Another odd day

Another odd Yorkshire day. Mixture of sunshine and then chucking in it down. Warmish then freezing. Still and then gales. But it wasn’t just the weather that was odd.

This morning started with a broken works computer system. Won’t be fixed until this – Saturday so that’s several late nighters then to catch up. Didn’t really want any sleep this weekend.

Next came a heated exchange with school. Due to a school admin error son never got his Year 8 injection. Not an issue as the school nurse will be returning next year BUT just a picking minute. If parents or kids make one mistake it’s an automatic negative yet no sanctions on school when they mess up. Apparently in schools case it’s just one of those things as mistakes can happen. Have you had one of those calls where you can feel the blood go from boiling to nuclear. One of those calls where you are increasingly squeezing the life out of the telephone. This was certainly one of these.

The call rapidly moved onto the lack of support for our son and the refusal of school to move him (at least in a couple of subjects) to a higher set. Last school year his Form Tutor told us that he was performing so well even without support from school. She was one of the few teachers who seemed to understand dyslexia and autism. As his marks were in the top 2 of the class then he should be moved up in at least 4 subjects. Unfortunately she left in the summer. On the call school said the Form Tutor was incorrect and it is not just marks that determine academic performance. Now apparently he is viewed as being in the lower middle of his class with many children ahead of him. In effect he is a low performer and any moves up in set are out of the question. The call ended (to the phone handset great relief) with a terse Dad demanding another meeting with school and the council. Not that it will do any good.

Needing to cool the raging core meltdown within I went for a run. A couple miles into the run a hot air ballon appeared over the trees. A quick photo and off I set again. Head down.

Running through the woods I started to hear voices. But nobody was insight on the path. Oh no it’s those Viking Ghosts. Then a roar of a burner above. Now the balloon was directly above and just above the tree line. I’m being buzzed by a mad balloon pilot.

Then a shout and they started waving at me. You wouldn’t be waving if I had a pellet gun with me.

Then it slowly started to rise and off it went.

Just before school finished I had a dreaded dental appointment. Might as well buy a yacht in Monte Carlo – unbelievably expensive. I ended up being told off for trying to be healthy. I have always had lemon water when I am training. Even more since I’ve stopped drinking coffee. The Dentist was not impressed. Apparently lemon (even watered down) is really bad for the enamel. Good job I didn’t mention the super strength lemon drink I have when I wake up. So now I am supposed to switch to Cucumber Water or Thyme Water. Cucumber Water taste like the liquid you drink as the last resort if your stuck in the desert. I’m only guessing that as NO I have not drunk my own …….

One last odd twist. Son came back from school with a letter. The letter was issued to son before my heated argument with school. In a few weeks the school is having an awards night. And son is getting an award for the number of merit awards he got last school year. This is fantastic. BUT. Not sure how this tallies with the schools current assessment of him.

Definitely an odd day.

Commitment

This photo is from a couple of days ago. It was reasonable weather.

Over the last couple of days the weather here has been a little more damp. The Photograph below from The Guardian sums up today’s dampness. Welcome to Yorkshire – the worlds best cyclist competing at the UCI World Championships and enjoying the welcoming Yorkie weather. As my Dad would have said that will put hair on their chests. Bet the poor riders didn’t expect to be riding through lakes. Amazingly the race was completed. Thats commitment for you.

Parenting is about commitment. Even I realised that before our son was born. The bizarre assumption we made was that at some stage the kid(s) would fly the nest and we would go back to something like our old life’s. Maybe after school, after college, after university, maybe a bit later. But at some stage it was happening. At some stage parenting becomes more part time and the stuff we had to park can be resurrected. In my case socialising with friends, climbing, playing sport, career, astronomy….

“WE” would get our life’s back – yes I never envisaged one tragedy…..

But maybe the full time parenting commitment may last longer. I remember our sons lead health professional telling us

It is possible that your son will be largely independent at some stage. However on the current evidence this might be the least likely outcome. You need to prepare yourselves that he may find it very difficult to live independently at any stage.”

