For some reason some of my posts have suddenly and rather randomly decided to remove the comments option. This is not intentional. All options are correctly set and haven’t changed. So I can only assume Skynet or Ultron have started taking over the worlds IT. Lord knows why they would bother with my ancient tech. Anyway I’m trying to sort it. Sorry.
Castle Time
Why is it that when you take the car in to a garage the words you never never hear are
Don’t Worry it’s nothing
It’s a cheap fix
It’s sorted and there is no charge
So today the car misbehaved. Took it into the garage and within minutes was told it needs a new ……. and it’s going to cost £XXX
One of the benefits of a spectacularly unreliable and expensive to maintain car is that they seem to have allocated it its own dedicated service team. We can look at it straight away. It will be ready in a couple of hours.
So we had a couple of hours to pass and luckily we were in walking distance of a castle. A fine ruin of a castle.
Pickering Castle was originally built around 1070. It is reasonably well preserved as it missed out on the carnage which was the War of the Roses and the English Civil War. I hoped that this unplanned visit would count against our sons target of 12 new places to visit. Sadly he pointed out the exact date and time of his school visit here 4 years ago.
I always think castles look better in black and white. Brings out their hidden Hammer Horror character.
It was a fun couple of hours as son explained in great detail the history of the castle. It’s linkages to wider English History and the various different structural improvements which have occurred over the years. I added important stuff like cool places for ghosts to hide.
Unfortunately the hours flew by and all too soon it was time to return to the garage. Luckily they still take cheques. That buys a couple of days to keep the bank manager happy. Son helpfully pointed out that a few hundred years ago I could just have raised taxes to pay for it – probably a Poll Tax. That assumes my role would have been Lord and not Peasant. In my all to likely Peasant role I had better start shovelling that muck quicker.
Alviiiiiin!
I wonder if the cow is even aware of that strange thing in the sky. Should I warn the cow. Probably not – would just think I’m full of hot air.
I think saying stupid or silly things is a release for me. It’s a way of relieving pressure. Diffusing the dark thoughts that can crowd my mind. However that Monty Python in me is often misinterpreted.
He’s a happy soul.
Not a care in the world.
OR
He’s got over things now.
He’s moved on.
That is so far from the truth. Everyday is a struggle. You just have to learn to coexist with Depression and Grief.
I would love to release my inner demons through beautiful paintings or dark soulful poetry. Unfortunately that’s just not me. It doesn’t work for me and the end result is a pile of pants. All it does is bring out my inner Alvin and The Chipmunks. Not sure that would be a box office winner – Alvin and The Grief Trip.
Sorry there I go again.
The point I’m trying to make if Alvin would just let me is that how you appear on the surface is often very different to how you actually feel inside. It doesn’t help that often people don’t want to hear how you really are feeling. They will ask – how are you? They desperately want you to say – fine. And guess what – when you get asked that question your almost preprogrammed to say – I’m ok.
Maybe we should have a deal. From now on let’s all REALLY ask how someone is. When they say fine or ok how about we follow up with – are you really sure. Or I’m here for you I know how tough it can be.
The other part of the deal is when someone takes the time to really ask how you are then be honest. Instead of saying just dandy it is ok to say like shit or not good or I’m struggling. Or if your feeling really brave just say I could really do with a hug.
We all struggle sometimes. Wouldn’t it be a better world if we could all just be a bit more open about that. What do you say Alvin.
Coordination
Beauty in the sky masked evil intentions. Twenty seconds later a successful bombing run covered my car bonnet. Not so beautiful. The one hand giveth; the other hand taketh away.
Basically I have knackered my body up. Medical advice was to rest the right side for a couple of months. No running. If you play football in the garden – don’t use your right foot to kick. That’s a bit of a problem. During my sporting career the left leg has been a bit of a spectator. It is used for standing on and just getting in the way. Nothing else. So since a toddler I have been completely right footed.
