Bit of orange

It’s been a good year for roses here but so not for other flowers. But occasionally the colour shines out. Just as summer is closing we get a couple of late visitors. They are must welcome.

Hawklad is due another home counselling visit this week. Every two weeks is the plan. Part of a long term care strategy to see if they can help him with his anxieties and fears. An attempt to help him feel sufficiently ok to venture back into the wider world. He needs that professional support. Some things are just a bit outside of my parenting skill set.

Even with that help it’s going to be a long process. We need a fair and supportive wind to help the process along.

Like in many parts of the world pandemic numbers are rising. Unlike some parts of the world, the UK is trying to navigate these stormy waters with no effective government. They have a natural talent to make things worse, to add oil onto the fire. So it’s all a tab chaotic and shambolic. The PM sticking to his whack a mole strategy. His words not mine.

I was contacted by Hawklads care team to let me know that they will have to keep assessing if the service will be able to continue in the short term. They are receiving contradictory instructions from the top. It is likely that the home visits will have stop at some point. Probably very shortly. When they do stop then they will look into things like video appointments. Better than nothing I guess but far from ideal. Hawklad really struggles with that type of thing. The worry is that if the visits are forced to stop then they will not probably restart until after winter.

It’s just one of those things. Outside my control. Outside the care providers control. We just have to make the best of it. But it does add to the feeling that a return to school is a very long way off, if at all. It kind of feels like that our castle drawbridge is being raised again. Time to start manning the battlements. That’s a bleak thought. AND that’s why seeing a couple of small orange flowers in the garden is such a big thing for me.

The shape of bread to come

See the sun does shine in Yorkshire – occasionally.

How can baking be so hard. Everything seemed to be going so well and then you end up with very odd shape bread. One day, one day.

Maybe I can blame these baking woes on a lack of sleep. At least it ended up tasting ok. So it’s kind of a result.

I was sat drinking my herbal tea and having my misshapen bread with some hummus. Really, is this what life has become….. sudden urge for proper coffee and a sausage roll. But that is life currently for me. I might wish for something else but circumstances dictate otherwise. Wow that feeling could cover so many things. But at that precise moment my eyes wandered to a book on the table. A book about Ski Jumping. One small dream is remembered.

I have always wanted to go to and see just one Ski Jumping competition. Have never got round to doing that. Circumstances have repeatedly prevented that. Now as a single parent with a son who struggles to get to the front gate of the house, those circumstances seem to be even more insurmountable. Another winter will pass. It’s definitely not happening this season. Maybe not for a number of years.

Yes it’s a little deflating but don’t get me wrong. That dream hasn’t died. It’s still there. Still cherished. The future still offers hope. Just have to deal with the here and now. In all likelihood autumn and winter will see no real change in our circumstances. The next 6 months will be largely restricted to our house and garden. Very few social encounters. Single parenting day in day out. More days of dodgy bread and hummus lunches. But it is what it is. Will just deal with that. But I won’t forget those special dreams. That what keeps me going.

Seems like a lifetime

I accidentally stumbled across a social media post from a parent from Hawklads school. It contained a photo of a trip to the beach whichsome of the families had made last week. Clearly having great fun. It will do the kids so much good to start living again.

I was so happy for the kids and happy for the parents. They are really nice people. They deserve fun.

But the post brought a touch of sadness. Wouldn’t it have been lovely if Hawklad had been there. To be with kids his age. Enjoying himself. Enjoying being a teenager.

Actually it would have been good for me as well. The last time we went to the beach with other families was 2015. I’ve kind of forgotten what the feeling must be like. You get use to the isolated life style. It becomes all consuming. It becomes who you are. Back in 2015 I remember turning up. Watching Hawklad play with the other kids. The parents had a barbecue. We played games and sand cricket. Built sandcastles. We talked, laughed. We hugged.

But that was then. It’s 2020 now. Different world. It was a different world even before a pandemic. The last time I actually hugged someone was at my partners funeral. That’s virtually 4 years ago. It’s 5 years since we went to a meet-up with other families.

It seems like a lifetime ago.

Groundhog Night

Three hours sleep in two days. All of that came the night before. Surely I should be more tired. Yes a little sleepy. Bags under my eyes – that could be Soya poisoning. Much yawning but still functioning. One of those long nights. Watched happy videos to bring smiles. But eventually the iPad ran out of juice and had to be pipped some of that electricity to bring it back to life. If only we had that option.

