Posted on by bereavedandbeingasingleparent · 36 Comments

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.

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 · 53 Comments

The squirrel needs to wait

Today I was planning to write about a squirrel. But at the last minute I’ve changed my mind. Maybe tomorrow…

The Guardian (one of the UK’s better newspapers) ran an article today about autism.

It’s upsetting’: the autistic music fans being shut out of gigs

Its a really interesting read and covers some really important issues facing those on the spectrum. If you have a spare couple of moments I encourage you to read it.

One thing the article is spot on about is that as you get older the support systems fall away and you seem to be left to sort yourself out. It’s so frustrating. You spend years fighting to get your kid diagnosed. If you succeed then you again fight to gain access to services. Hopefully you do get access and then suddenly your kids are getting to an age when the system decides to cut them adrift. It is just wrong.

The article got me thinking about our circumstances. Why does our son enjoy rock concerts yet often struggles in other crowded events. Having talked it though with our son I think we can almost answer that now

  • We only go to venues he knows and feels comfortable with. If we have to go to a new venue we go to see it in the daylight. If you speak really nice to the venue admin they will often accommodate a pre visit to allow you to acquaint yourself with its layout
  • He loves the drama, the noise, the lights. It’s a short fix of sensory overload on the same level as a scary rollercoaster ride. He controls it. If he’s not happy he knows that we can just get up and leave.
  • He loves the way you can wear whatever you want, do whatever you want to your hair, dance, sit, stand, sing, shout, drink, eat – yet no one seems to care. No pointing fingers. No funny looks. No questions. He feels like he can fit in there.
  • It’s so noisy. Too noisy to talk much. He is relaxed as he knows no stranger will talk to him. He still has an element of isolation.
  • He likes the thought that he is doing something which many of the other kids at school don’t do. It’s his hobby.
  • And finally let’s not forget that he just loves listening to Rock Music

Another point the article raised is whether you consider autism as a disability. Because of his diagnosis he is listed in the UK as disabled. Son hates that. He is clear – Autism is his personality not his disability. He does talk about dyslexia being his disability. His invisible disability. One which people see when they want to and ignore when he needs help.

Whether you want to call it a disability or not for me that’s up to personal circumstances. It’s called a spectrum for a reason. Everybody is different. It’s unlikely you will find two specific diagnoses which are the same. The article is right about access. It’s at best patchy and yes some simple changes can open up opportunities for more people on the spectrum. But it is difficult. We went to a Autism friendly hour which our local Toy-r-Us ran a few years ago. It was much more inviting and yet our son did point out that

“If they want to make this completely Autism friendly they should allow us to book slots so we get the shop to ourselves without anybody else here”

One final point. The article talked about earplugs. They are essential but please manufacturers, given my unfortunate incident with one, can we make them edible….