1000 odd days

This is a photo from 3 years ago. I stumbled across it while looking for some old climbing ones. Another typical Yorkshire August day – all four seasons in one day. It got me thinking – what’s the same and what’s changed in those 1000 odd days. See that’s what a professional accountancy qualification can do for you – I’m good at those complicated adding up calculations.

THINGS WHICH ARE THE SAME

  • Getting no dyslexia support from school,
  • Getting no Aspergers support or accommodations from school,
  • Still bereaved,
  • Still a single parent,
  • Still a metal head at heart,
  • Hawklad is still a lovely character,
  • No holidays, no Switzerland,
  • Pets causing chaos,
  • My football team is still useless,
  • Still see myself as European,
  • Brexit is still a shambles and a monumental exercise of self destruction,
  • Vegetarianism,
  • Can’t cook,
  • Still exercising,
  • Still 5ft 10 and a half (don’t forget the half – it takes me beyond average height),
  • Still not climbing,
  • Still can’t work out the TV remote control,
  • The garden is still a mess,
  • Still don’t like U2,
  • Still haven’t seen Avatar without falling asleep,
  • Haven’t seen my brother even though we live only 50 miles apart,
  • The garden gate still needs fixing,
  • The washing machine is still possessed,
  • Still having bought myself that ginormous telescope,
  • The blog is still going,
  • Still writing about the same stuff,
  • Still waiting for official recognition of my stellar poetry skills,
  • Still haven’t won the lottery,
  • Still losing my car keys.

THINGS THAT HAVE CHANGED FOR THE WORSE

  • As Hawklad has reached the teenage stage many of the health support packages have been removed,
  • The waiting list to see The Paediatrician is now approaching 2 years,
  • A pesky pandemic,
  • Hawklads anxiety levels,
  • Hawklads isolation from the world and other kids his age,
  • Due to circumstances had to stop running,
  • Boris,
  • Trumps antics,
  • Might be a metal head but the days of skin tight jeans have gone,
  • Lost a couple of much loved pets,
  • Don’t really see my sisters anymore,
  • School’s view of Hawklad – definitely revising his perceived ability levels downwards,
  • The number of times I have to shout or pull my hair out at school is rising,
  • I’m physically meeting less people,
  • The list of things on the need sorting out when funds are available is growing.

THINGS THAT HAVE CHANGED FOR THE BETTER

  • Hawklad understands himself and his Aspergers much better now,
  • Hawklad is overcoming his dyslexia,
  • I understand now that it’s just as ok to Laugh as it is to Cry, YES it’s ok to live,
  • Friendship
  • Close Friendships,
  • Faith,
  • Love,
  • Happiness,
  • One step closer to home schooling (hopefully),
  • My dress sense – I finally chucked out some of my pink climbing shirts.

You might be thinking that looking at the relative number of entries on these lists that the last 1000 odd days have been generally bad. But look at some of those things on the last list. It’s not about quantity it’s about quality. Yep looking at that last list, over the last 1000 odd days we have challenges but some really good stuff has still happened. That’s why there is always hope.

A story to tell – one

We all have a story to tell. All stories are just as valid and important as the next one. Sadly many stories are not told. Well actually that’s incorrect. Sadly many stories are not heard. They are replaced by stereotypes. Too many jumping to conclusions. A view that fits better into the needs of so called modern society.

This week again stories of single parents coming from The Government and it’s Friends. Scrounging off society. Shying away from work. A life of luxury…. That fits in with the message. BUT Cut to a supermarket. A parent is struggling to control a child. Those knowing looks and tuts from other shoppers. They have no idea of the back story. Just how tired that parent is. Trying to figure out a way to feed the family with so little money. Trying to cope with zero help. Being crushed by anxiety and living no life at all. Crushed by circumstances. It’s often easier for some people to cast the first stone rather than offer a hand of support.

The story of kids with Autism and Aspergers again often not heard. Drowned out by stereotypes and unfounded assumptions. Each and every child is different, unique. Each child has their own back story. But so often we here – uncaring, cold, demonic, unfeeling, lacking empathy, no sense of humour, unable to love, a burden on society, low attainment, not really like a kid should be.

Wrong, wrong , wrong. Every child is unique. That’s the point of this blog. Others bloggers do it far better than my drivel. But we try to show the real story of our kids. Hawklad has Aspergers yet he can be funny, caring, have empathy, play games, understand others, be funny, have talents, be lovely, have dreams they want to achieve, have a sense of humour and love. All kids deserve a chance. Deserve a childhood. All kids.

Everyone has a unique story. Maybe as a society we need to start listening.