Can’t face watching night time TV. Please no QVC or car makeovers. Sleep refusing to come so then it was reading time. A book about a failed climbing expedition. Not happy reading. Loss of precious life, loss of fingers and toes. Was that final reckless push for the top really worth it. Only those climbers will know. My view of success in the mountains was always a little different. Success was seen as returning to camp in one piece with new experiences banked – the summit was just a bonus.

The read and the slow passing night did nothing for my spirit. The clock hands refusing to push forward quick enough. The hours dragging. Mood slowly sinking as fast as my chances of getting any sleep. That feeling of being alone. The iPad still drinking in electricity so no happy videos to lift me up.

Finally the dawn breaks and I’m out in the cool, damp morning air. Probably pushed myself too hard on the exercise. My body didn’t need that but for some reason my mind decided that was what was needed.

Now the day is here. Staggeringly I am not feeling tired. The iPad is back in business again. Quick video, look at some photos. Then a hot drink sat watching the moody Yorkshire skies. My mood lifted. Hawklad will soon be up. Not feeling alone. Almost time to rumble. The day beckons.

Let’s hope it’s not Groundhog Night.

Another day

Another hot one. One more day then proper weather sweeps back in.

Maybe it’s the heat. Maybe it’s overthinking. Maybe it’s these crazy times. Maybe it’s lack of sleep. Maybe it’s feeling just a little bit alone in this fight. Maybe it’s just one of those days. But today has been on off day. A down day. A misfiring day. A depressed day. I get these days. Not as many as I used to but it doesn’t really help when they strike. These days it definitely feels like good weeks and bad days. So it’s a bit of a surprise when the bad days sneak up on you. All the more frustrating because there is not a definite cause. No warning. Just wake up feeling this way.

A day when

  • The mojo has gone on holiday.
  • Life feels hard and unremittingly uphill.
  • Just feeling yucky.
  • Everything is an effort.
  • The daily workout was completed but never got out of 1st gear.
  • You just want to sit and slouch.
  • That smile is an effort.
  • Routine things become annoying.
  • Those various body injuries just hurt that little bit more.
  • An old photo which made you smile yesterday today brings a tear.
  • That inner demon is just a bit stronger today. The negative voice is just that bit louder.
  • Definitely a little snappy and quick tempered.

Basically low and deflated. It will pass but until it does then it’s no fun. I was going to swear but I won’t. Let’s get through the day and see what tomorrow brings. If it’s the same feeling then maybe a bit of shock therapy is required. I think I will ask son to fill a huge bucket with cold water then fill it with ice cubes and whatever else he fancies. Then he can dump it over me. It worked last time I was like this, maybe it will work again. Only one way to find out….

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.

Plant Life

It doesn’t look the most impressive plant but it certainly has meaning.

Something like 18 years ago we had just moved into the house. The garden was so badly overgrown. The lawn was more like a corn field. Took us three days to cut it. Having revealed the garden we found it appeared to have no flowering plants. Many weeds and one Apple tree. I guess that’s called a blank canvass.

A week or so later the village had a plant fare and we nervously ventured down to it. We knew hardly anyone there. We did meet some lovely people. Unfortunately over time those we get to know have either left or sadly passed away. Can’t remember much about the actual fare apart from my partner telling me that we needed to buy something. I randomly picked a hand full of plants. As we were late the selection of healthy plants was completely exhausted. Our new plants looked somewhere between decidedly unhealthy and dead. They didn’t survive long. All except one and here it still is. Who would of thought that the most sickly looking plant would end up outliving my partner and a number of the residents at the fare. Life is definitely bizarre and it is often so unfair. But that is life. We need to treasure it, treasure all life.

Swimming

Yesterday the sun was shining and the garden was filled with colour. Today the sun is gone. It’s cold, very cold. A biting strong wind blows across a grey landscape.

The weather matches my mood…..

After days of care free smiles, today the smile is a little forced. Thoughts are a little darker. The world seems a cold and increasingly lonely place. Rather than thinking of memories as precious blessings, all too easily my wanders to thoughts of what has been lost. What is no more. Waves of self doubt crash in. Problems outweigh opportunities.

But that’s life. Just like the weather you get good days then bad days. In my case the secret is to try and make sure it doesn’t turn into Good Days and then Bad Weeks. That’s the risk with my depression. It’s so easy for me to fall into that negative mindset. Nothing comes after the Bad times. Life becomes a never ending slog.

I look out of the window at the awful weather and what do I see. Yes no sun, but the white and red flowers are still there. They still have colour and beauty. That reminds me that the weather may change but hope can always remain. Got to keep working at this thing called life. Bad times will pass and the sun will return. Yes even in Yorkshire.