So this garden football season was approached with trepidation. The first attempts confirmed the fears. Absolutely useless. Even the frequent cow audience clearly most unimpressed with my attempted kicks.
But a couple of months later and….
With one hand giveth.
The left leg is like a magicians wand. Better than the right foot ever was. Complete ball control, pinpoint passes, power, curling shots into the top corner of our small net. It just shows that with practice what you can achieve.
But with the other hand taketh.
Now the right side is a little less painful I’ve started using it again and just maybe I could be a natural two footed footballer. Guess what. The right foot is now completely useless. Can’t use it. All my hard work has basically switched me from being completely right footed to completely left footed.
Maybe my brain can only cope with one usable leg.
Son struggles to tie shoe laces. He also can’t use a knife and fork at the same time. He just can’t coordinate two limbs simultaneously. It’s a bit like riding a bike. Son can peddle but not at the same time as steering or braking. If he turns a corner he can’t peddle. He did manage to learn to swim but it doesn’t come naturally. It’s either using his legs or using his arms – not both at the same time.
He has been diagnosed with Dyspraxia which often goes hand in hand with Autism. The bottom line is coordination does not come naturally. We have been doing some exercises to work on this. Jumping on a trampoline and catching at the same time has been our single most fun exercise. We have seen some improvements for example he has developed good catching skills. But things like shoe laces are probably going to be life long issues. We realise this. The main reason we do coordination exercises is to help with his Dyslexia, other improvements are bonuses.
Maybe you just have to accept and work with how your body is setup uniquely for you. Make the best of it. We all can’t be brilliantly coordinated like birds. To fly, aim and poo at the same time. That’s beyond me.
Horror Show
So our glorious leader Bonkers Boris has held his first cabinet. And it is truly glorious
- Leadership provided by Bluffer Boris a man sacked multiple times for lying.
- The person in charge of domestic security was sacked for fibbing about holding clandestine arms deals meetings with a foreign leader. Clearly we all accidentally bump into world leaders on holiday and the subject strays away from the beach talk to weapon deals.
- The chap in charge of our kids education was sacked (with calls for him to face criminal prosecution) for leaking official secrets.
- Several of the team would love to bring back hanging and fox hunting.
- The Foreign Secretary apparently thinks feminists are obnoxious bigots.
- A transport secretary who has his own private jet.
- A rich member who thought a dying benefit claimant who was sanctioned for being 4 minutes late for an appointment – should learn the art of timekeeping.
- Another who has recently been found in to be in contempt of Parliament. Something which seems to be a badge of honour.
- The person in charge of housing loves the idea of a bedroom tax.
- A Security Minister who spectacularly cocked up his own Parties Conference security leading to a significant personal data breach for a number of high profile targets.
- A multi millionaire who claimed expenses of 49p for some milk yet struggled to correctly declare £400000 of outside earnings.
- Another rich member who thinks people using food banks are not poor.
- And this obnoxious thing
But we have hope.
In a far off realm a group of brave heroes hold their first shadow cabinet meeting. Ready to come to our countries need in its darkest hour. Modern day King Arthur and his Knights.
Ok one of the heroes clearly keeps falling asleep. But it’s hard work being this good. And not a top hat in sight. I suspect it would be shredded within seconds.
Maybe you have similar heroes who are poised to save your country. I think we all could do with special ones who are beyond reproach and who we can truly believe in. We certainly need a smile at the very least.
Patience needed
Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.
As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.
That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.
Opinions differ on the future. One of his Paediatricians said
“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”
However one of the best clinician I have come across (unusually a caring expert in autism) argued
“He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)
For me this raises 3 fundamental issues
- What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
- As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
- Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.
Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me
“Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”
Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.
Priorities
The U.K. newspaper the Guardian ran an article today on how Special Needs Education is breaking Council budgets. It’s underlying argument is that as special educational needs are growing the Government is simply burying its head in the ground. As our son is one of the 354,000 mentioned in the article it feels very pertinent to what I’ve been waffling on about for months. We live in times when Austerity reigns supreme. Even the Special Education Budget is seen as an increasingly easy target for cuts.