Mmmmmmm

“Dad its about time you had a forfeit.”

****Hawklad knows me far too well. If you fancy beating someone at a challenge then I’m your man****

That’s assuming Son that you can beat your Dad.

That’s a given Dad”

Ok I’m on a losing streak which is running well over 7 years. But maybe today is MY day. So what am I going to beat you at. FIFA, Kerplunk, Top Trumps, Table Football. Maybe even a race – remember your recovering from an operation (**** what an awful parent that makes me sound like ****).

No Dad let’s do something completely different. Let’s pick a word and if I can get you to say it this afternoon – then I win.”

I’ve got this. What’s the word going to be? How about Supercalifragilisticexpialidocious (****didn’t sound anything like that in my several attempts to say it*****).

No, how about we make it interesting and make it something like Mmmmmmm”

Ok that’s a deal.

*************

Dad where did we see Hollywood Vampires play?”

That was Manchester.

Ha that was easy Mmmmmmanchester.”

I’m not having that Hawklad. Doesn’t count.

**************

Dad which band did Ace of Spades?”

That’s Motörhead.

Got you. Mmmmmmotorhead.”

No no no, not having that.

**************

Dad what is the best comic book movie Universe?”

Definitely Marvel

So easy, Mmmmmmmarvel”

No no no no no. Just No Hawklad.

***************

But finally I cracked. The Force is not strong with this Jedi Knight.

Dad I’m starving, do you fancy a Chinese takeout?”

Mmmmmmmmm Mushroom Foo Yung. Mmmmmmmmmm Beancurd in Black Bean Sauce.

Got you properly that time Dad.”

Pants…. So I take it that you don’t want a takeaway meal then.

Of course not Dad.

Ok Hawklad, what’s my forfeit then?

Dad Tomorrow I’m going to make you a special drink in the kitchen. Let’s see what interesting ingredients I can find. Bet you won’t be saying Mmmmmmmm after you drink that.”

No I kinda figured that. Unless it’s ‘Phone me a Mmmmmmedic”

The Irony

The old Apple Tree. Definitely enjoying the sun and the rare windless conditions. A good day for a garden meeting.

Well today didn’t go as planned.

Son was primed for his garden meet-up with his new nurse counsellor. These things don’t come easy to him. Often it’s about trying to build a bond. A bridge. Only when that link is formed can any meaningful work be commenced. He had that link with his last person, we can only hope a similar one is formed again.

So yes he was as ready as he could be. The garden was setup…..

Then the call from Nurse Reception. Unfortunately the counsellor had taken ill in the car and had turned back. Headed home. Really sorry and they will rebook the session when the counsellor is back at work.

So hope that she is alright. These things happen. But the irony.

A session to work on Hawklads Health and Pandemic related fears cancelled due to illness.

The irony has not been lost on him. Oh sorry forget, HES not supposed to get things like irony….. A Doctor once said that to him during a consultation. Hawklad fixed him with a Paddington Bear Stare and said “Are you a proper Doctor?”. The Doctor looking a bit flustered and talked about his qualifications. Hawklad them calmly said “ok a Doctor but clearly not a very good one…..”.

So we just have to wait for another appointment. Absolutely no idea when that will be. Probably after schools go back in September? That’s another potential return complication. It’s certainly added a little to his fears, now. When the meeting does happen I’m betting on Hawklad asking for the garden chairs to be further spaced apart. Thats something which won’t happen at school.

We dust ourselves off and we just have to go again. The cancellation may be for the best. Stops anything unpleasant coming into our safe area. Plus it forces me to do something rather than rely on others. Just got to up my game.

Yes another odd Monday.

Visit

By the time you read this then hopefully Hawklad with have had a garden visit from his new nurse counsellor. We got a late go ahead with lots of safety caveats. Hopefully it’s a start.

Things are not easy for him. The hand washing is escalating. He now doesn’t feel able to touch taps or surfaces. Before he uses anything like an iPad then these have to be disinfected. All bedding including pillows have to be washed on a daily basis. Currently ok in the hot weather, dread to think what it will be like trying to dry pillows in wet weather. Clothes have to be changed several times a day. And this is just living in his home and garden bubble. A very small bubble. He hasn’t physically met up with another person his age since March. Actually I’ve not met up with anyone my age in months – it’s difficult since I predate the Dinosaurs…..

But there is always hope.

We have potential access to counselling. The weather is currently grand. We have a freezer filled with ice cream and slush puppy flavoured ice pops. We have a lovely (if slightly overgrown) garden. Hawklad has his pets. I have friendships. Birds of Prey fly close to the house. Disney Plus is ace. It’s the summer football break so my team can’t get beat. We live in Yorkshire. Nobody can see me make a fool of myself doing yoga.