As a family we are so fortunate. Son is making great progress in many areas. So many families don’t get this level of progress. But there are clear areas where progress is not being made. We have to be realistic that progress may never be made. Support may be needed life long. That’s a sobering thought and raises so many knock on considerations.

Those parts of my life I assumed would restart at some stage may in fact not happen. I don’t like admitting it but this thought makes me sad. But that’s life. I now realise bad things happen and you have to deal with them. You never know son might one day take up something like climbing. I suspect not in the case of climbing. He is a natural risk assessor. He might make sufficient progress to become fully independent. We just have to see what happens.

I know I’m not the only one who is in this position. I was reading a similar thing from a blogger I really respect just the other day. Parenting sometimes doesn’t work out the way you have imagined. Parts of your world are lost. Dreams become unattainable. Although parenting is the best gig in the world it is so hard to explain to others how part of you can still feels so sad.

I now know that this is parenting. Its about sacrifices. It’s about commitment.

Burns

It’s hot. That’s Yorkshire hot. Which probably means mild in other parts of the world. My Dad would have called it mafting. It’s that mafting that even the Yorkshire Farm Machinery can’t cope. The photo shows the smouldering wreck of an unfortunate tractor with a badly burnt field. That’s a first on the dog walk.

Our Son does suffer from stress and overpowering fears. When he took one look at the burnt carnage he immediately panicked that our house would soon be engulfed in flames. It’s understandable as the field is less than a mile from us. I tried to calm his fears with words but with no luck. So actions are required. A mad Dad sat down in the blackened field. Look son my bum is getting a little warm but my shorts are not ablaze. Although it did demonstrate a point I should have thought the plan through a bit. Light grey shorts are maybe not that fetching when they have two buttock shaped black marks on the rear.

Although our son’s wild fire fear has been dampened down a little. Sometimes silliness works better than rational argument. It is still there and will be until normal Yorkshire weather returns.

When you have a child who suffers from these inhibiting fears it is vital that you try and keep on top of them. Working in partnership with school and health services is vital. At his last school they were usually on the ball. The teacher would catch me at the end of day or send a quick email to let me know if something had happened. If it was particularly significant school would phone immediately.

Unfortunately at his new school this has completely stopped. I fully understand that it’s a much bigger school and he has different teachers for each subject. But surely they still have a duty of care. I know speaking with the health professionals they say unfortunately most schools in they area are the same now. The close partnership working which was in place a few years ago has dried up. Again and again it comes back to the same reason. Government. As one Doctor said

Under the last Labour Government it was about the patient. Now the patient is a secondary consideration to income generation, competition and profit. Money is now king.

So increasingly it’s just left to parents, families and friends. The days of government for the greater good are over. Its all about self help and what the individual can afford. Must deliver tax cuts. It’s back to Victorian ethics. Days when democracy could be overridden by the powerful and the rich. A time when it was ok to send poor kids up chimneys. When hatred and discrimination was the norm.

Maybe it’s just me and I’m in the minority. Just my irrational fear. But increasingly my country is becoming alien to me. I hate what is becoming. Too many kids do not get the support they badly need. As a generation we have really messed up our priorities. Our leaders happily play fiddles while Rome burns. Or maybe we should now change that to our leaders go to comedy clubs while the Amazon burns.

Hot

It’s hot. Yes I’ve said it now. Yes Yorkshire is hot. When I say hot I mean hot for Yorkshire which probably means it’s probably two jumper weather in Arizona.

A grand day for a trip to the zoo.

Clearly the zoo animals had the right idea. Stay in the shade and watch the silly humans walk round in the blazing sun.

Dad can I have a slush.

What a grand idea. Unfortunately the kiosk informed us that they had just switched the slush machine on and if we came back in a couple of hours they should be available. It was a similar story with the ice cream machine. So we purchased from the limited available snack range. Sat in the hot sun with two cider lollies and a bag of just fried hot donuts.

Dad it’s a good job your a professional athlete or you would be getting a Dads Belly.

Clearly a kid with Aspergers don’t have a sense of humour. Come on Hollywood get your facts right.

