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.

Socks

After my dogs failed attempt at love making we walked further down the path. Unusually for Yorkshire it was sunny and warm. So I donned my baseball cap. I must admit I’ve never really liked wearing a hat. Just doesn’t feel right – but needs must. As soon as the sun goes in the hat comes off. I would hate the prospect of wearing it all day every day.

One of the most pronounced aspects of our son’s Aspergers is his sensory hypersensitivity. He just hates the feel of certain objects and materials. For example he hates the feel of wool on his skin. He hates the feel of a scarf round his neck. He even hates the feel of the wind on his legs so he has not worn a pair of shorts since he was a toddler. He calls it an awful, almost painful sensation.

It is a common experience for many people on the spectrum. In particular the feeling can be worse when it’s centred on the hands and feet. It can materialise in different ways. Some find socks a blessing as they hate the feeling of the floor on their feet. The science talks about the brain have difficulty integrating the information from the five basic senses. Sensory Integration Disorder. Often we find the science interesting but of little practical help.

With our son he has no sensitivity related to his hands but his feet are another matter. He has always hated the feel of socks. He calls it the ‘worst feel ever’. You can see his body shaking when he has to put a sock on. At home it’s not a problem. In the garden it’s not a problem. He is always barefoot. When we go out he will often have shoes on with no socks. Even if this means getting blisters as that sensation is nowhere near the agony of socks. It helps that in the normal run of things he has such a high pain tolerance.

But for school he has to wear socks. We have tried ones specifically designed for autistic people but these did little to address the problem. Now we buy seamless ones which are as short as we can get away with. But they are still an unpleasant feeling for him. We have tried putting pressure on the feet (squeezing with your hands) or brushing the feet with a surgical brush prior to putting socks on (trying to desensitise the skin) – no help. Imagine trying to concentrate for 8 hours with that feeling gnawing at your soul. As soon as he returns home the socks are rapidly discarded. Son is happy and the flying socks makes the dog particularly happy as well.

Our slope

Finally it stopped raining. Still cold but at least it’s dry. Maybe Spring is finally going to get going. Even with it being cold it’s hard to believe that this photo was taken from our winter ski slope. With our lack of snow this year the slope has remained firmly shut. It’s not steep. It’s not particularly scary. It’s not the longest run. But it’s ours. It’s the very much smaller cousin to the famous Lauberhorn Ski Run. We have it to ourselves. Never seen any evidence to disprove this. I bet even Trump doesn’t have his own ski slope.

It’s one of the advantages of living in the sticks. Not often do you encounter crowds. In fact most days you don’t encounter any human life. That is a relief as if he could see another soul anywhere within 500 yards he would stop dead in his tracks and whisper.

Come on Sherpa pick up the sled we are going home”

But thankfully that has not happened here. It’s happened when we have tried other snow places out. But not here. So now when it snows we stick to our slope.

Two minute walk to the ski run. An hours sledging. Then a two minute walk back to the inevitable hot chocolate and fire. This isolation is so important to our son. He feels safe. He also feels accepted.

You can’t be different when I’m the only one here.”

When he was at his last school some of the kids went sledging at the back of the school. Initially it was just our son and a really lovely girl. For a few minutes they played in the snow really happily. Then the other kids arrived and son stopped playing. He stood at the side and watched for a while. Then he asked if he could go home.

I suspect strongly that I am not alone as a parent in having observed this type of thing. Initially I would try to encourage him to join in. But now I realise the best thing is to revert to my Sherpa role. Pick up his stuff and get him home.

But no risk of snow now. It’s Spring you know…..

During the summer months the field plays home to sheep and cows. That provides a little bit of danger to skiing season. I remember a particularly enjoyable time when I came off the sled and landed in a clearly defrosted cow pat. Not sure what would be worse – concussion from a frozen pat or the feel of cow poo over your body and on your face. Probably not Concussion….

But today the rain has passed, no snow so you can stand at the top of the ski run and admire the view.

Why this path

I was talking to a farmer today. He was saying that he desperately needed some rain for his crops. The ground is bone dry. Wow Yorkshire needing water, that must be a first.

Its been one of those days. Dropping things. Losing things. Breaking things. Not being able to remember which things I’ve lost. Writing stupid things in comments that I shouldn’t have. Arriving in plenty of time for an appointment then spending ages trying to get parked and ending up late. Repeatedly tripping over the cat. Breaking the hoover – again. Burning the toast.

So a walk was much needed.

It’s really odd walking down this path. It’s a walk that just skirts farm land. We have much finer routes with better views. Basically it goes round in a big circle. Might be able to call it a crop circle – not sure why ET would travel all those light years to look at this bit of land unless he or she has a pressing need for sugar beet and has a rhubarb fetish.