So yes there is always hope.

Nonstop

It’s a hard life on the pet sofa. Nonstop action.

So while the pets were unusually becalmed and Hawklad was watching a Sherlock Holmes movie, I could focus on a pressing matter. Seeing what bargains I could find on the internet. Replacements for items which are starting to fall to bits. Actually that could include me.

As usual the items on my list where either unavailable or at full price (or beyond). But I did come across a range on interesting bargains.

  • A rather battered old pink Campervan. The description referred to well looked after, well loved, filled with character. I didn’t references to words like knackered, dented, rusted or broken. Clearly if it was true that the badly battered vehicle had in fact had only one careful owner well that owner must have been NASA.
  • A collection of novelty LPs which included masterpieces from the likes of The Crankies, Baron Knights, Showaddywaddy, Mud and Vanilla Ice. Shame I don’t have a record player……
  • A chessboard with some of the pieces missing. Suppose that contributes to quicker games.
  • The entire James Bond DVD collection. One dvd is missing and several are scratched. They also won’t work in the UK and Europe. But apart from that….
  • A Bullworker. Remember those. Those exercise devices which apparently if you used it for 10 minutes a day for a month you would end up looking like Thor or The Terminator. I might need to use that for several years……
  • A Batman lego set which would cost more than my car….
  • A Genuine Boomerang. Wow you must be able to get fake ones.
  • A box of VHS tapes. Maybe I can sell the bag loads of those cassettes we have filling up the garage.
  • A set of glowing hula hoops. Surely that would represent an essential purchase.
  • A Boris Johnson punch bag. So so tempted.
  • A giant bag of jigsaw pieces, several sets mixed together – no guarantee that all sets are complete. Trying to get my head round that one.
  • A pantomime horse costume for two adults. Apparently with some wear and tear. The mind boggles.
  • A set of 30 Xbox games. Ranging from motor racing to Star Wars.

Most admit the Xbox games pack was tempting. One problem. We would never use them. Son is a creature of habit. On his Xbox 360 he only ever played two games FIFA (football) and WWE (wrestling). When I saved up to upgrade it to an Xbox One, guess what. He’s only ever played two games on it. FIFA and WWE. Maybe Microsoft can next time just do us a special cutdown version of the Xbox Two. We only need it to play two games. Surely they can do us a cheap version rare edition. That might be worth something on eBay.

August

Heralding a wonderful summers day – NOT

It’s been one of those wonderful Yorkshire Summer Days. Damp, exceedingly windy and cold. The cold that makes your toes curl. August and we have the heating full on. Not a day for cold drinks. It’s been steaming hot tea and decaf coffee. Hawklad has been on hot milk – on repeat. That’s a great way to get some calories into him.

August also sees the ongoing trials associated with my WordPress experiment. That pesky new editor. I am trying, really trying. I hear you shout – Your just so vexing. But I am trying to like the editor. But really should it be this hard. It crashes, it messes up formats, drops links. When you do get round to publishing then posts suddenly disappear or mess up. Comments go missing. And on and on. Even this grumpy Yorkshire man is easier to like than this so called editor.

But I will keep trying to get my head round it. Just like trying to get my head round this summer. Just like I’m trying to get my head round Hawklads food intake. He’s not had his weight officially tracked and assessed by the health professionals in over 2 years now. With the current service restrictions, it’s going to be well into 2021 before that happens. On the last assessment he was right on the edge of being ‘too underweight’ for his height. I think that he’s probably dropped below that now. So following the Paediatricians instructions I’m trying to get as many calories into him as possible. That’s not easy. He has such a limited range of foods he will eat. Over the years I have slowly managed to increase these so that he has 6 different main meals which he has over the week. It’s the same meals, weak in weak out. Not much scope to vary things there. Trying to get him to eat the occasional chocolate bar or bag of crisps helps. So does milk. So a cold day and repeated hot milks is a welcome bonus.

Yes a cold summer is good sometimes.

Online Education

Red sky – delight or warning?

For a couple of weeks I had been thinking about doing a list of things which might help make homeschooling work. But then Robyn published her wonderful post about Successful Online Learning. Robyn said it way better than I could ever do, so I thought let’s forget about my post. But then the inner muppet took over. How about tips on making a complete dogs dinner of Online Learning. I can do that. So here goes a Muppet Guide to Homeschooling.

