Posted on by bereavedandbeingasingleparent · 31 Comments

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.

Posted on by bereavedandbeingasingleparent · 38 Comments

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.

Posted on by bereavedandbeingasingleparent · 41 Comments

Storm Farage

A peaceful walk in a Forest. But it’s not always this peaceful. It took the Forest Rangers quite a while to deal with the aftermath of the last storm which hit the area a few months back. Lots of tree damage still evident.

In the UK there is a new word hitting the dictionaries. One which has several meanings. The word is FARAGE. Often found in the phrase ‘Nigel FARAGE is a …..’

FARAGE can mean to some – a wise and gifted political orator who is a man of the people.

But FARAGE can also mean ….

a Charlatan…

a Dangerous Opportunist…

someone who feathers his own best…

someone who tells others it’s wrong to be a part of Europe, has denied the right of his countryfolk to have free access to Europe yet keeps his own European Passport, enjoys unlimited access to Europe for himself .

someone who screams immigration is bad/foreigners are taking all our jobs, filling our schools and hospitals, YET is married to a French Woman

someone who bemoans Europe for how it’s wastes taxpayers money yet then keeps his lucrative European provided pension for life…

someone who is a fascist…

someone who is a racist…

someone who is a right f#@### w#@@#£#

The word FARAGE can also been a family commitment. Hawklad is one of those souls who struggles to find fault in others. Yet with Nigel FARAGE he gets very frustrated, very angry. ‘How can people vote for him, how can they not see through him…’

Once the idea of FARAGE being our Prime Minister seemed like a joke, but then we did get Johnson and Truss. Sadly now his party are increasingly winning local election seats. Unbelievably it could just happen. He could be in charge in a few years time.

That thought horrifies Hawklad. My thoughts are unprintable… Hawklad has made me agree (I didn’t take much convincing) that if that disaster ever happens, then WE will seek to leave the UK. See if we can move to say Ireland or France or Germany or Switzerland or Canada or somewhere that will have us.

All because of a nasty storm called FARAGE.

Posted on by bereavedandbeingasingleparent · 26 Comments

Small city

Some readers of the New York Times will appreciate the geography lesson that went along with a recent entertainment review. A review of the Gary Oldman play I mentioned in the last post. Helping its readers they described York as a ‘small city 210 miles north of London…’. Maybe they could have added ‘strangely that the USA’s largest city by population was in fact named after a Duke of this small English city and a small English city which was founded over 500 years prior to that former small New Amsterdam east coast of America trading post was ever dreamt of’. Or maybe they could have further added that it was ‘a small European city which was once the political centre of the Roman Empire’. Although at least one Glossy Las Vegas Hotel probably claims that distinction now as well’.

There might be some form on those type of heritage claims… Trump’s Special Envoy has recently compared the historic and stunningly beautiful Elysee Palace to Trumps Mar-a-Lago Florida Clubhouse.

There are no words 😂😂😂😂😂

But there is a real point here. Quite a few of us often assume that our little part of this beautiful planet is ‘the centre of the known universe’, and everyone will have heard of it. It doesn’t work like that. Life doesn’t work like that. Billions will have absolutely no idea about a provincial small city on an unremarkable island off the west coast of Europe.

Today I was driving towards that small provincial northern city while listening to a radio news item on GRIEF. One recently widowed woman talked about the struggles she was having with banks and large companies, how it was a nightmare to try to change things like joint accounts and pensions. I can so relate to that, even after nearly 9 years and countless communications, still we are receiving letters addressed to Hawklad’s Mum. The Widow added that she often felt like she was going crazy. Her world had crashed to a halt yet when she spoke to people at the banks and companies, it felt like it was business as usual for them. The world was still turning and she had been left behind.

That’s so true, I so understand that. I can remember trying to sort things out with banks, I felt like a wreck, time had stopped, yet I could see and hear the world continuing as normal all around me. People paying in money, sorting out loans for new cars, new houses. Staff talking about holidays, television and nights out. Couldn’t they see me, but why should they. The vast proportion of those I could see and hear had no idea who I was, no idea what I was going through.

