Wembley

The Yorkshire version of Wembley Stadium. Can you spot the pet trying to once again sneak into the photo.

Even comes with a discerning crowd.

If Aspergers Parenting was a football game, well today feels like we have had a key player sent off….

I always naively assumed that if and when son got an official diagnosis then a support package would be out in place to help with his life chances. How silly of me. I didn’t count on year after year, having to fight the system. Trying to prize just the hints of support from a system which has been hammered into the ground by a Government which only looks after itself and it’s friends. To summarise

  • A school system repeatedly fails kids who do not fit into the factory production line which is the UK school system. Two options, either fight for a place in one of the few special schools or accept your child being bracketed as ‘low attainment’ and consigned to the bottom set. The school will then forget about the child and then pat itself on the back if the child gets just one certificate.
  • Letter after letter, call after call trying to find a clinician who is prepared to look at your child’s case.
  • Passed from specialist to specialist who don’t have the time or resources to add your child onto their case load.
  • Service after service cut by a Government which believes that only the rich should be able to buy access to essential healthcare. A Government that sees Mental Health as no more than an excuse to avoid work. Let’s not forget they described a child taking time off from school after a bereavement as an extended holiday.
  • When you do finally get access to a service you then join the growing waiting list. Finally when your child is seen it’s virtually always by someone new, with no understanding of the back story.
  • Finally your child starts to get older and the few services he has had access to are withdrawn as he is now above the age threshold. You see the Government likes to think that after 13, services are pointless and far too expensive. Adults have to sort themselves out.

We have had three brilliant exceptions to this.

  • A Clinical Psychologist who worked with out son consistently for three years. She even delayed her retirement to ensure son’s diagnosis was officially approved.
  • An Occupational Therapy service that worked with him every few months to help with things like coordination. A service which was cut when he reached 13.
  • A wonderful Nurse Counsellor who worked with our son for 3 years helping with his anxieties and joining the fight for additional help.

We entered June 2020 with just the Nurse Counsellor left from his entire care package. And now the player is sent off.

The Nurse phoned today to let us know that she had been reassigned. She is great and some other kids are really going to really benefit from her time. We are eternally grateful for everything she has done. She is going to desperately try to find another clinician to take over from her. I know she will really try. We may get a replacement. The Nurse was the only clinician he really has connected with. Those connections are rare for him. Making a new connection is going to be tough and most certainly not guaranteed. As the Nurse said it feels like we have lost the progress made over the last few years.

Today feels like one of those tough parenting days. As a friend wrote recently we pick ourselves up, dust ourselves down and start again. We most certainly do. But it feels like it’s a much depleted team taking on the struggle. Forgive me I’ve not used a Lord of the Rings metaphor for a while. It feels like the heavens have opened. The hordes are massed outside the walls and I’m stood alone on the Battlements of Helms Deep. Just me protecting our son now. Doesn’t feel like Gandalf is riding over the horizon in the morning. I’m going to have to just find a way of doing this myself.

I’m off now to kick the ball into the net a few times. Maybe with a bit more force than usual. Then the fight starts again.

Fragmented

Good to see the local motorway is busy…. It’s still too busy for our son. I got special dispensation to step 10 yards out of the front gate to take this photo. Life on the edge.

It really does feel a bit like that at present. On one hand we have what apparently counts as our Government rapidly relaxing restrictions and on the other hand kids like our son….

His social and health phobias are in a pandemic fuelled maelstrom. Every few minutes he feels the need to wash his hands. To repeatedly rinse his mouth out. The fear of germs and hidden dangers becoming a real nightmare for him. He struggles to touch items like taps and handles. Even putting potentially unclean shoes on is a challenge these days. Deliveries have to go into garage quarantine for at least 4 days. Clothes need changing every few hours. And then another spanner in the works. The old house boiler completely failed. So a service call out is required. It’s now way beyond a temporary Dad patch up. That means an additional new threat to sons safe area. A house visitor! After much discussion we agreed a plan. The service engineer would come into the house only via the back door. The engineer must wear a mask at all times. I will keep 2m away from the engineer at all times. When the work is finished we will effectively lock down half of the house. We won’t venture into the areas the engineer visited for three days. Not ideal but it’s a plan. Son’s stress levels will rise but hopefully not too far. The damage to his safe area minimised.

Yet individuals like our son are expected to just re-enter the world by July 4th. The date our part time PM is declaring as the day he defeated the virus. The date he can heroically restart England. It’s perfectly fine to open overcrowded public schools in September. A few more hand sanitisers in the corridors and relaxing the rules further to allow for even larger class sizes to cope with increased teacher sickness is now the best way to deal with a pathogen. We are told ‘everything is now fine’ by the very leaders who have been proven to be wrong on virtually every single major decision they have made over the last 6 months. The very leaders who now widely seen as charlatans and pathological liars. People see this. Our son sees this. This just adds fuel to his anxieties. It’s making a bad situation even worse.