The Government and our soon to be gone PM are very keen to stress that money doesn’t grow on trees. But surely it does. How else can you explain these little facts.
- When the current government failed to secure a majority in Parliament it needed a new friend. Friends don’t come cheap. The Government found an additional £1Billion in funding for Northern Ireland budgets which was enough to buy the support of the DUP party. Basically money appears if it means keeping the PM in a job.
- The Government decided that due to Brexit we needed more Ferry capacity. It unbelievably awarded a £14M contract to a company that had no ferries and had never run shipping before. Basically £14M down the pan.
- £14M wasn’t enough for this Government so they decided to ignore Procurement Rules in the award of the Ferry contract to a company that doesn’t have any ships at all. So they got challenged by another company. To avoid an embarrassing trial the Government paid another £33M out. That’s a lot of money for no Ferries especially when Brexit was delayed so we didn’t need them anyway.
- Not quite finished yet with Ferries. The Government paid just under £1M to have Private Consultants assess the viability of a Ferry Company that had no have Ferries. You couldn’t make this up.
- £67M per year spent on the Royal Family.
- The Government spent £13M on consultants over two months in a failed attempt to get MPs to back the PMs doomed Brexit proposal.
- Over £2B has been spent on planning for a no deal Brexit.
- The Government spent £4M on advertising to try and promote its discredited Universal Credits Policy.
- Every year taxpayers fork out just under £1M for the PM to use the Chequers Country Estate.
- The previous Government cut the very highest tax rate from 50% to 45%. This has cost over £8.5B.
- The Government spent £9M on a leaflet promoting the dangers of Brexit. Now essentially the same Government is promoting the benefits of Brexit.
- Money is tight but the Government found £55Billion to essentially build a vanity high speed train set through some of our countries finest countryside.
- £14Billion to build another runway at Heathrow. Bugger the environmental costs. A policy so mad that even the king of buffoonery Boris Johnson said “I will lie down in front of those bulldozers and stop the construction of that third runway … Heathrow is just undeliverable, and the sooner we face that the sooner our salvation“
- The previous PM wanted his own Air Force One. So we spent £10M on one. The funny thing is that Cameron only got to fly on his plane once before he resigned.
- Although money doesn’t grow on trees money was found to put adverts on vans and in newspapers telling potential illegal immigrants to Go Home. They then found another £200000 to pay for a study to show how good the idea was.
- Every year Taxpayers are paying £3.7M subsidising our MPs and Lords food and drink cost when they are in Parliament. I’m still waiting for my food and drink to be subsidised.
I could go on an on but I hear you cry no more.
So the bottom line is money is available to the few when it’s needed. Sadly that does not apply to the 354,000 kids with recognised special educational needs and the countless thousands who fall through the system.
We live in hope of change. Unfortunately hope or change is not the middle name of the two chaps competing to be the new PM. They live in a different world
- Jeremy Hunt regularly earned dividend of over £900k per year on top of his Cabinet salary. He later sold a company which earned him £15M.
- Boris Bozo Johnson said that his cabinet salary of £141,000 was not enough for him to live on….
So no hope here then. But one day a revolution will come. We will start to get our priorities right and our society will start looking after the many and not the few…
That’s probably got me blacklisted on the American Visa system now and will certainly have pissed off several million in my own country…..
Garibaldi
When I was a kid I loved a Garibaldi biscuit. Not had one in years. Sorry rubbish connection but beyond tired at present.
It’s been one of those days. Constant motion. Housework, Pre School Routine, Work, Dinner, Work. Lots of action, no sitting down yet achieving absolutely nothing. Even the dog walk up the hill lane just seemed to take longer today. The days culmination was forgetting about tomorrow’s school uniform. So panic washing cycle started at 11.30pm. Waiting for it to finish now. Then we are going to crank up the Tumble Dryer to its highest setting – equivalent to splitting the atom. Hoping I will get a semi dry uniform to iron by 2am. It’s been one of those days…..
