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There is a storm coming…

A little bit of a Northern Lights Storm….

Need to keep remembering what a staggeringly wonderful world this can be.

The Government has started a formal review into the rising demand for ADHD, Autism and Mental Health services. But here’s the problem about that….

It’s the starting point for the review.

Setting up the review The Government has already stated what they see as being the key problem, ‘way too much over diagnosis’. Is this political opinion based on clinical or finance advice. Is it centred on a concern for individual welfare… sadly NO. The starting point isn’t about the families who can’t access the help and support they need, its not trying to help those struggling because they can’t access help, it’s definitely not about expanding and extending services . Rather it’s about a budget line on a spreadsheet which the Government wants to make much smaller. It’s about saving money. You can see what the end goal is….. Cutting the Special Education Budget by reducing which children can access services, cutting benefits paid to adults and reducing NHS services in these areas. THEN the Government will try to come up with a PR campaign to make it sound like it’s anything other than a budget cut. But it WILL be a budget cut probably dressed up as ‘helping’ those written off’. ‘Too many’ will be said to have been ‘written off’ by Doctors when they diagnose patients with ADHD and AUTISM, ‘allowing ’ too many education, benefit and support claims. And thus the Government will say that the best, and kindest way to help children and adults will be to just cut their benefits and services, ‘encourage’ them and families to help themselves. Remove more tailored education support and force more adults back into work regardless of their fitness to work. The last Government tried to do this, sadly this Government looks like they might do it this time.

Where are all these thousands of additional ADHD and Autism friendly jobs…..

What happens to the children who can’t access the Special Educational Services they need, have Teachers the training and spare capacity to pick up the pieces…..

Who’s best placed to make a clinical diagnosis, a Doctor or a Politician…..

Deep Sigh. It really shouldn’t be this way.

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Extra miles

A trip out to the beautiful Lake District, a three hour drive from us. Carefully chosen to be a safe, uneventful, Hawklad adventure.

Originally we had planned to park up by Lake Ullswater, well that was the plan. We made it to within a couple of miles of our parking spot and we hit road works. The road was closed and we were sent on a signed magical mystery diversion tour. This part of the world there aren’t ever too many alternative road options. We later found out that this diversion was over 50 miles long and given the windy, narrow roads, would have taken absolutely ages to drive. Thankfully the diversion went past another stunning lake, Thirlmere and we parked up.

You can see why Wordsworth was inspired to write here.

The trip back was an adventure…

A motorway tyre blow out driving at 70mph, two hours stood on a roadside bank waiting for a recovery truck. That wasn’t the place to try and change a tyre. Thankfully a very nice Highway Patrol parked behind our car to ward off any collisions.

Here’s the thing, Hawklad was perfectly fine with the breakdown but really struggled when first the Highway Patrol Officer turned up and then the Recovery Mechanic. It’s the fear that he could be seen, will stand out, will get noticed. Thankfully the tyre was safely changed and off we set again.

Another reminder that as much as you try to plan or micromanage a day, life still happens….

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Little monsters

Every year we get the return of these little monsters….

Stand on one of these and you know it, wow you know it. Try picking one up and it’s like those dreaded Covid vaccine jabs all over again, just this time 50 jabs for the price of one.

And yes, for a month, it’s the gift that keeps on giving. All these have to come down……

The other night I was listening to someone from one of the exam boards on the radio. Not intentionally, I was waiting for my so called football team’s match to start, it was the next programme. Anyways this exam person said something that worried me a lot…..

One of the big complaints about the UK school system is that it is too inflexible, almost like a factory production line. Pushing too many children, regardless of individual need, regardless of if it’s working or not for them, through the same education channels. A one shoe fits all approach. Then the kids get to exams and then often 10 years of schooling comes down to 10 or more written exams, crammed into a couple of weeks. Written exams just don’t suit every child. They often don’t allow the individual child to demonstrate what amazing talents and skills they have. Don’t get good grades in those written exams and you can be way too quickly written off.

Thankfully things started to change a little. More course work counting towards final grades in some exams, allowing scribes and allowing typed answers. Hawklad got a bit more time and was allowed to type his answers, two fingered typing on a school laptop. Surely more flexibility is good for our children, it must be about making schools work for each child.

Back to this exam person on the radio. He was talking about the spread of AI and the problems it’s causing. AI has apparently got so powerful, it is just too professional at writing top answers to whatever you ask it. He was saying that he’s been in meetings nationally were there has been real concern that the treasured school exam integrity is being undermined now. It’s too easy for pupils to use AI to write top mark coursework, producing complete essays in just a few seconds and because AI is developing, it’s way harder for exam boards to pick out those pupils who are ‘cheating the system’ . It is also way harder for exam boards to make sure those pupils sitting exams via a laptop are not also using AI to cheat the system.

