Money, money, money

Clearly the blueberry has given up on this Yorkshire Summer and just assumed it’s autumn already.

MONEY. Not listened to that Pink Floyd song in ages.

Get a good job with good pay and you’re okay….

That’s how the song goes. It’s funny that I love Floyd but this is the only song of theirs that I don’t like. The sound of the cash till just annoys me. It’s kinda nice that when I finally got to see them live, I can remember the concert so well yet I can’t remember them playing this song. It’s so good when the mind works like that.

MONEY. Before the world changed in 2016 we were doing alright. Finding a way to maintain two quite well paid jobs while making sure one of us was always there for Hawklad. It wasn’t easy and took a shed load of planning, but we found a way. We had a nice house, two cars (our jobs headed in different directions) and we could afford a trip to Switzerland every year. We tried to save for the future so we didn’t buy much. But it was a comfortable life and we could certainly pay the bills.

Then the world suddenly changed. I’ve just realised how lame that phrase sounds. Took me long enough. Seismic Rupture might be better. Need to think about that…

MONEY. The last thing you should be thinking about after a bereavement is money. But far too often MONEY quickly looms over you when you are at your lowest ebb. Bills still have to be paid. Food has to be bought. The government wants its pound of flesh, death brings the delights of Inheritance Tax. Two incomes suddenly became one. Even that one….. Single parenting, Single Aspergers parenting, Single parenting to a 9 year old who has just lost his mum. My job became impossible to maintain. Suddenly I was scrambling for a part time job which worked round Hawklad. MONEY became a very scarce commodity. Trying to get my head properly round these scary things is the last thing I needed when my world had just been shaken to the ground. Trying to look at a shrinking bank statement is bloody hard when it’s done through crying eyes.

That’s how it’s been with MONEY ever since 2016. I was so lucky to find a job which was flexible enough to fit round the single parenting gig. But I was still trying to pay the bills. Working out which repair jobs would have to be kicked into the future – which is most of them. Only trying to spend on the absolutely essential stuff. Funny thing is how often schooling costs suck up any spare cash. Holidays are just not happening – the last one was back in 2015. When we do have to buy items the first point of call is always the previously enjoyed or damaged sections. Our one extravagance, concerts, are always in the much cheaper – restricted view areas. We never turn down hand me downs. I’m currently looking at an exercise bike which was surplus to someone’s requirements and is held together with copious amounts of electricians tape.

MONEY. How needs it. With hindsight it’s clear that we are so lucky. So many are in a much worse position than we are. I’ve found a job that kinda fits our lifestyle. We have a nice house and garden. Live in a lovely area. Friends are wonderful. Financially it’s challenging but we are just about stable. Money helps but it doesn’t buy you happiness. Thinking of Hawklad, memories and friends – money doesn’t buy you those things.

Life snapshot

The Aspergers life can be racked with anxieties and obsessive behaviours. Additionally Aspergers can frequently coexist with OCD. Add the death of a mum and both grannies. Then on top of that you add a pandemic. Something has to give with that kind of pressure building up. That’s what our son is dealing with and it is so very tough for him. What does that mean in practice. Well here is a snapshot of life and the impact it has on him.

Every ache, every sneeze, every spot, every pain is seen as a potential sign of a serious disease or the C word. Anxieties bring on indigestion and constipation. These are then seen by him as more potential warnings of serious, life threatening health conditions. The natural response was to frequently wash his hands. It was both to cleanse his hands but also an attempt to pour water on the raging anxiety wildfire. Washing to the point of red raw skin. These issues have existed for years but slowly during 2019 slow progress started to happen. The hand washing was just about brought under control. Then the pandemic hit. The progress was instantly lost. Suddenly the months of reassuring talk a out avoiding serious illnesses, the bodies capacity to fight back and the advances in medical science are basically blown out of the water. The problems started to mount up again and escalate to new heights.

