Posted on by bereavedandbeingasingleparent · 96 Comments

That’s how it is

Just seems such a waste. Such a beautiful flower and yet it’s in our garden so it only has an audience of two. But that’s how it is.

He is so caring. When his class had the last day in the old school one of the girls cried her eyes out. The only one to go across to her and ask if she was alright was our son. Yet because he is on the spectrum he must be unfeeling and cold…..

He brain is far more powerful than his Old Pops yet somehow I went university and he is seen as being low attainment.

He has a love for scientific enquiry yet that counts for nothing as he can’t accurately hand draw a plant cell structure or spell correctly common science words.

He can create awesome self contained worlds with detailed mythologies, politics and cultures. Yet because he can’t construct a grammatically correct postcard he is written off.

He can forensically debate historical details yet because people assume that he will never read a textbook he is not encouraged to foster that subject love.

The education system has written off his reading as something which won’t develop yet he can read and send texts without help. He is told to just get used to using a reading pen yet today while watching the Justice League he read the sub titles almost perfectly.

He is not part of the in-group of kids who live and breathe football. Yet he can talk for hours about football stats. Relive the sports greatest moments. Can talk for hours about the minutiae of Team setups and tactics.

He can be so relaxed, so astute and so naturally funny. Yet only I see this. It does seem such a waste. But that’s how it is.

Posted on by bereavedandbeingasingleparent · 57 Comments

Hill

I don’t know what it is but I love looking at this one field. It just works for me. It also puzzles me – what is on the other side. I have no idea. One day I will check. Is that the best approach?

During the process of getting a diagnosis for our son he had to undertake a number of tests. He would only do them if I did them as well. So by de facto I was assessed as well.

Dad you do know Aspergers can run in the family. Mum’s side probably has. Your side is not so clear except for one person. You.

When I look back at my childhood I was more relaxed when I was on my own. I would often be found apart from the others in my class. I struggled to get my head round bondage language and emotions. Hated physical contact, hated being crammed so close to others. I made friends as I was good at hiding my anxieties. But I never could quite see the world like my friends did. Often seen as the odd but funny one. I was often quiet. I tried to hide a bad stammer which appeared when I felt uncomfortable. My school reports said ‘very shy’ – no I didn’t want people to hear my faulty speech. Initially slow at reading and with appalling spelling. Accident prone and uncoordinated – yet found ways to be good at sport.

All those probably still apply today. Apart from the physical contact phobia – do love a good hug.

So the tests what did they reveal. I remember a therapist telling me

It’s wonderful how you have failed some tests to reassure your son…

Don’t want to disappoint you but I didn’t have to try to fail the tests. It came all too easily for me. Not all the tests but many I did struggle with. I mentioned this to our son’s Clinician. When I told her which tests and how I struggled her take was that it would probably have been enough to trigger a diagnosis. She asked if I wanted to go onto the waiting list for Aspergers Assessment.

But that’s as far as it went. No interest in finding out one way or the other. Waste of valuable NHS resources. Not going to he,p me now. As son would say it’s just who I am. But maybe this is the reason that I have been able to get my head round Aspergers. Partner spotted the Aspergers with our son first but admitted I got my head round it instantly. She struggled. If it allows me to better understand the issues our son faces. That’s good enough for me.

We’ve talked about what’s over the hill. Son think it’s a panoramic view of the Vale. I thinks it the Yorkshire Area 31. A place housing our alien rhubarb technology.

Posted on by bereavedandbeingasingleparent · 88 Comments

The experts

We had an appointment today. Sat in the waiting room with three other families. All three with kids younger than our son. They were happily talking, running around and playing with the provided games. Son sat in the corner basically trying to hide behind a potted plant. This continued up to and during the appointment. Back in the car driving home he was back to smiling and talking about a multitude of subjects.

Since Aspergers became our byword this type of behaviour is common. I remember a Clinical Psychologist saying that it’s likely to be replicated throughout his life. Technically Aspergers is called a life long condition.

Son puts it so much better.

It’s just me. Its who I am.

Yet I had read a blog the other day which basically said Aspergers could be programmed out of people through repetition. It was an illness and as such could be eradicated. The cure…..

One of the subjects we talked about was. How does a Cow see itself. Not as a cow as that is our interpretation. It’s a great question to play with as we will never know the answer. As a result son couldn’t disprove my thesis that a cow sees itself as an actor in a Madagascar movie. Son informed me that about 63% of the worlds cattle population are from India, Brazil and China. He also allowed my random fact that the nosiest cows are from Switzerland – those beautiful cow bells.

Cows have 22000 genes with about 80% of them shared with humans.

I remember reading that cows like to stand either facing towards or away from the magnetic poles.

Apparently in Cow News – a cow walked through a classroom in India today.

Anyway after much deliberation son answered the cow question.

Should really ask a cow about that.

But that’s the secret. Too many humans make lots of assumptions and then answer questions they are not best qualified to answer. So when we talk about Aspergers maybe we should first ask the experts about it. Not the experts but the real EXPERTS. The kids and the adults with Aspergers.

Posted on by bereavedandbeingasingleparent · 85 Comments

Lonely

Two days ago it was 34C and cloudless. Today we are back to jumpers, rain and mist. Again the weather matches my mood.

Today I am missing my partner more than usual. Maybe it’s because we are starting to approach the fateful anniversary. Maybe it’s the weather. Maybe it’s 2 hours sleep last night. One thing it is most definitely not to do with is our son. As ever he is the shining light. The only thing that keeps me going.