  • Don’t bother checking the unused school bags which have been sat next to the front door since March. There is absolutely no chance that half eaten sandwiches and bananas might be still squashed in there. Even less chance that damp PE kit might still be festering under the mouldy school lunch.
  • Make sure you buy new and expensive school uniform items a week before schools shutdown for a pandemic. Absolutely no possibility that your kid will shoot up several sizes in those few months.
  • When the PE teacher asks for the parent to also take part in home games lessons, you have only one sensible response. Absolutely, it will be fun to show off to your child that you are still a sporting Super Being. There is no conceivable risk that you will pull every single muscle in your body and that you will be completely humiliated by your beloved offspring.
  • The Xbox is a perfectly acceptable online educational tool.
  • When you hear the words SCIENCE LESSON and MOLECULAR STRUCTURES in the same sentence then immediately pretend to be on a works call for the next two hours. The same principle also applies to the words MATHEMATICS and CALCULUS.
  • On a similar theme the words RELATIONSHIP And SEX EDUCATION should immediately bring the response – “go and speak to the other parent”. If that is not practical then it is perfectly acceptable to run outside and spend the next hour cutting the grass in the pouring rain.
  • Letting your child watch wrestling videos during a Citizenship Lesson is perfectly in line with governments curriculum.
  • It is perfectly acceptable to attach a profanity to any reference to DRAMA lessons.
  • A can of Pepsi, bag of crisps and a chocolate bar represents a balanced school lunch.
  • When homeschooling first starts you have this real commitment to fully focus on your child’s education. To sit with them. To be that one on one teacher. That feeling lasts for at most a couple of hours. You start to waiver with frequent trips to the kitchen for a hot drink and a biscuit. Next you sit next your child but secretly try to look at your emails and news feeds. It finally breaks down as your openly start playing Crossy Roads.
  • You don’t need to worry about charging the school iPad up. Your diligent child will always do that…..
  • It doesn’t make you a bad parent when you tell your child to ignore the instructions of the French Teacher and to use the Google Translation App.
  • Never get drawn into debates on History. You have zero chance of winning those – you haven’t read a history text in decades and watching the Ozzy Osbournes history tv show does not count as an Academic Qualification. Best approach is to just smile and nod.
  • For absolutely any Geography question your only responses should be – ‘The Himalayas’, ‘The Nile’, ‘Coastal Erosion’ or ‘Go and watch the Discovery Channel’.
  • When you restock on pens from Amazon never buy the cheap multipacks. You will never use the Red and Green ones.
  • For Food Technology it is perfectly acceptable to let your child watch any Gordon Ramsey Show.
  • Try to avoid saying things like ‘In my day’, ‘That’s not what I was taught’, ‘The Dinosaurs were not extinct yet when I was in school’. These all may give the false appearance that you are in fact an old fossil.
  • When your child has to do an art project never say ‘what is it supposed to be’ when you see the completed work for the first time. That’s not cool parenting at all. Much better to say ‘that’s nice’ or ‘that’s better than an Andy Warhol masterpiece’.
  • You might think you are an expert in computing. This might be backed up with academic qualifications. But never ever get involved in anything to do with technology. Trust me, let your child deal with the computer stuff. In fact let your child sort out your mobile at the same time.

There you go. Don’t follow any of my tips and you might make homeschooling work for you. Even better go and read a post like Robyn’s, she knows what she’s talking about….

Remember homeschooling can be FUN.

Reality

Late last night I was watching the news channel and a government expert was being interviewed about people struggling to leave the house since lockdown was eased. We will ignore the fact that the easing has been halted and areas are starting to fall back under emergency regulations. The experts take was that it was perfectly safe for everyone to go about their normal business. People should get out, go to the park or better to a restaurant. Those struggling should be brave and get out. Those still struggling to get out should arrange to see a health professional. This Government had put in support to facilitate this.

Ok…..

We’ve been lucky. We might get to see a nurse this month but we’ve had to fight tooth and nail for that. Because of cutbacks son has not been seen by a Paediatrician in well over 2 years now… 6 of his 7 support services have been removed. But again we are lucky. Far too many don’t get any support at all.

It’s 3am and I heard our son call. He had gone to the bathroom and because he had gone barefoot he desperately needed to wash his feet. So just before the morning bird chorus started I was running the bath so he could ease his anxieties. He is currently not able to touch taps. Towels can only be used once before they are washed. His bedding has to be washed daily. He has to wash his hands every few minutes. He can’t even touch is own shoes and clothes with his hands. Tell me how he is supposed to be brave and just get outside. The government just has not got the slightest idea of the problems facing so many in our communities. The health professionals just don’t have the resources to cope. It’s taken a pandemic to expose the true folly of focusing cutbacks on mental health and support services. When will our leaders wake up to the reality of life for so many households in our countries.