So when England reopens on the 4th July a small bungalow in Yorkshire will not. It stays on lockdown until son is able to face the world again. Who knows how long that will take. Much patience is required. We won’t be the only family facing this prospect. Again my country further fragments. I’m not entirely sure it’s ever really going to come back together again.

Lost Friends

And another rose photo…. I have to say out garden is blessed with weeds and roses. Each year they appear and they always feel like the return of friends.

Last night I had another weird dream. This time it took me back to my university days. It started off by showing that my career path had been influenced by a slip of a pen. I had applied to do a degree in Economics but had been put on a Home Economics course. A degree in cooking for the worlds worst chef, OK.… But the main part of the dream was centred around friendships. All my college friends were on the course but no one recognised me. As hard as I tried, nothing. I was just blanked by them. Most unsettling.

As ever the weird dream put an end to my nighttime sleep hopes. So it was time to drink tea and think. A quick search on the internet found recent pictures of some of my old college friends. I just about recognised them. Would they remember my face which is perfect for radio – probably the same I guess. But here’s the key thing. These were really close friends. Yet when was the last time we met up in person. Our careers and life’s moved us apart. I’m not sure it was even this century. But it doesn’t stop there

  • I haven’t seen my schools friends since I first left my childhood home to go to University.
  • One really close school friend I did keep in contact with. We would meet up every few months. But again our life’s drifted further apart and the last time I heard she was living in Israel. That must be over 20 years ago.
  • My climbing friends still keep in touch via letters. Yes letters – how old fashioned does that sound…But we haven’t been climbing together in 6 years.
  • I still keep in regular text contact with a good friend who I went to football matches with. But I’ve stopped going to games now due to circumstances, so we don’t meet up in person.
  • Work and parenting friendships have come and gone.
  • Friends in the village have dwindled. Some have moved away, some have sadly left this world.

So in terms of actual physical friend meet-ups it’s down to one chap I normally work with. He occasionally drags me for a game of golf. There are so many stories right theremy golf career is about as good as my cooking career. But due to the pandemic I have not seen him since the start of March.

Life and my choices have sent me down this path. Living in a rural area, bereavement, single parenting and autism in the house have all contributed. But it is was it is. A huge element of personal choice comes into the mix as well.

Yes this is sad but I am so lucky. The gaps left here have created space for blogging friendships. I’m doing the best job in the world – parenting. Job is the wrong word, it’s more a privilege. I have a great life. But I do so worry for others. Feeling alone can be such a dark place. Alone and yet claustrophobic. No one to reach out to. No one to interact or grow with. Some choose that option freely. But many are forced into it by circumstance. Illness, age, special needs parenting, single parenting, location, social factors, fears and yes a pandemic. It’s so easy and unfortunately very convenient to forget about those who drop off the grid. Last night was a timely reminder for me.

Take care my friends.

Not my berries

Wild strawberries get everywhere. Now they have found a way into the large tub which contains the old blueberry bush. This raises one of the great life mysteries. Wild strawberries are cropping up all over the garden. Even on the stone drive. Yet I find it impossible to grow them when and where I want them to. Nothing ever happens with my strawberry seeds. Most frustrating….

So officially no work until September at the earliest now. I guess it gives me more time to tend my strawberries. But we are SO fortunate compared to many others. We have beautiful memories. We have a nice (if slightly chaotic) garden with a lovely view. We are relatively secluded. Son can feel safe here. We can scrape by and pay the bills. We can still have fun and enjoy life. Yes another 3 months of this self contained world can at times seem a claustrophobic thought. But that thought is there only if I let it exist. In reality I’m losing a few brief encounters, some knee jarring runs and an occasional trip out. Counter to that – Son is gaining a feeling of security. For that security I can more than cope with a few inconveniences. Everyday we still have the ability to create memories and live out our dreams. Maybe not my frequent night dreams featuring talking cows and dinosaurs. But you know what I mean.

So let’s be thankful for what we have. Let’s use what we have. Let’s remember to live.

Let’s take the time to watch the wild berries grow…

The other thing about the wild strawberries is that they don’t last long. The are stripped bare by our frequent garden visitors. That’s fine with me. I guess they were the ones who brought the seeds here in the first place. So they grew them, so why not let them enjoy the rewards. And the answer to the great life mystery. I should leave the gardening to the experts. The wildlife. Having said that – they don’t seem very willing to cut the lawn.

Pathway

The gap between the hedge and the Apple tree has basically disappeared. All this enforced time at home and somebody has been neglecting the garden. Unbelievable. But I quite like the results. Often it’s best to let nature takes its own course. So much easier that way as well…..