Only now can I truly see this.

Posted on by bereavedandbeingasingleparent · 42 Comments

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.

Posted on by bereavedandbeingasingleparent · 45 Comments

Same story

Caught the end of an interview with a UK politician who was giving his esteemed views on what was holding the country back and he specifically mentioned AUTISM…. That’s right along with Tariffs, energy costs, international conflicts, planning delays and the impacts of climate change, the cost of benefits, he specifically mentioned AUTISM….. He quoted the number of children currently diagnosed with autism and argued that it was clearly too high, and the rising numbers didn’t make any sense. He added that we weren’t seeing the same rapidly rising numbers in Adults…. And how far too many young people diagnosed with autism don’t get a job after they leave school, he argued reliance on benefits was a root cause of this. So if you cut the benefits available, more young people will enter (forced back into) the workforce. He concluded that the country needed to go back to some good old parenting with a sprinkling of tough welfare love. Welfare reform will over time stem the tidal wave of autism while reducing the tax burden on businesses and hard working taxpayers.

I keep hearing this argument more and more in 2025. Similar arguments are being directed towards a range of mental health and disability areas. Tough love will work and reduce the tax burden. One Government Minister even likened reducing disability benefits to cutting a child’s pocket money and encouraging them to get a Saturday job. Let’s not forget, Ministers usually closely stick to a script pre agreed by those at the highest levels of the Government. Those in charge don’t care or they are completely out of touch with the reality faced by millions they are supposed to be representing.

The reason adult autism rates are not rising is down to a couple of key issues. At the age of 18 autism support largely stops in the UK. Clinicians providing Child Autism Services do not have an equivalent adult service to hand an 18 year old on to. As a result large numbers simply drop off the system as adults. Relatively few General Practitioners (Family Doctors) have detailed autism training and it’s hard for them to make an assessment on the basis of a 3 or 5 minute standard length Doctor Appointment. As a clinician who worked with Hawklad explained to me, if an adult approaches a GP with an autism related issue, the busy GP will have little time to make an accurate assessment and anyway they won’t have any adult services to refer on to. So far too often GPs just end up offering some leaflets on mindfulness and possibly a course of Anti Depressants or sleeping medication.

That’s assuming that GPs are actually approached in the first place.

At school Hawklad was expected to put his hand up to get help with reading, or if he was feeling uncomfortable or struggling. But that meant announcing to his classmates that he couldn’t read something or having to publicly announce he was feeling uncomfortable, that was never going to happen. We might be in 2025 but we live in a world where way too many people have closed minds and the media still paint with inaccurate and harmful stereotypes. Autistic children still get bullied and pointed at in the school setting. Not only by children, sadly by parents as well. So Hawklad never put his hand up and the teachers assumed he was ok, the end result, he never got the classroom help he badly needed. Years later, he still won’t put up his hand with strangers or people he doesn’t trust. Even if he’s struggling, he is unlikely to call a GP for help.

2025 and sadly it’s the same old story.

Posted on by bereavedandbeingasingleparent · 33 Comments

Is this really 2025

Eleven years ago I remember reading a newspaper headline about Autism. I can picture the scene clearly, sat on a platform at a London train station, waiting for my connection back North. A once smart black suit now a bit creased and unfortunately showing clear signs of an egg sandwich accident. Under the headline a politician was claiming that finally autism was now mainstream, embraced and on the political agenda. Individuals on the spectrum were finally going to start to get the help and support they needed. I remember the article so clearly because the newspaper had managed to spell Aspergers wrong….

2025 and I’m sat in a traffic jam, listening to the news. A politician is talking about Autism. Apparently far too many children are being diagnosed as autistic and it’s costing way too much money. The reason behind the rising cost couldn’t be real and was clearly due to pushy parents playing the system. It was unfair on taxpayers, businesses and other parents. That’s why it was right that the Government was going to crack down on the issue. Crack down on the rising tide of Autism….