Dad it’s getting too busy.

And with that we left. But the zoo gave us one last memory. As we were walking out of the main door a delivery driver had arrived and asked a parking supervisor where he was supposed to drop off. He was told “Through those gates. Just unbolt the lock and drive into the compound. Just make sure you lock the gate immediately”. The delivery driver in a slightly alarmed voice asked “Are you sure”.

Visions of Jurassic Park and a driver about to come face to face with a suitably pissed off carnivore came to mind. Clearly the driver had similar thoughts as he made sure he round his van window up before he ventured any further.

Me Me Me

Blue skies have been a rarity over the last couple of weeks. Strangely this photo is a few weeks old. Can’t remember the last time I had to water the tomato plants. If anything it’s more about trying to stop them drowning in the rain water. The mad dog is currently sat looking out through the back door. Yet when I open it for him he just continues to sit and seems to shrug – if you think I’m going out in that you have another thing coming. Other areas of the county have seen bridges swept away and a Dam almost breached. Wasn’t it only a few weeks ago I was talking about Yorkshire and temperatures in the 90s. Strange old summer.

We have largely been cut off from the outside world this holiday. The occasional and extremely brief trip to the shop but son has stayed in the car. Trip to a castle but at a time (and with the poor weather) that it would be largely empty. We are thinking about a trip to another castle, a zoo and hill walk – but these will be scheduled at the quietest times possible. This is how our son likes it.

But it does have a downside. Next month son will return to school. Small site with over 800 kids and adults. Its just not a natural environment for someone with Aspergers. It doesn’t help that within a few days of school opening it’s the anniversary of his mums death. It not easy for anyone but no kid should have to go through that.

Soon we will need to start the process of getting him as ready as possible for that dreaded return. We will have a few visits to the school. A word with the caretaker will allow a walk round the empty corridors. But that just won’t prepare him for so much noise, so many faces. So we are going to have to visit a few busy places. A couple of trips to a Supermarket. Maybe a visit to a popular museum – York’s Train Museum. It’s a balancing act trying to acclimatise yet not trying to unnecessarily spook him.

The other part to this is ME. It’s about trying to get ME used to people again. It really doesn’t come naturally to ME. Just look at that it’s all ME ME ME with me. I blame it on the rain.

Current mood – Dampish….

Summer Rain

It’s SUMMERTIME. It’s YORKSHIRE. It’s still RAINING.

As a kid I remember being told if it was settled and fine on the 31st July then the rest of summer would be great. However if it was wet on that day then summer would stay poor. It’s funny how often we have great weather in July then we hit the 31st and the weather breaks. So basically here in Yorkshire at this time of year – once the weather breaks it stays broken. But it’s great conditions for ducks.

See it’s true the Brits are always taking about the weather…..

Today was supposed to be another attempt to visit a new place. A local castle. Unfortunately lots of rain stopped play. So we will try again tomorrow.

Dad if we go now then we will have the castle to ourselves. But it’s a ruin. So no cover. Going to get so wet. On balance I will take a risk on crowds. This is way beyond wet.

Yet one hour later.

Dad can we go out and play footie.

It’s pouring down.

When the aliens come to invade earth they ain’t going to say – it’s raining we will give it an hour.

So in the pouring rain we played football then it was aquatic trampolining. Drenched. That wet that you can feel your feet shrivelling up. That wet that the football becomes like a bar of soap and weighs as much as a set of dumbbells. That wet that the ducks bugger off inside.

Tomorrow the colds will start but today it’s fun.

And still it rains

The heatwave is here in Europe but it’s refusing to cross the North Sea. While Bern is getting 34C, Madrid gets 35C and blazing sunshine good old Yorkshire gets drizzle and 12C. So still it’s proper weather.

And so as the weather sticks to my post from earlier today, the system also continues to follow that posts script.

Another day and another system letter. A service we did have access to but which has dried up recently. Today brings the confirmation. Government cut backs so the service provider has to prioritise and our son is currently seen as a low priority. So it’s another service we have to reapply for and go through a new assessment process. It’s just not fair on kids like our son.

