Posted on by bereavedandbeingasingleparent · 44 Comments

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.

Posted on by bereavedandbeingasingleparent · 32 Comments

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….

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 · 26 Comments

Cliff

Every passing storm takes a piece out of this cliff. ,

Thinking about it, that can feel like life sometimes.

It feels like that every passing storm takes a little piece out of me.

Feels like there has been a few of those passing storms since our world changed nearly 9 years ago.

Or maybe, just like that cliff, each storm just helps reshape me a little more……

Posted on by bereavedandbeingasingleparent · 47 Comments

Tree house

Now that’s a proper tree house…

You just never know.

There is a chap in the village. Seems a really happy chap, enjoying retired life. Always pleasant, probably smiles more than me. Easy to talk to. Seems to have plenty of friends in the village and always visiting. He walks with a stick, doesn’t walk too far but manages to spend a lot of time with his wife in their perfect, beautiful garden. They seem so relaxed.

This week I found out that he is really struggling with depression, has been for a couple of years now. He is deeply unhappy with retired life. Deteriorating Mobility issues forced him to give up his much loved job. He is unable to take part in his favourite hobbies now, golf, cycling, hillwalking, ballroom dancing, tennis. He feels like he has to spend far too much time in the garden these days. Even their holidays have changed. Once active, exploring filled adventures are now quite limited, quiet, sitting by a pool, in a cafe or on a patio holidays, plenty of time to read. The type of holiday they both always wanted to avoid.

I had no idea.

You just never know.

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 · 47 Comments

Can’t put my finger on it….

Nice calming photo before the rant…..

Politicians in designer power suits, talking platitudes and manicured slogans. On their 6 figure pay checks, with second or third lucrative jobs plus more than generous expenses, gold standard protected pensions. Dressed to kill while they announce drastic cuts to disability benefits hitting many of the most hard pressed and struggling members of our society.

Spin Doctors please note, it’s not a great look seeing politicians smiling to camera while announcing disability cuts….

Can’t quite put my finger on it….. Something not quite right about this in my mind…….

Yes this is a Labour Government who has spent the last 10 years howling with protest whenever the previous Government went anywhere near welfare cuts, taking the moral high ground. At least the Conservatives are upfront about it, if they can could get away with it, they would cut.

Listening to the politicians, they seem to have no idea about the real lifes many in the country are struggling with each and every day. In politician world many receiving benefits are just avoiding work, exaggerating disabilities, over playing the impact of mental health issues and are clearly a burden on society, holding the country back.

Deep sigh.

Benefits don’t lead to a life of leisure, rather they allow people just to survive. Even with benefits many in society are living on the edge or beyond. Plus the process of trying to get those benefits is laborious, taxing and angst filled. The system is already stacked against claimants. The ‘cut benefits and suddenly people will get a job’ tag line just isn’t the reality for many. Health, Mental Health and Social Care support is patchy, overstretched, chronically underinvested and in many areas, NONE EXISTENT. Many are having to give up work or reduce hours to care for loved ones as a result of the lack of support. Now even these carers are facing losing the meagre care allowances they currently receive. So if these carers are now financially forced to stop caring, who then looks after those you need full time home support.

Unless this can be reversed or properly thought through, this is going to be a nightmare for many in our country.

Definitely deep deep sigh.

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 · 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.