Anyway back to my rubbish connection.
When we went to see Kiss the support act was a performance painter called David Garibaldi. Have to say he is definitely gifted. Frankly it’s just showing off just a bit too much when you can paint Elton John brilliantly, before a Rocket Man finishes and doing the painting upside down. But seriously the guy is a genius.
“Dad he could do my bedroom like a modern Sistine Chapel during one Spongebob episode. It’s taken you a year and it’s still resembles a building site.”
I bet Garibaldi isn’t trying to paint a masterpiece at 1am while he waits for what’s left of a school uniform to dry. But maybe the secret is to take the painters approach to time management. Pick a song then try to finish the painting job before it finishes. I wonder if that could work with housework and washing.
Eyes wide open
It’s amazing what you find when you open your eyes.
Another application for additional support. This one was a long shot. Additional funding to provide some specialist support in school for our son. Turned down.
Same line. He already has funding (the maximum available with an Education Health Care Plan) which allows him to take up his place in school. The funding goes into the general support budget which funds the school wide teaching assistant system. Plus he’s doing so well without support.
The fight goes on.
Then speaking with his Doctor. Son is now starting to become too old for many of the health programmes focusing on autism.
The fight goes on.
It feels like the agencies have signed up to support our son while he is in school or college up to the age of 25. The agencies provide virtually no support now. They will continue to provide virtually no support up to the age of 25. Then they can officially provide no support after that….
Ultimately the agencies are just following Government policy and funding decisions. The current government sees austerity and cutbacks as essential for health and education. Yet they are happy to provide funding for tax breaks for the better off and bungs to Northern Ireland Unionists to keep themselves in power.
Nothing is going to change any time soon.
So the fight goes on. But one day the government will change and hopefully we will get one which governs with eyes wide open.
Ricky
Meet Ricky the newest member of the gang. He’s made an appearance before when he started burying his nuts in the lawn over winter. But now he has started coming for his lunch. Happily feasting next to the birds. He (or she) will be a welcome friendly face going forward.
We are just over a week from the start of the summer holidays. Six weeks of immersing myself in our son’s world. It truly is a privilege. A wonderful mind trip. Happy parent.
I bumped into a parent from his current school. They have the holiday mapped out. Immediately they break up they are going to a music festival for the first weekend. Then the kid is going on a football course for the first week. Then they fly out for a two week beach holiday in a popular Spanish resort. They come back and then the kid is off camping with the scouts. A couple of trips to fun parks and family barbecues are then followed by a family week in Paris Disney.
Asperger/Autism summer holidays can be very different to this. Ours is. For a start we are limited by finances. Our summer holidays are long periods of house lockdowns briefly punctuated with carefully selected trips to places without crowds. This means early day trips to places like Zoos – trying to cram as much in as soon the venue opens and leaving as soon as the crowds start to build. For his favourite zoo that means arriving at 9am and probably leaving around 10.30am. Trips to the cinema will be to the 8.30am screenings. Locations will be carefully planned so that he feels comfortable there. Walks will be in very remote and largely unvisited areas.
A trip to Switzerland would have been an option (he is comfortable there and the journey is familiar having done it a few times) but we just can’t afford it. Plus he is more comfortable going during quieter periods – April/October. And we haven’t tried it since his mum left us – will it ever feel the same.
So our summer holidays will be quiet and largely cut off from the outside world. That would worry me in the past. The real danger of becoming increasingly introverted over those weeks and losing any social confidence which I had struggled to build up. This year it doesn’t really bother me. Yes I might become more introverted but its not as if I have a full social diary. Introversion and isolation is the new me. I can focus on our son and see what adventures we can weave – I’m sure Ricky will play some part as well.
A Dad trying to cope with the loss of his Partner and becoming a single parent. 