Every second Wednesday is becoming a right bind. Our bins are emptied every two weeks. This includes the garden waste bin. So when it comes to the day of putting out the bins I get that sinking feeling. Please let the green bin (now a brown bin for some reason) be at least half full. When I open the lid, I want to see plenty of grass cuttings, hedge trimmings and pulled up weeds. I want that feeling of elation that comes from two weeks worth of gardening. So I can close the bin lid and wheel it out onto the road. A job well done.

That’s the theory.

In practice I open the bin lid to find its completely empty. Oh big pants. Now I feel bad. I clearly have been wearing my laziest big pants. The inner shame drives me to fill the bin before the refuse wagon arrives. This being Yorkshire means a mad couple of hours gardening in driving rain and hail. That regular routine was repeated this morning. While I’m fighting the gardening elements I can hear my Mums words echoing around my exceedingly wet head. You just need to do 10 minutes a day of weeding and you get the perfect garden without breaking your back. One day I will follow this sage advice.

So the bin was filled. It was wheeled out onto the road and it felt like that was the gardening done for another two weeks. See I never learn.

Useful Book

Yes we can do blue skies…..

It didn’t last long but it was most gratefully received.

Trying to facilitate son’s return to the big bad world is not going to be easy. It’s going to take a long time and much patience. It has to be done at a pace which he is comfortable with. That’s the plan but then the real world comes a knocking.

His fears of bugs and illnesses have gone into overdrive in 2020. Can’t think why! We have established routines for accepting deliveries and post. Any trip through the front door requires what feels like full biological decontamination protocols. It’s not really about blocking out a virus, it’s about managing anxiety.

Over the last three months we have managed two very short circular car drives. But now we face our first real test. A phone call from my garage telling me that finally an essential car part has made its way from China. So it’s time to get the car’s breaking system fixed. So on Monday I have to drive 20 miles, drop off the car and pick up a garage pool car. Then later in the day return to the garage and pick up a fixed car. Normally this process would be done seamlessly. Now it’s a logistical and anxiety nightmare.

Does son stay at home while I go to the garage? On my return I can undertake full biological decontamination. Son struggles with being alone. He will be stressed out with being by himself for a couple of hours. He will be super stressed out with my exposure to the real world.

Or does he comes with me? Yes that avoids the stress of being alone BUT…. Suddenly son would be exposed to the real world. And lots of it. A garage filled with strangers. A pool car which will have had other people sat in the seats. Touching the surfaces. Another stress inducing nightmare for him….

So currently I don’t know what will happen on Monday. I’m getting stressed out trying to run through all the possible logistical permutations. But that pales into insignificance to the bucket loads of stress which will be hitting our son. Again I can’t find a helpful section on this in the How To Be Parent Book. One day someone is going to make a bucket load of money writing this. Well if they could get it published within the next few days you can count on one sale from me…..

An old trip out

This is from a couple of years back. A two hour car drive to the west side of Northern England. The Lake District. A place that sometimes feels just a little bit Alpine.

We stopped off at Castlerigg Stone Circle. One of the countries finest historic sites set amongst the countries highest mountains. It’s was erected in the Neolithic period. Sometime around 3000BC. Yes even before I was born. It’s one of those special places. Yes it’s popular picnic site now but it still has an atmosphere. It just feels different. Many years ago after a days climbing, I spent the night here. Just sat on the ground in the middle of the circle. I’m not sure why. Maybe waiting for a ghost or something. Didn’t see anything but when I walked away after sunrise, I had never felt so calm and relaxed. It’s that type of place. I could so imagine a great fantasy author coming here for inspiration.

What struck me about the second photo is the look on my two faithful companions. New visitors had just arrived at the site. The four legged one, I suspect was eagerly checking them out for food or toys. The young boy was definitely not so eager. Once the site started to fill up a little then it was most definitely time to go. Crowds and Aspergers are not great bedfellows. That’s why the time to visit places is such a delicate scheduling task. The choices tend to be

  • Go when the weather is bad,
  • Go just before they are closing,
  • Arrive super early. Try to get round before the masses start to arrive.

As a result visits tend to be fleeting. They also sometimes require really early starts. In this case we set off at 5am. That’s not ideal but needs must. One definite advantage. Nothing better as you drive away from a site and passing the traffic queues waiting to get in. Does that thought make me a bad person….

Quarantine and Mental Health

So pleased to have another wonderful post from Katie and Evee for you. Can’t thank them enough. They also have just posted something from me on their site as well. If you get the time please check it out.

Thank you so much.

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Our current Quarantine Routine, looks a bit like this:

– Katie wakes up and makes us both a coffee and works out

– We read, write, blog or go on walks or bike rides.

– Evee works out

– We cook dinner together

– We have our own evenings where we chill out, talk to our friends, or watch Netflix. (Evee falls asleep significantly later than Katie (usually with the odd noise complaint thrown in!))

