Open your eyes

Looking through a few flower photos and guess what I found. Another appearance from our friendly garden visitor. This unexpected find brought a much needed smile.

The unexpected hospital visit was tough. It was physically and mentally tough for our son. Hospitals are not pleasant places at the best of times but during a pandemic. Just awful.

It was a routine procedure but it made me face some demons. Waiting for news in the building where my mother died and where I found out my partner would be dead within days. Too many traumatic memories flooded back. Sat by myself in a waiting room. Yes it’s ok to cry.

Those memories and the clear unpredictability of the future made me realise what is so important to me. The things I need to cherish and make the most of. No more trying to email when talking to our son. It’s such a bad habit, you miss out on so much and son can see the lack of focus. Quality time MEANS quality time. It took something so unpleasant to clear my mind and refocus my priorities. Your never to old to open your eyes.

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.

Bit battered

Poor thing has been a bit battered in the recent bad weather. Well I still think it deserves a moment to shine.

I was having a chat with our son last night about how life has changed recently. It’s only really now that some of the implications are starting to feed through. I will only focus on one small part of the conversation as this post could have ended up as long as the extended Directors Cut version of War and Peace.

Son struggles with social settings. It’s a well established element of Aspergers. He will actively pull away from crowds and groups. One of the only exceptions to that has been Rock Concerts. He still feels uncomfortable there but for a variety of reasons he can cope. He can put his hood over his head and no one will notice. He likes the fact that rock crowds seem very welcoming of any person, any look, any characteristic. With the noise no one is likely to talk to him. When the lights go out, no one can see him. You are just one hidden person in a sea of people. Plus he really loves the music.

So far he has seen Iron Maiden, Hollywood Vampires (with Johnny Depp), Alice Cooper, Kiss, Lynyrd Skynyrd, Thunder, Shinedown, Status Quo, The Darkness, The Damned, The Stranglers and Status Quo. He’s also seen his favourite band – Alter Bridge.

Before the pandemic kicked in he was hoping to see more. The likes of Whitesnake, Foreigner, Europe, Ozzy, Aerosmith and The Who. But the pandemic changed the world. Most of these have been postponed or cancelled.

When concerts restart what will they look like. Will the days of standing shoulder to shoulder return. Will people have to wear masks. What number of fans will be allowed in. How close will you be able to get to the band. Will you need to be vaccinated before you attend. Will certain fans be excluded (age, health factors). Will all the fans want to return. Will it just be open air concerts. Will it be the new idea of drive in concerts. Will some bands just give up. Who knows.

The pandemic also changed son’s life. It has sent his social and health fears into overdrive. Changed the balance and how he sees the world. Things which were acceptable have been tipped into the no go area. Those changes might be temporary or they could be permanent. Only time will tell. But certainly his concert days are at best on long term hold. That’s the thing about Aspergers, changes in external factors can have a huge internal impact. Lasting impacts.

Regardless of any more virus related developments, I just can’t see son wanting to go to a concert this year, probably next as well. Maybe that fragile corridor that allowed him to venture into a concert crowd has been broken on a much more permanent basis. We just have to wait and see. Maybe going forward our own music festivals are the way forward. Buy a concert dvd and hold the event in our living room or garden. We can still put the T-shirts on, have the snacks, drinks and a burger. We can even turn the lights out and crank up the speakers. Best thing – no masks required. No queues for toilets as well….

That doesn’t help the concert industry. I just hope they and the bands find a way through this mess.

So maybe that’s no concerts for Dad as well for sometime. But it is what it is. I’ve been so lucky to see so much music over the years. So as I move into a barren concert period let’s pause and see what my memory is like. Lets see how many of the artists I have seen over the years, I can actually remember. The good, the bad and the ugly. I’ve set myself 10 minutes (so I might miss a few). Here goes….

Whitesnake x4, Motörhead, Deep Purple x3, Black Sabbath, Ozzy, Dio, Rory Gallagher, Tin Machine (David Bowie), Scorpions, UFO, Meatloaf x3, Blackfoot, Mountain, Alaska, Saxon, Magnum, The Firm, Eric Clapton, Tom Jones, Ronan Keating (x2) my partner to blame for that…. Blue Oyster Cult, Alice Cooper x3, Gary Moore, Deacon Blue, The Kinks, Kirsty MacColl, Pink Floyd, Nils Lofgren, Killswitch Engage, Birdland, Bernie Torme, Roy Harper, Suzy Quatro, Paul Rodgers, Chris Rea, Marillion, Runrig, Asia, Al Stewart, Neil Young, Peter Gabriel, Tracy Chapman, Terence Trent D’arby, Simple Minds, Lou Reed, Bonnie Riatt, Chrissie Hynde, Jackson Brown, Little Steven, Bryan Adams, Squeeze, Tina Turner, Extreme, Was Not Was, Lyle Lovett, plus those with son.

Ten minutes up….

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……

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.

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.