So as he is watching ScoobyDoo and the Witch’s Ghost my mind is wandering. Not only am I missing her so much there is something else. I am still enjoying parenting today but I’m not enjoying being a single parent today. Does that make sense?

  • Nobody is there to tell you that are doing some parenting thing right or wrong.
  • Nobody is there to give you a hug.
  • Nobody is there to give you that knowing smile.
  • After son goes to bed nobody to snuggle up with to watch a movie.
  • Nobody is there to share a quiet moment with.
  • Nobody is there is ever to make you a cup of coffee.
  • Nobody to cover while you pop out for that bottle of milk or a bag of flour which you have just run out of.
  • Nobody to calm me down when I am about to throttle the hoover as the belt snaps again.
  • No more holding hands.
  • Nobody to share that special moment together when our son does something magical.

Don’t get me wrong parenting is still the most rewarding thing I will ever do. Maybe I need to write a post about the upside. It is the best gig in the world. Just somedays it’s a bit tougher than usual and certainly more lonely than I envisioned all those years ago.

Posted on by bereavedandbeingasingleparent · 75 Comments

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.

Posted on by bereavedandbeingasingleparent · 90 Comments

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.

  • Posted on by bereavedandbeingasingleparent · 67 Comments

    Wow he’s got a funny shirt on

    Dad are you going out in that T-shirt. I wouldn’t be seen in that.

    The look the cow gave me I think indicated a similar interest in my attire. What is so wrong with a bright yellow T-shirt which has a photo of a reasonably well known TV personality on the front.

    Don’t see a problem myself…..

    On the walk we bumped into a family coming the other way. I had a quick chat with them but quickly realised son had pulled his hood over his head and was basically hiding behind a bush. So we headed off promptly. Social interaction just doesn’t come easily for him. Unplanned encounters just freak him out especially if they involve other kids. He hates the thought that people are looking at him. He hates having to make eye contact. He is never sure how close he should stand. He gets anxious when he has to stand still. He is convinced that only a few people get what he’s talking about.

    I could tell this encounter had bothered him. Possibly he was a little embarrassed. He has spoken in the past about being a little ashamed that he could not handle chance meetings more confidently. All you can do is reassure him and tell him to be just himself. Being himself is just perfect. Counselling was having a bit of a positive impact on his confidence but that has dried up now. We work on breathing and anxiety control techniques. Occasionally I try to get him into carefully controlled new situations. The Holy Grail would be a club in one of his interests areas.

    Hopefully one day he will realise that most of us are like this somedays. It’s called being human. But it’s now time to get him smiling.

    “I hadn’t realised my shirt was so embarrassing that you didn’t want to be seen with me. Clearly it’s not a cool look. Good job they didn’t see my Peppa Pig pants”

    Tell me you haven’t.

    I think my smile gave the fib away and he started laughing.

    Do you think they noticed anything unusual about me.

    No too busy thinking what a pillock your Dad looked like. Shall we go home and see if we can find a couple of cider ice lollies.

    I suspect we will be on lockdown at home for a while now. That’s cool. It’s what he probably needs at the moment. And anyway who needs the outside world. We have a trampoline, we have a football goal, we have a DVD player, we have a Peppa Pig DVD (maybe scrap that one), we have jelly and we have our imaginations. What more do we need.

    Posted on by bereavedandbeingasingleparent · 96 Comments

    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…..

    Posted on by bereavedandbeingasingleparent · 54 Comments

    Pranked again

    Absolutely shattered. Tank empty, operating on fumes. Sleep walking. Zonked out. Giving Zombies a bad name. Too tired to sleep. Insomnia. Whatever you call it, it’s not a good place to be. Too many of us suffer from this. So much for progress.

    Last night was a decent one really in the scheme of things. Three hours sleep. But just not enough. You know it’s going to be a long day when you go to make a wake me up coffee only to find when you sit down that you had already made one only a couple minutes ago. At least back to back coffees was a nice indulgence.

    Thankfully I was alone at work. Not sure I could have managed conversation and spreadsheets. Today the spreadsheets got the best of me anyway. Nothing like looking at row after row of numbers to help wake you up – NOT.

    One thing is clear – my tiredness makes me a sitting duck to stupidity. Driving back from work today I picked up our son from school. Soon the tiredness really started to catch up with me. While driving I fumbled around next to me for anything sweet and sugary. Unfortunately I completely forgot that I had not yet disposed of my son’s ear plugs from Kiss. Repeating the disaster from last year I again sampled the taste delights of used earplugs.

    I was that tired I didn’t initially realise the humiliation. Just chomping away, just marvellous. The first indication was the hysterical laughter coming from next to me.

    I secretly hoped you would do that again. You are often so predictable. So predictable I actually cleaned them first. See I’m nice that way.

    Very kind of him.

    Later I took the dog for a walk. No that’s wrong. This evening the dog took me for a walk. I was definitely in autopilot mode. We ended up in a random, new field. At least it was beautiful. I could happily have crashed here for the night. Not sure the farmer would have been that impressed with the sleeping trespasser. It took me a while to figure out how to get back home.

    Anyway I’m back now. Hoping for maybe 4 hours tonight. That would be nice but I’m not holding my breathe. I will take any sleep, any at all.

    Posted on by bereavedandbeingasingleparent · 53 Comments

    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.