We would often come down this particular path before we had our son. We would talk about starting a family here. Planning for the future. Then with a baby and the pushchair we stopped venturing down this route. Then the world changed and I completely forgot about most things. Recently I’ve started venturing here again.

Memories flood back. Sadness come in waves. I often feel lonely and isolated here. It doesn’t seem right walking here without her. And yet I still come. Why? I honestly don’t know. Maybe I’m waiting for something to happen here. Maybe its a link with the past. Maybe it’s because it is so rarely used by others. Maybe it’s because you get to walk near the farmers crops. Maybe it’s because you don’t get any mobile phone signal here. Maybe I’m trying to remember something important. Maybe it’s just a random thing. Just don’t know.

Maybe I will never work out why I currently need to walk this path. One thing I do know for sure is that this is Yorkshire and this path will be very muddy soon…. Maybe that’s it. I like Mud. I did have a Mud cd. I can still remember the words to one of their singles. Thats an official test to see if you are ancient – can you still sing Tiger Feet. Please tell me I’m not the only one.

Nightmares

3.30am (Yesterday)

Dad I’ve had a nightmare. The Great Heathen Army came looking for me. They keep swarming over the hills towards us”

That time during the night is not the optimum time for my brain to discuss Norse Armies. Especially ghost ones. But parents find ways, especially when they are beyond tired. You just want the best for your kids. It’s tough when you see them distressed.

What weapons did they have.

Blood covered swords, hammers and axes

Ok now imagine them with some silly weapons. Something like sticks of rhubarb.

Bananas”

Perfect. What are they wearing

Viking clothes”

No make them wear something silly, sillier the better. The least scary thing you can think of.

Summer dresses”

Perfect. Did you see the Viking Leader.

Yes he was massive. A fearsome warlord.”

Would he be so fearsome if I was the warlord.

Your not massive or fearsome”

That’s the point.

Dad you will need a name. Your version of Erik the Red, Snake in the Eye, Forkbeard or Ivar the Boneless”

Ten minutes later much laughter. Some of the names are unprintable. But

  • Erik has lost the remote control
  • Halfdan Apple Crumble Slayer
  • Bagpuss the soft furry one with fleas
  • Ubba the demon cook
  • Sigurd my pants are buried in the garden
  • Sven Fork Lightening Farter
  • Ivor Big Arse

Tonight a bit of silliness quelled the storm (or to be more precise the Ghost Viking Army). Son found sleep again. But it’s tough. Tough on kids stressed out. Tough on the patents. My batteries seem pretty flat. But that’s what you get when you sign up to be a parent.

Sleep won’t come for me but at least I can have some bizarre daydreams about me being a Viking warlord, running over the Yorkshire hills in my finest summer dress armed with a stick of rhubarb and a banana. Now that is the stuff of nightmares.

Pepper

Today was a trip to the Zoo. Cold and a bit damp but so worth it. Helps take son’s thoughts away from school. Animals never fail to deliver. Need to make him smile.

We bought a heavily discounted season pass last year. Unbeknown to a certain Dad the pass expired last night. So the trip was significantly more expensive than expected. As we go every couple of months the pass is worth it. Not often can you say that about the stuff you end up forking out for.

Son challenged me to the usual ‘who can spot the Painted Dog first competition’. As ever Dad lost. So what was the forfeit. In the cafe I was to buy a coffee. I could enjoy half the cup THEN….

It was seasoned with pepper. Plenty of pepper.

Strangely the Peppered Coffee was not the worst thing I’ve tasted this year. I can think of a few horrible tasting Jelly Beans which take that particular award. However I suspect Peppered Coffee isn’t going to feature too heavily on the Starbucks menu.

It certainly cleared my blocked nose.

Tonight we had a lovely dog walk. Enjoying an other world type sunset – all with an underlying peppery undertone.

Perfect Sunday Mornings

For us the perfect Sunday morning was a Swiss one. Maybe I should get sponsored by the Switzerland Tourist Board – any free bars of Toblerone would be happily received ….. in my dreams. Suspect that the Visit Yorkshire Team wouldn’t even give us a free stick of rhubarb.

A leisurely breakfast of hot chocolate, caffeine, freshly made bread, butter, various cheeses, fruit and birchermuesli. Sat by the lake looking at the Alps.

Then a short walk to the boat stop and wait for the precision perfect boat to arrive. Sometimes it’s a stunning Steam Boat.

Then sit and watch the world go by for 2 hours. Stunning views. An early wine or fresh peppermint tea. Maybe even some Swiss choir signing. Certainly some chocolate.

Happy Days.