  • Hand washing every few minutes. From 15 second washing now to washing for minutes at a time.
  • A reluctance to dry washed hands as towels might be a source of germs.
  • Harmful germs are seen to exist everywhere. Suddenly it’s difficult for him to touch taps, toilet handles and door knobs. Sheets of paper have to be left next to these so he can avoid touching them directly. Even pulling on a shirt may result in the potentially unclean sleeves coming into contact with his hands. Shoes have to be put on without using his hands.
  • iPads and joysticks have to be washed frequently and definitely before he touches them. It’s the same for things like pens.
  • When he strokes his pets he will immediately run to wash his hands.
  • He needs to see evidence that I wash my hands before I touch any of his items.
  • Clothes have to be frequently washed often multiple times a day.
  • Outside he is constantly looking out for flies and flying bugs. If they come too close then he will need to go inside to wash.
  • He has to have his own seat and no one is allowed to touch it. If they do then the seat has to be cleaned.
  • When he goes out the the front door then he consciously tries to avoid walking over any areas that the postman or others might have walked across. When he comes back in them his shoes will need to be completely cleaned. If he ventures through the front gate and into the outside world then on his return he will completely strip, shower and change to new clothes. Those rules apply to me as well.
  • Mouth-washing and gargling is frequently repeated during the day.
  • Any item which hits the ground (inside or out) will need to be deep cleaned.
  • Any new food items have to go into the garage and complete a quarantine period if at least three days.

This is daily life in our little home. I do my best to reassure, reason and modify behaviours. But it feels nothing more than trying to plug a leaking dam at present. One hole maybe plugged but in the meantime another two new holes have appeared. Counselling was there but government cutbacks have taken their toll on services. The pandemic has temporarily suspended specialist help. The result is massive backlogs and no access to help. These are tough times. For him and yes me as well. As a parent you feel helpless, definitely so underprepared for these challenges. But we keep going. We pick ourselves up and go again. Yes we will get there. We will. But it will take time. Realistically maybe well into 2021. In practice timescales don’t matter, we take each day as it comes, fortified by the love of friends.

Meaning of life…

Fast coming up to four years since my little world changed forever. One day maybe Hawklad will write about his feelings. I won’t try and second guess them or put my words into his mouth. So it’s time for a bit more me, me, me….

2016 sent me into some really dark places in my mind. My life was shaken to the point that the foundation’s crumbled. Those dark places are scary and very lonely. I felt completely helpless and alone. I was suffering in silence. Unable to think straight and utterly disoriented. Thankfully I never got to the point of suicidal thoughts but I now better understand why far too many sadly do.

When I did pick up the courage to admit this what did I find. I quickly realised who were true friends and who where not. I found a health service starved of resources and with little interest in mental health. The health professionals I saw operated from the same care pathway protocol. Ask SIX questions to determine if I was suicidal. Once suicide was ruled out I was prescribed some antidepressants and sent on my way. There should be many more options on the care pathway, but these require funding which is just not available. I’ve still got the unopened boxes of antidepressants somewhere. Clearly that pathway didn’t work for me.

What got me through those dark times was our son. I had to give Hawklad the best possible childhood. I had to be the very best parent I could possibly be. I had a purpose. That was the key, A PURPOSE. A meaning for life. A reason to live. Without this I dread to think how much darker those dark places would have been. Things like antidepressants would have just been a short term fix. A way to temporarily mask the real emptiness. It would have been the same with things like alcohol, or gambling or splashing the cash on a new car or big television. Just short term fixes. The only way they would have worked for me would have been to continually try to top them up. Continually trying to hide the real underlying issue. The need for a reason to live. A reason to pick myself up again every time I fell.

So looking back my dark places were fundamentally about not being able to see a reason to live. A meaning for life. Bereavement masked them from my view. Suddenly I had no dreams, had no reason to endure the pain. As soon the parenting penny dropped they slowly started to dissipate. Life opened up again. Four years later I believe that I am living again.