Groundhog Day

One of Hawklads favourite movies is Groundhog Day. Must admit a I’ve always liked that film. I’m showing my 1000 year plus age now by saying FILM. Anyway I liked that Bill Murray film because it was funny and a bit about redemption. Repeatedly through life I’ve had that Groundhog Day feeling. It’s so hard to put down on paper. That feeling that on this long journey, the circumstances and challenges remain unchanged. Never ending. What ever I do, they just seem to repeat. Slowly it’s starts to eat away at my inner self. Plays havoc with my emotions. My inner belief ebbs away. That’s when it feels like I need another caring hand to lead me into a new tomorrow. So yes I get this movie.

Hopefully I’m not as bad as Phil was at the start of the film – sorry movie. But again it is starting to feel like days are starting to repeat themselves. Even when I try to introduce something new, try just that little harder, then the next day starts very like the previous day. Stuff just keeps repeating itself.

  • A largely sleepless night,
  • Get up and do the same exercises in the garden,
  • Try to get the dog to go outside for his charge around and do his morning constitutional,
  • Check the news – these days it’s always the same headline and the same frustrations,
  • Sticking to the same fasting diet regime,
  • Cooking the same meals for Hawklad (he has the same 7 day food menu which he sticks to),
  • Sort out the mess the pets have made,
  • Hoover and clean the same rooms (we only have 5 small ones, a bathroom and a kitchen to worry about),
  • Try to get the old washing machine door to lock so I can do a wash,
  • Have the same thoughts about been able to run free beyond our garden fence enclosures, *** don’t get me wrong I am so thankful for the garden, so many wonderful people don’t have that***
  • Look at the same walls, with the same pictures, often feeling like they are closing in on me,
  • Spend far too long moaning about the weather,
  • Check the work system and email the same people, saying basically the same thing,
  • Wash up the same plates and cups,
  • Make a list of today’s challenges and they are the same as yesterday’s, the week before, last months…..
  • Jump on the scales and whisper PANTS,
  • Want to eat healthily but having to rely on Soya (Soy). Then watching my body just basically say NO,
  • Try to find my keys which are missing again,
  • Walk 40 yards to the post box to post a letter – my big trip out of the day,
  • Start the car up to make sure the battery doesn’t go flat,
  • The things that brought pain and doubt yesterday are still here today,
  • Check the bank account and whisper BIG PANTS,
  • Talk to Hawklad about hand washing every time he goes to the bathroom – which is about every 10 minutes,
  • Wash my hands constantly to help ease Hawklad’s fears,
  • Unblock the toilet and kitchen sink once a day, the builder who installed those was clearly having a laugh –
  • Reset the WiFi at about the same time every day as it’s gone down with cabin fever,
  • Try to get the cat to eat it’s gluten, grain, dairy free food when clearly it just wants to eat all the stuff that gives it diarrhoea,
  • Bake and Fail – that’s a great book title…..
  • Field the same calls, from the same companies offering the same services I don’t want,
  • If and when it rains, try to stop a flood next to the back door. Basically ends up mopping out the pools of water,
  • Paying bills,
  • Trying to chase moths and insects out of the house – the price you pay for living next to a farm,
  • Fight the same fears and demons,
  • Face the same self questioning,
  • Once a week cut the lawn with a lawnmower which basically hates cutting grass,
  • Every second Thursday realise the garden bin is still basically empty so have a mad gardening rush,
  • My dreams are still just dreams, seemingly no nearer becoming reality,
  • Go to bed so hoping for sleep, yet…..

Now don’t get me wrong some of the routine is just so fantastic. I just wouldn’t dream of changing those things. Going out in the garden at about the same time every day and talking with Hawklad. Spending time with him. Thinking of friends. Finding ways to make connections with those who are special to me. Looking at beautiful photos and videos – and smiling. Having fun playing games. Doing a bit of writing or waffling depending on your viewpoint. Saturday night movie night.

So yes it does feel like Groundhog Day. This time it may well keep feeling this way until our personal lockdown has been partially lifted. Maybe this time it’s could be labelled as Cabin Fever. Whatever it is, just like Phil in the movie, it often feels like I am the only one stuck in this repeat cycle. AND let’s not forget a really important factor – some people long for that repetitiveness. Hawklad is one. So maybe Groundhog Day can also be a good thing. Just got to go with the flow, make each day count as best I can and worry about tomorrow if it ever arrives.