Waiting

Apparently a heatwave is about to hit Western Europe. I’m not sure the required paperwork and clearances have been signed off for Yorkshire yet. As a result it’s gone back to cold, cloudy and very wet. Here this is called proper weather.

Anyway let’s see if the much vaunted hot stuff arrives. Knowing our luck it could be a long wait. But we are accustomed to waiting for things.

  • Snow at Christmas … 10 years
  • My so called football team winning a domestic trophy … 64 years
  • A U.K. Van Halen Tour … 35 years
  • Last Total Solar Eclipse in Yorkshire … 92 years, next U.K. one 2090

We can add to these the following waits.

  • Bereavement counselling for son … over 2 years and counting
  • Waiting to have son’s dyslexia initially assessed by an Education Psychologist … over 3 years
  • Aspergers Review and Assessment … 2 years
  • Dedicated Aspergers Therapy … 1 year
  • Anxiety Therapy … 6 months
  • Speech Therapy … 4 years
  • Paediatrician Assessment … 1 year
  • Parent Training on Autism … Never going to happen So far 5 years

You get the picture. Nothing comes easy. As a parent. As an Autism Parent. As a Aspie Parent. You have to push for the support your kid needs. Constantly chasing up contacts. Everyday seems like a new or recurring battle. Letter after letter. Chasing up phone calls. That’s something which isn’t mentioned when you start your new life journey. You sort of assume that the professional help will be there when you need it. You quickly find out that the professional help is withheld or is delivered at times to suit the system rather than the child.

What the system doesn’t seem to appreciate is that you get such a short window of time to foster real progress. As one psychologist said

Up to about 14 years is the development sweet spot. That’s when the real, long lasting progress is usually made. That’s when you have a chance to start closing the educational gap. After that it becomes increasingly difficult. If it’s left too long then its probably just about trying to stop the educational gap widening too quickly.

The frustration that causes you. It’s hard to explain that feeling. Maybe constantly walking in treacle. Every step forward is such an effort and yet you are so far away from your destination. But the fight has to be fought. As long as our son wants me to keep pushing then I will keep pushing. That’s what parents do.

Crop Circles

You can’t beat a good crop circle. Such intricate geometric patterns. These aliens are clearly very artistic with boundless amounts of patience. It’s kinda reassuring to know that the earth is clearly the preferred canvas of choice for alien art.

Unfortunately something is a clearly amiss with the Yorkshire Crop Circles.

Have the aliens that visit Yorkshire been indulging in too much Newcastle Nuclear Brown Ale or Black Sheep Holy Grail Ale.

Or are the Yorkshire Aliens the Galaxy’s avant-garde pioneers. No intricate geometric patterns here. Or maybe it’s the weather. You can imagine an alien more at home in fertile hospitable climes saying something like this as he is starting his Yorkshire Crop Circle in the pouring rain

Bugger this for a lark let’s get it done as quick as possible then we are out of here”

When I told this story to our son he just looked at me with that look… thought for a few seconds then said.

Dad why on earth would an alien fly all those billions of light years to do a bit of art then fly back again. You need to look for the rational explanation. Clearly we have some mighty big field mice these days”

Clearly the all too common stereotype that autistic people do not have a sense of humour is clearly true which thus means we need a much bigger cat….

Apex monster

Apologies for the photo the camera phone has one or two slight limitations.

More native Yorkshire animals…. As you can see it’s the usual baking sunshine and deep blue skies on a typical British bank holiday. What is interesting about this photo is the way you can see an apex predator bully another unfortunate creature. Those poor Polar Bears. They just don’t stand a chance with a Gull. Rumour has it that the next evil galactic creature Marvel will replace Thanos with will be a Seagull. Maybe the one who we watched chase seals off to eat their food. Or these chaps who happily took the meat off the bears. Or maybe the one in the car park who we watched walk up to a parked car and start violently pecking at it it’s door. Or the one we saw sitting next to the tiger clearly eyeballing him. Or the one who crapped on my car from front to back.