So one option being considered is too go back to old school exams. Absolutely no coursework counting to marks, no use of laptops in exams. Pupils sit old school exams using just a pen. That way the exams reputation and integrity is protected……

I never heard him mention the needs of the children once. It was all about the needs of the schools, the exams and the economy. No consideration of if AI could allow for more individuality in schooling, provide more options for teachers to find what works for each child. If they did go back to just old school written exams, it’s going to hurt way too many kids, all to just protect an outdated system. What a huge mistake that would be.

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Night shift

Misjudged a late evening walk. Walking past a graveyard, located down a very deserted country lane, just as the night roles in. Always a bit spooky.

Somethings are always a bit unnerving.

In the UK, having to contact a company called BT, that’s unnerving. BT is a big telecoms company.

BT aptly can also mean Bloody Terrible…..

BT provide our broadband and telephone service. Both have been broken for 6 days now.

Do you remember when you had to queue when ever you went into a branch in person. Then the Call Centre was introduced and you ended up queuing for that, listening to the endlessly awful piped music and recorded message – ‘your call is important to us’.

Then CONTACT US ONLINE was brought in to stop the hours wasted waiting in person and on the phone. With good old BT you now have to queue online to use their online service.

Initially the wait time was 15 minutes, which in normal time was actually over an hour. The ‘less than a minute’ wait time turned out to be another 20 minutes. Deep joy.

Fast forward 6 days and still no telephone or broadband. Back on to BT again for the 6th day running. This time going old school, having to use my mobile to call them. Apparently to the BT person, we weren’t a customer priority as we were just a reduction in service rather than a service down issue. I was keen to understand if we only get two services from BT, and both are 100% not working, why wasn’t that service down. Service reduction sounds like we are still getting some services….

On the call, I think my tone went from friendly, to cordial, to a little gnarly… But nothing over the top, no raised voices, quite calm really. But it was a bit too much for Hawklad. One of the things he’s always struggled with is conflict. It throws him, he gets anxious, completely on edge. I have to be careful and over the years I’ve got better, much calmer, trying to avoid putting him through those emotions. Very few things brake me out of calm mode these days. My Football Team’s inability to pass to a colleague and the name ‘Nigel Farage’ are the only things recently to bring on the red mist. But I can’t micromanage every situation. When he went to school, one of the things that constantly unsettled him was the daily, frequent conflicts. Teachers raising voices, pupil on pupil stuff. He would frequently struggle to differentiate between real conflict, minor disagreements and play acting. I wonder if it’s because he struggles to read social interactions, pick up on tone, body language, taking some dialogue too literally. It could be that he really doesn’t like seeing anyone suffer or be hurt. But it does make the modern world a difficult place for Hawklad to fully integrate in to. We are still trying to figure that one out.

And yep, still no broadband……

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Edinburgh

A blustery old day for an adventure. A four hour car ride heading north, brought us to wonderful Edinburgh.

Eventually we gravitated to Edinburgh Castle.

The Castle has so much history and atmosphere, but the thing that always gets me, is the view.

A view with added Rainbow…

It was busy in the Castle, really busy. Fortunately we bought tickets the night before, as on the day it was completely sold out. This was a challenge for Hawklad. Under the right circumstances he can just about cope with crowds, but this at times felt too uncontrolled, too unpredictable. He feels more comfortable when a crowd is heading mostly in one direction, where he doesn’t have to face too many faces heading towards him. But here people were heading in all directions, way too random for him. It wasn’t just visually, unpredictable sounds, from all directions proved disorientating. He did manage to see a good part of the castle but some places he respectfully declined.

We agreed on a winter trip back here when hopefully the crowds will have thinned a little. That might well be a two woolly jumper trip…..

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Time

Someone asked why do we go to so many concerts…

The obvious answer is that we both like music. I seem to have inflicted my musical tastes on Hawklad so it’s also easy to agree on which bands to see.

Maybe part of it is also to try and create as many memories as possible. It’s not always easy for Hawklad to feel relatively as ease in the wider world. But we have found a way to make concerts work for him. They are definitely something we can plan and do, minimising some of the risk factors for him. Concerts in that sense are easier to setup, much less problematic, more controllable than say going on holiday. Since our world changed we have been able to make happen quite a lot of concerts without encountering too many things going wrong. Over those nine plus years we haven’t managed yet to go on holiday. Still just feels a step too far for him yet. You can’t micromanage every factor that could happen, but at least with concerts there is a level of predictability that makes them safer bets for Hawkkad.

But we are still trying to find a way to make a holiday happen.

So we found ourselves at the new state of the art arena in Manchester, to see ELO on their last tour. This time life’s unpredictability happened to the band. Poor Jeff Lynne broke his hand in a taxi accident just before the short final tour started. He was also struggling with a systemic infection which was getting worse. The concert was really good but you could see Jeff was starting to struggle. He managed to finish the set but needed to sit for the final few songs and was quickly helped off stage at the end. Subsequently he had to cancel the final two concerts so currently we saw the last ELO concert. Maybe they can still do something down the road when he is properly healed.

