down thinking about the wider picture for him. I really get how he feels for one very good reason.
I feel the same with my life. I get to link with a number of really close friends online but they are many many miles away. I occasionally get the chance to spend time with some really nice people. But they have their own life’s, their own close friend groups, their own families. I hear about the stuff they do, the holidays, the nights out, the meals, the parties, the romantic moments. I’m so pleased they get to do that stuff, they are such nice people that they deserve the happy times. But it’s stuff I don’t get to do anymore. A life I feel excluded from. That’s such a lonely and soul destroying feeling. I’m old and gnarled….. that’s just tough luck for me. BUT you just don’t want your kid(s) to experience the same feeling. All we can do is crack open a couple of sodas, hit the trampoline and see how many footballs our dog can destroy today. Time to try and forget stuff.