Hill

This is at the maximum zoom on my old digital camera. Probably takes about 30 minutes to drive here. It’s called Garrowby Hill. It is the highest point of the Yorkshire Wolds and is just over 800ft above sea level. It’s supposed to be a lovely view from the top but in all the years we have never stopped here. Surprising given the number of times we have driven past it.

We are now moving close to THOSE six weeks. Starts on my birthday, the day my mum left us and then 6 weeks later ends when my partner left this world. That was some 6 weeks in 2016. But it’s a bittersweet time as those 6 weeks usually make the start and end of the school summer holidays as well. A time when son is free of the trials of education. A chance to be free and a kid again.

Well let’s concentrate on the free and kid bit. That’s this years plan anyway. Yes recall good memories but try to remember it’s 2020. Not 2016. I guess a bit like Garrowby Hill. We can see it but it doesn’t mean we have to go and stop there. So yes 2016 will always be there but we don’t have to stop there.

Penny drops

I tried to get an appointment to see my doctor for the first time since the pandemic hit. That was an experience….

  • First listen to the 3 minute recorded message about the pandemic,
  • Then listen to another recorded message about the importance of wearing masks,
  • Now listen to a message about the doctors and nurses avoiding making unnecessary face to face contact with patients,
  • Then join the queue for a receptionist,
  • Finally a real person. Need to describe any symptoms and the reason for calling. I can have a telephone appointment for later in the day,
  • Doctor calls and basically says that it is currently unsafe to bring patients in for appointments. Much safer to stay at home and avoid crowds. A few questions and then it’s a quick medical opinion. Time for stress busting, relax, have a break and hopefully things will sort themselves out. Probably been trying to burn the candle at both ends since 2016.

Having a break is not happening so it’s stress busting time.

  • Eating healthily – well I will try……
  • Mediation – I really must get my head round this, more free apps downloaded…..
  • Mindfulness – I thought that was mediation, free apps downloaded……
  • Yoga – the mind is willing the body is less inclined to bend…..
  • Plenty of sleep – I’m trying, been trying for ages……
  • Go hill walking – not going to happen this side of Christmas, tempted to add 2022……
  • Calming and relaxing music – I guess that rules out metal then…..
  • Make time for friends and doing fun stuff with them – I certainly will……
  • Find more time for reading – it would be great if I could……
  • Herbal teas – ok I can do this one……

In a nut shell I will try to improve things but need to recognise the current life limits. Maybe the secret is to be grateful for the life I have and to smile. Yes smiling more is a good start.

Sometimes the penny drops….

Poppy

A beautiful gift. The name Poppy has always been special for us. My mum had a sister called Poppy who died as an infant. Always think of mum and her young sister when I hear the name.

That’s the first time a Poppy has grown there. Hopefully many more to come.

In a few weeks it will be 4 years since my partner left this world. A lot has happened in that time. The world has changed, I’ve changed and son has grown – rapidly. It definitely feels like I’m living in a new life cycle now. I’ve stopped trying to reinvent old memories. Started living today. If you don’t do that then life questions

Why,

What if I did that,

Why didn’t I do that.

Trying to fathom answers to those questions is really just playing guessing games. Won’t change what’s happened. It’s not going to help our son and it’s not going to help me.

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.

Timing

I drafted this just a few minutes before Wednesday deteriorated so rapidly. I guess it’s kinda apt now.

Sometimes your just in the right place at the right time. 20 seconds later and I would have missed the winged visitor.

It was the case with my partner. I was in the right place at the right time. She gave me the most wonderful times. Now I carry on with our Son. Trying to burn as brightly as she did. Hopefully making a few people smile along the way. That’s my excuse for the terrible jokes.

The timing of that winged visitor got me thinking. Yes I know that’s dangerous. 20 seconds later and I would have missed it. So if I had not answered that annoying telemarketing phone call then I would probably have never seen the winged visitor. So something annoying led to something quite wonderful. We (I) often forget that. It’s easy to think that ‘Bad stuff leads to more bad stuff’. Well it doesn’t always. Sometimes the bad stuff presents new opportunities.

Looking back I very nearly never took the job that led directly to me meeting my partner. I was due to take a better paid position somewhere else. At the last minute the organisation I was due to move to changed management structure. My job offer was rescinded. Next day I applied for the job that would change my life. A bad thing leading to something beautiful.

Now I’m not going to argue that the loss of my partner led to something beautiful. It was truly awful and will remain that way. But it certainly did change me into a better person and a much more complete parent. It forced me to ditch a career and opened up more quality time with our son. I certainly live a simpler more sustainable lifestyle now. I find it much easier these days to be thankful. So yes a truly awful event did lead to positive life changes.

I guess it’s all about accepting that bad stuff happens and not assuming that bad necessarily follows bad.

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….

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.