At the beginning of quarantine, there was a clear and obvious push for people to make the most of this time. People were learning how to make banana bread, teach themselves how to do handstands, and learn Spanish or Italian. We also had good intentions; to paint, write, eat completely cleanly and have a strict regimented workout plan.

When we couldn’t bring ourselves to be productive, we were filled with guilt at the thought of wasting this precious gift of time ( https://thegriefreality.blog/2020/05/06/the-gift-of-time/ link if possible ). It was almost too easy for our minds to wonder back to the days of our own lockdown after Mum’s funeral and the depression that followed. During these days, counsellors encouraged us to mark small things as “wins”: showering, exercising, or eating healthily. But also, to the even smaller wins, like waking up in the morning, making the bed.

After our mum passed away, we were completely alone. As said beautifully in Gary’s post, there does come a point when people stop checking in and stop asking how you are. Apart from a few golden people, many individuals you thought were going to be with you until the end, become memories as well. It is a desolate place to find yourself in.

Thankfully, we have always had each other, and through trying to look after one another, we found ways to build ourselves back up.

Simple acts of self-love may appear futile or irrelevant when the future holds so much uncertainty, but we cannot imagine what our health and wellbeing would look like without them.

Lockdown has been a journey and has impacted our mental health, alongside thousands of others’. For us, it felt hauntingly similar to those grey days of 2018 that bore witness to some of the darkest moments of our lives. But through self-care, we learnt self-love.

Self-care grew to become an essential part of our healing and an ongoing exercise for our health and wellbeing. It is a wonderful thing to do that we strongly advocate, and promote heavily on our blog: Plant those little seeds of self-love into your body and mind.

As with any new exercise, it has been a difficult lesson to learn. But today when the world finds itself in so much chaos, we know to focus our attention on making ourselves feel happy and healthy. Eventually, our calm approach to life and clarity come back to us, and we ground ourselves once again.

One simple act of self-care is to sit in the bath, with a face mask, cuppa tea, bubbles and a coconut oil hair mask. It truly is amazing how much these luxuries make a huge difference to our wellbeing.

We have linked a post of little self-care tid-bits, everyone can do; it doesn’t have to eat up too much of your time. (if you could link this post https://thegriefreality.blog/2019/04/03/i-dont-self-care/ that would be wonderful ) It can be as small as making yourself your favourite tea before bed.

Hold tight, eventually, the hustle and bustle of normality will resume, and when it does we hope you carry forward these acts of self-kindness. In doing so, we have no doubt you’ll be more than capable and prepared for it.

Katie & Evee x

Building Bridges

A fine northern river. Many bridges connecting both sides of the city. Without those bridges and the city is split asunder.

Son do you want to go out for a blueberry ice cream?

No it’s ok Dad.”

Son do you want to go and visit your Auntie. We can keep 2m apart when we get there?

Not this week.”

How about visiting your favourite toy shop. It’s open?

No I’ve got plenty of stuff to do.”

What about going to that remote walk and going to see that Neolithic site. We can stop off and get one of your favourite pizzas?

No, maybe some other time.”

These are some of his favourite things. In 2019 the slightest mention of any of these would have sent our Son running towards the car. That’s all changed now. He has most definitely burnt his bridges with the world. He is also in no rush to start to build them again. Many people will be in the same boat. We have a community split asunder. Split in more ways than this….

I understand someone from the so called Government was not happy with pupils been kept off school. Kids should be forced back to schools as it will be good for them. They don’t have the slightest idea about Mental Health awareness. Good job we are ignoring what they say.

It’s going to be a long road back for some. Certainly for our Son. It’s pointless putting a timescale on it. It will happen when it happens. Until then the bridges will remain down and we make the best of it. I’m looking out across the next door farm and into the distance. We are so blessed. We certainly can make this work for us. No rush for bridges here.

The Dads

The ‘Stay at Home unless you are a pompous cretin called Cummings who thinks he is the UK Government‘ message has been on for months now. Ok the social distancing thing is starting to fall apart but for some of us, it’s still very much in force. One knock on effect of that is that you end of taking photos of the same thing, over and over again. SORRY. More cows. One day maybe we might get a giraffe or a camel.

This post is a tribute to Dads. I don’t need to say sorry about that.

Dad in Art I have to create some characters for my stop motion cartoon project. I have to think of some designs, sketch them and then cut them out. They will then become the stars of the cartoon. Any ideas?.”

Well you want to make them simple to make. What about superheroes. Make a simple version of Captain America and Ironman. Lots of muscles, great costumes and heroic.

That gives me a great idea. Let’s go for the complete opposite. No muscles, no dress sense and bad haircuts. Let’s go for Dads…..”

So here goes. Our little tribute to all the Dads out there. I’m trying to work out which one is me…. Maybe it’s the one still to be made which looks just a little like Thor….