Is it really 2025.

Posted on by bereavedandbeingasingleparent · 27 Comments

Years

Night time in Newcastle.

Walking to the first concert of the year.

2025 still finds concerts as a dependable friend. A break from the routine, a link with my earlier self for me. An adventure that Hawklad has confidence in and can rely on, a bridge for him. While holidays are still feeling a step too far, concerts take their place.

Some of the concerts are for me, some are Hawklad’s idea, most we agree on. This year is an eclectic mix. Springsteen, ELO, Al Stewart, Iron Maiden, Guns n Roses and Andrea Bocelli.

This one was my idea. Finally getting to see Fish after years of waiting. Left it late, this was his fourth last concert, his last one in England before he retires to his Croft on a Scottish Isle.

I wonder if quite a few in the crowd had the same feeling as me. Got really into music listening to artists like Fish, followed their careers as time passed. Now decades have passed, the bodies aren’t so willing to stand for hours now. Most of the long hair and tight jeans have gone. Yet we are still fans, the music sounds just as wonderful as it did at the start of this adventure. But increasingly we are attending final concerts of our music heroes.

Where did those years go……

Posted on by bereavedandbeingasingleparent · 38 Comments

Last one

The dust is now settling on what feels like a new world. A while back Hawklad had his last bit of support from the Child Mental Health Team. As the threshold for Adult Support is so high and because there is actually no equivalent Adult service, that’s it. The need doesn’t suddenly go away as a birthday is reached, but in the UK, the service does.

It was odd, I wasn’t sure what to expect with the last appointment. Maybe a number to call if he really needs support, maybe some pointers where he could seek help, maybe a support website, a handful of support guides. But in reality it was a simple ‘best of luck’ and you will need to speak to your Doctor if you need help from now on. However Hawklad had already been warned that most Doctors support will be limited to Mindfulness Leaflet and the offer of Antidepressants.

Yes I’m concerned for Hawklad going forward but my heart really goes out to those who need way more support and suddenly find themselves cut adrift. I heard it described as a Trapeze artist who is performing a routine and suddenly finds the safety net missing. Maybe but just maybe the safety net is also there for the artist who can’t even make it onto the high wire. The artist who is struggling to even leave the house, struggling to function in daily life.

Without health support it’s down to self help, family and friends, thankfully Hawklad has some of that around him. But we need to recognise that most of us are not trained health professionals, effectively relying on a Wikipedia knowledge base. But at least it’s still support, importantly support that cares.

BUT many who are struggling are on their own, without any kind of local or specialised support. That can’t be right.

Posted on by bereavedandbeingasingleparent · 41 Comments

Spoilers

After the final online lesson of the day we headed to the cinema, bit of a risk on Valentines Day. Even riskier when the movie is a romantic comedy.

In our defence Captain America was just too full for Hawklad.

This mid afternoon Bridget Jones screening was half full and we were the only males in Screen 3…. As we headed towards our customary front row seats, I couldn’t help notice the amount of wine and champagne bottles that I had assumed had been sneaked in. Even just a small glass of wine there is eye wateringly expensive never mind a bottle. I smiled as I thought back to my childhood. To my seaside towns cinema on the beach. I remember going to watch a dreadful movie called I think ‘ BMX Bandits’ and some nutter managed to sneak a bike into the cinema. Proudly riding round the aisles to distract from the dreadful movie, that kid must have had ginormous pockets to sneak that thing past the ticket collector.

No such wheeled subtractions this time.

We’ve both enjoyed the previous three Jones movies, found them very funny. The latest version is funny but also this time around, sad at times, painfully sad. Anyone who has experienced loss will need at least one hanky. Recently I’ve become way less prone to movie tears, but this one got me.

Sorry no more movie spoilers….

Ok confession time. As I felt the tears roll that I was really conscious of being on the front row. I was reluctant to show signs of weakness for some reason, really daft as I bet I wasn’t the only one. I slid lower and lower into my chair before trying to brush away the tears. What a silly sausage.