Differences

Wild Strawberries growing under the blueberry bush. Certainly wasn’t expecting these to grow here but with an open mind, this is such a result.

The decision to abandon mainstream schooling is in our son’s hands. It’s his life. His risks. His anxieties. His dreams. His future. So ultimately he decides. If it was my call then I’ve made my mind up. It would be homeschooling from September. That viewpoint has hardened with the last two communications from school.

The first was a summary of the schools position. Basically son is low attainment and has significant educational needs. Progress will be difficult. His educational needs are best met in the bottom set. With effort he may still be able to get a few qualifications. He is best following the normal teaching programme with no specific interventions (which would eat into tight school budgets).

Ok….

Then the next communication was his school report for the year. It painted a slightly different picture. To quote a few phrases from his individual teachers

  • Strength for creative writing,
  • Worked hard to produce some fantastic work,
  • Excellent attitude,
  • Will progress very well in subject,
  • His remote learning has been great,
  • He is a star,
  • Class work of the highest standard,
  • Superb young historian,
  • Considerable talent in the subject,
  • Very good understanding of the subject,
  • Pleasure to teach.

Ok….

Two conclusions here. One is that the report comments are standard across all the kids and so they mean nothing. Just a way to keep parents happy.

OR

The report comments are the reality and something is seriously wrong with schools overall assessment.

I strongly suspect this is a common pattern across the country. It mirrors current government thinking. If thinking is the right word to use. Basically kids with educational needs do not fit neatly into the factory production line educational approach. Minimise input costs to generate a set and limited output. Discard those items which fall out of the narrow design specification. Educational needs equate to additional teaching costs which will not be funded. Thus the best approach is to dump kids with Autism, Dyslexia, Dyspraxia, ADHD, disabilities and mental health issues into the bottom set. Conveniently forget about them. If these kids then get the odd qualification out of the system then the authorities can pat themselves on the back after a job well done. Let’s not forget the important thing, all this delivered all so cost effectively.

Maybe I am being cynical but that’s the reason I am definitely falling into the homeschooling camp.

IT

Weather and more weather. Looks like an incoming horror storm.

Son was trying to understand why Stephen Kings ‘IT’ Book was not a great choice for a school book. I suspect it will be making an appearance on the school system as soon as I turn my back.

Dad do you remember that time I got you told you off not the teacher.”

How could I forget it.

It was very funny.”

******

I think that he was about 7 and in class his teacher asked what things the kids watched on TV. Most of the kids mentioned things like football, Peppa Pig, Dora the Explorer, Spongebob and Finding Nemo. That was until it came to a certain boy

My Dad lets me watch Dracula, Frankenstein, Ghost and Zombie movies…”

Understandably Teacher was not impressed. So I was asked to see the teacher after school. I was suitably nonplused until the penny dropped. Yes that is true but son failed to mention the fact that these were all with Scooby Doo….

And more school at home

The weather has definitely changed but the school at home project chugs along. It will do until the end of the third week in July. After that the so called government is telling parents to send their kids back to school in September with minimal additional safeguard, as it is completely safe. Let’s see how many kids do return….

That’s a thought for another day. Back to the present lets see what I’ve learnt from this weeks school at home project. Remember it’s not true Homeschooling, it’s schools version. They are two completely different approaches.