Driving back from the concert I realised just how many of the bands I grew up with, bands I love and now Hawklad loves, are getting older. Time is moving on. More and more we are seeing bands on their last Tours. Some stars are sadly passing on. Hawklad never got to see Ozzy, we tried twice but the concerts were cancelled on health grounds. Wasn’t to be. I saw him once in the eighties, never imagining that would be the only time.

Time moves on….

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Years

I wonder how many years these wooden poles have survived the North Sea….

Looking in the mirror most mornings, they have clearly weathered way better than me. The front one has even got more hair than me. I’m not jealous, much 😂😂😂😂

We’ve been coming here since Hawklad was just starting school. Always the same routine. Find a parking spot where you can see the beach, let Hawklad see how busy it is. Too busy for him and we drive off, no questions asked. If it’s quiet enough, we hit the beach. Sometimes we don’t even park up, if the car park is busy, the beach will be.

So how does he manage concerts and now a F1 race.

We have a routine. Always try to buy the two seats at the end of a row, the back or front rows are best. If those seats aren’t available, then we don’t go. It’s the same for the cinema, has to be the two end seats on the front row. Hawklad takes the end of row seat. Sometimes that’s not enough and Hawklad decides it’s still too much. There have been a few concerts, movies and a football matches where it just never happened, still feeling too crowded, just never felt right for Hawklad.

At Silverstone it was even better, 168,000 watching an F1 race. But we still were able to find two end row seats, with no seats behind us. Plus next to our two seats was a roof support column, three more seats missing. Hawklad found space amongst the masses. All we had to do is arrive really early to miss the queues to get in, let Hawklad get to his seat before the crowd mayhem started. Setting off at 3.30am sorted that out.

That felt early, too early. Probably one of the reasons I’ve weathered worse than those beach poles.

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Grand Old Castle

Brough Castle, built around 1092 on the grounds of an old Roman fort.

Once a grand old well kept castle. Once an impressive, seemingly impenetrable fortress. Attacked by an army from Scotland, destroyed and rebuilt. Rebuilt to be stronger, even more impenetrable. It was for 250 years…..

Then it met its new destroying army in the form of a Christmas Party… in a desperate attempt to cook the Brussel Sprouts properly, a fire broke out, destroying much of the castle.

OK I’m guessing on the Pesky Green Veg Villain, but something went badly wrong with that Christmas Feast in 1521.

The castle was partly rebuilt in the 17th century, but within a couple of years, fire struck again. Maybe don’t have 24 fireplaces…..The harsh northern weather has subsequently taken its toll since then.

Far too many children in the UK never get the support they need from the health and education systems. Hawklad was fortunate, it took over two years but he finally started to get some of the support he needed. Over the years that support made a real difference.

Then the day he reached 18, it was pulled. There is no equivalent adult support service. It’s only been a few months since then but I have started to see some changes, not positive ones. Hard earned progress starting to slow, halt or even reverse.

How many more are in the same position.

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Calm needed

A shed load of calming thoughts needed, a few minutes thinking Switzerland.

The latest madness to add to the ever expanding simmering pot of mayhem comes from the US Health Secretary, Robert F Kennedy. I can think of a few F words that would fit perfectly there. In his words ‘Autism destroys families’.

Absolutely staggering. ‘Destroys’ implies burden, something intrinsically bad which needs isolating and eliminating. Implies the desire to remove from day to day life. This kind of language lays the seeds for Fascism.

I’m sorry Mr F….. Kennedy, what actually destroys families is the lack of meaningful support, it’s the constant fighting the system, it’s the ill informed, hurtful and dangerous comments made by deluded self absorbed politicians. Sadly Mr F…. isn’t on his own in the political world in thinking this way, we have them here in the UK.

Mr F…. Kennedy you are so WRONG. It has been and continues to be the best ever privilege to be a part of a happy, loving Autism Family. Every day I learn so much, see so much beauty, experience so much wonder, togetherness and LOVE.

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Made it

It’s that time of year when the Bluebells start to appear. We have a Bluebell Wood close by but today we headed a bit further. An hours walk over streams, fields and gentle hills. To a wood that we always talked about venturing to when we first moved here but never got round to it. Two decades later, much water under the bridge and finally we made it.

Beautiful walk but walking across farmers fields today bothered Hawklad. Just didn’t feel right for him, started to unnerve him. That’s the thing, somedays he can freely walk these paths, somedays not so. It’s not programmable, not predictable.

I was scrolling through an autism support website and a thread talked about employment. Just how difficult it is still to find employers willing and able to make the environmental adjustments and put in place the support individuals need to secure regular employment. Then for those in employment just how difficult it is to hold down regular employment. Many employment settings are just not autism friendly. On top of that, many talked about the unpredictability of work. Some days work is possible, other days it just isn’t viable. One young person described it as ‘some days I can walk into the office and work, other days I simply can’t get through my front door’.

Yet there seems to be an assumption at Government level, take away benefits and people will suddenly find regular employment to more than replace the lost benefits. Life isn’t that predictable sometimes.

Today we abandoned the farm tracks and walked along the quiet roads. That worked for Hawklad.