As I get older, I become more convinced that life, bereavement, whatever journey I’m on is like swimming. Swimming to an ever receding islands. As hard as I swim, that island can never be reached. If I stop trying then I will definitely start to drown. Somedays the waves are heavy, the tide against me. Swimming is so hard. But if I keep going then eventually the waves will ease and that tide will change. Flowing in my direction. Still have to work but suddenly swimming becomes enjoyable. Enjoy those moments, live in the moment.

So today the swimming is hard work. But got to keep going. Got to keep aiming for that island.

Old moon

A couple of full moon photos from last week. My poor old iPhone tries it’s best.

I remember looking up at the moon. I was lying on my back on the cold patio trying to keep still and give the camera phone a chance of trying to focus. Anyway I was looking up at the moon and thinking it was stunning. I really hoped that my partner could be seeing this as well. Maybe she was? Was she seeing it from a different angle? Was she looking up at it from one of her favourite places. Was she above the clouds?

These days I frequently look at things in a different way. For a long time after my partner died I felt bad about looking at beautiful things. Sunsets, landscapes, the Sea, our Son playing. It just wasn’t right that I could and my partner was missing out. She had been cruelly denied this chance. Her time ran out.

But slowly that feeling of guilt started to ebb.

Now when I look at beautiful things, I try to look that little bit harder. Look for just a few moments longer. Truly embrace the moment. Because now I’m looking for the BOTH of us.

Back to the moon. After a few minutes I was becoming distinctly uncomfortable. My back is not designed these days for lying on a cold, hard surfaces. Then a thought. What was I thinking about. My partner was the sensible one. She would be sat inside. Occasionally shouting “that’s very nice Dear”. She would not be outside freezing her butt off. She would be warm inside with a glass of something, watching one of her favourite movies.

That’s a view she would be happy with.

Sitting here

It’s early morning and I’ve just finished my workout outside in the breezy Yorkshire air. Son is still asleep safe inside. I’m looking out into the distance and seeing no sign of human life. In the far distance you can just about see the main road leading to the coast. At this time of year it should be nose to tail with caravans and cars packed with excited families. Today it is completely deserted. I patiently waited for five minutes. Not one vehicle. Then I fall backwards and look at the heavens. An empty sky. Yes clouds and fleeting glimpses of lukewarm sun, but not one single aeroplane. To the East we can see one of the main air corridors. We often excitedly get the Flightradar24 app out and check where the many planes are heading. America, Canada, Europe, Asia. Today nothing. Not one single vapour trail.

Has the world stopped turning?

Three years ago our little home stopped dead yet the world kept turning. It was a harsh lesson. Even when good people leave us the vast majority of the world is oblivious. In the days after the funeral I would question

Why has the world not stopped…..

Well it appears to have stopped now. Yet does it help. NO.

Later I am inside listening to music on the radio. It’s a sobering experience. Usually listeners are requesting celebratory songs for weddings, anniversaries and birthdays. Today the airwaves are frequently filled with songs dedicated to rock lovers who have lost a fight with an unseen new enemy. My heart goes out to you all. It was only a matter of time before someone requested Alter Bridge and Godspeed. The finest song I’ve come across about loss. My bereavement go to track.

Test me once again
You know I didn’t do anything
Set my life on low
You know I could have had it all
Drifting out of place
With no direction and no escape
Set out all alone
Oh to a place I don’t belong
Without you
I know that I must change
Without you
I’ll never be the same
No
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Test me all the way
Surely you know
I’m not afraid
Prove now once again
That I will never see the end
Without you
I know that I must change
Without you
I’ll never be the same
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Cast away
Our regrets and all our fears
Just like
Like you did when you were here
And then the days
They ran out
And then the days
They ran out
Farewell
Godspeed
And goodbye
You have lived
And you have changed
All our lives
Cast away
Our regrets and all our fears
Just like
Like you did when you were here
And then the days
They ran out
And then the days
They ran out

Lyrics by Tremonti/Kennedy (source Musixmatch)

Even after a few hours the cars and aeroplanes are still missing. The world may still have stopped. But son is finally rousing himself. Our little world cannot permanently stop. He has a childhood to live and enjoy. So one more sip of my hot drink and find that happy face. Reach for that bag of tricks we all have and find a way to shut this horrible situation out for a while. Start having as much fun as we can. Let’s keep living and hope the world starts turning again real soon.

Stay safe my friends and I really hope you find your own way to smile. Maybe if enough of us do this then we might just be able to start the world turning again.