  • Trying to teach basic cricket skills is no fun during torrential rain and a thunderstorm. Unfortunately the house does not feature an indoor sports hall facility.
  • Clearly the Games Teacher and a certain Dad disagree on what constitutes a good bowling action in cricket. The game must have changed since I was a kid.
  • Old school French to English dictionaries have so many pages yet they don’t seem to have the exact word or phrase you need.
  • School repeatedly sending an email out to pupils with the title ‘Important information about Careers, please read‘ will mean that the email is never opened.
  • Another week and another Food Technology lesson focusing just on puff pastry. As son says “I don’t even like the stuff so I’m never going to eat it. This is a waste of time…”.
  • The school has a really good online teaching infrastructure. Probably as good as any UK school. So it’s so frustrating that with a few teachers we still have to print out a copy of a sheet. Son fills it out by hand and then has to take a photograph to send it back in. What a waste of paper.
  • Getting no feedback on a piece of work does not really help.
  • Drama is such a great lesson when the kids get to watch a ‘live’ theatre production on the iPad. Even his Dad sat and watched Treasure Island.
  • The Dead Sea is sinking at 1m per year. That’s quicker than my football team.
  • Why do all the felt tip pens instantly turn dry and useless as soon as the words ‘for art today you will need coloured felt tip pens’ are mentioned.
  • What is the fascination of doing word searches as a teaching tool. I am trying to work out how finding a word in a sea of letters will help embed concepts and theories into a young mind. Especially a mind which sees words through dyslexic eyes….
  • Without caffeine trying to undertake long division is impossible. So the following words sent shivers down my spine. ‘Dad can you check this sum, it’s 13422 divided by 317′. Really…..
  • I have a policy of not trying to interfere in son’s work but even I have a limit. My limit is where his Form Tutor asks the kids to do 20 minutes quiet reading then take a photo of the book. Sons choice of book – Stephen King’s IT. Just NO, how about a Roald Dahl book.…..
  • Why do school keep asking a kid with dyslexia to read books without additional checks and help…
  • Fukalite is a chemical compound.
  • The school iPad can survive having a full glass of orange juice spilled over it.
  • Apparently Continent’s move at the same rate as your finger nails grow… This is still quicker than how fast my hair grows back.
  • When your son is not wearing his dark blue school blazer it would be smart to put it away neatly in the wardrobe. Leaving it on the back of a chair for 3 months and in front of a south facing window is not such a smart idea. One side has definitely faded in the sunlight. Deep joy.

So that’s it for another school at home week. We can definitely do this.

Service

Maybe I can call our little part of the world a Rose Garden. Makes a change from Jungle or Weedville.

Well so far we have survived the boiler service. The chap turned up and to be fair to him, he did use a mask and gloves. He did confirm that it wasn’t me being a muppet. It had fuel. It was turned ON. He explained that it was the oldest boiler he had seen in ages. Possibly over 40 years old. It’s poor motor had finally died. Unbelievably he found a replacement motor in the van that just about fitted. So with a hefty bill winging my way he departed. Apparently after all those years it is still working at 90% efficiency. Wish I was that good at 40.

The thought of an outsider entering the house sent son into an anxiety meltdown. Unplanned visitors is not easy at the best of times for someone with Aspergers. But during a pandemic…..

To try and keep a lid on his anxiety we agreed a decontamination protocol. Thankfully this was carried out to the letter.

  • The service person wore masks and gloves,
  • He only entered the house via the back door,
  • He only ventured into one room,
  • After he finished I quickly disinfected the room and the door he used,
  • That room and that side of the house was then closed off for 3 days,
  • As was the path which the serviceman walked across,
  • I than had a shower and completely changed clothes.

It might seem OTT but to our son this was the bare minimum which was acceptable to him. His way of protecting his safe place. He will be much less stressed out when that part of the house comes out of lockdown. Later we had a chat about all things pandemic and his anxieties. Clearly we won’t be dropping our local procedures for a considerable time. Putting aside the merits of homeschooling debate, I just can’t see how he cope function in a public environment any time soon. Certainly not in a crowded school at the start of September. Thankfully the concerts we were due to see have been cancelled. (The Who, Whitesnake, Foreigner, Europe, Aerosmith, Hollywood Vampires). We are down to just two in October now. Deep Purple and Ozzy. But I just can’t see them happening as well.

So maybe we start to adopt a mindset that actually our enforced house and garden lockdown will last into 2021. Will need to think about that. What additional things do we have to put in place to ensure that we both can continue to enjoy life for all those months. Maybe that industrial sized ice cream and slush puppy machine is not such a far fetched idea……

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.