Posted on by bereavedandbeingasingleparent · 138 Comments

I am not a widow

Bereavement is one of the most intense and horrible experiences a person will ever go through. It’s sharp prickles and thorns grab hold of you. It scars you. So how can you ever forget it’s happened.

I had stopped off at the local store for food for tonight. Son is easy – just look for any food that starts with an S and ends with ausages…. Then fill the plate with tomatoes, carrots and bell peppers. I will look longingly at the cakes then eventually go for soup. Oh look they have some giant jacket potatoes I can get them for my partner. Where’s the cheese to go with them. No prizes for spotting the deliberate mistake.

It wasn’t until I was focusing on finding a mild cheddar that the brain finally kicked into gear. Oh bugger. For a few glorious seconds I was not bereaved. Not a widow. Then that sinking feeling. That awful feeling in my tummy. Completely disoriented trying to process two completely different places which are three years apart within a few seconds. Maybe this is what Time Travel will feel like.

Not a widow.

According to the UK Government I’m actually not a widow. Officially you can only be a widow if you are married in a manner recognised by our beloved rulers. We were a couple for 20 years. Now approaching 23 years…. The plan was always to get married but we had plenty of time to sort that out. Then we became a family. Then Aspergers entered our life’s. Again marriage was put on the back burner as we had something far more important to focus on. Then time ran out.

So since we were not married I’m not supposed to call myself a widow. The Government is not stupid. It’s a money thing. Death benefits are aimed at easing some of the initial financial pressures which will hit when a partner dies. These benefits need to be restricted so we have a very selective definition. If you are not defined as being officially married then it’s zero help for you. Your not a widow. It’s not the denial of benefits which annoys me it’s that somehow that unmarried bereavement is officially seen as less important. Not an issue. I remember talking to a man whose male partner had died. For years they were unable to get married because of the law. That has now changed. The irony was that it was done by a Conservative PM who needed help from the opposition as many of his own party voted against the change. Five of the current Government voted against same sex marriage. This wonderful couple never got married after the law changed in 2013. The man said

“All I wanted to do was call myself a widow and get on with grieving. But according to the Government I am not a widow.“

We agreed an appropriate response. Bugger off. We don’t care what others may think because in our eyes we are widows.

So I may briefly forget that all this bad stuff has happened. But sadly it has. So yesterday, today, tomorrow and going forward I AM A WIDOW. Interestingly my spell checker is desperate to change widow to window. So to keep it happy I AM A WINDOW. Now that opens up a whole new philosophical blog and probably makes a great Prog Rock Album Title. On that thought it’s time to draw the blinds down and go to bed.

I know that I will miss her tonight.

Posted on by bereavedandbeingasingleparent · 83 Comments

The Poorly Car Run

There is a run I do all too frequently. It’s a lovely run. It’s particularly lovely as it’s flat. But it’s a few miles away from my usual haunts. The run starts and ends at the garage. You see it’s a run which happens when my car is poorly. Today it was the tyres. So off the car went to the garage. So off I went on my Poorly Car Run. Nothing was than sitting in a garage waiting area reading about cars I can’t afford.

The run closely follows one of our larger and most beautiful rivers. The Ouse. As it’s a river that regularly floods you can see the river depth marker. Today it is quite high but thankfully below flooding levels. It did flood a few weeks ago and in the woods you can see the remnants of those high waters.

If I wasn’t about to be hammered financially by the Garage this run would be a truly stunning experience.

The run crosses the flood plains. Today it’s dry but when it floods here can be under 3ft of water. Cold Dark Yorkshire water.

It’s sad that it takes a Poorly Car to bring me here.

So the car has been returned. Monopoly money has been handed over to the Garage. It was a shorts run so my legs got well and truly muddy. Can’t imagine what a dry run feels like. So it was back to work but this muppet had forgotten a change of clothing. Work, autumn, shorts and dirty legs is not a great combo. Luckily it was a solo office stint today.

Few hours later it’s back to the latest school soap story. Another subject test sat without any reading help, no reading pen and no additional time. Even the questions are worded in such a way to make it harder for kids with Aspergers. Set up to fail. Set up to justify the schools assessment of low attainment. I really need another run to release the anger. Anger at the School. Anger at the Council. Anger at me. Anger at the Government. Above all anger at those who will flock in their millions to vote for this Government. A Government for the few.

Maybe tomorrow I will return to the Poorly Car Run. But hopefully it will be the ‘Nothing to do with the car, here out of choice to heal my soul Run’.

Posted on by bereavedandbeingasingleparent · 91 Comments

When diplomacy fails.

A largely stress free week for our son. It’s strange how these always coincide with times away from school. How can we have got education so badly wrong for so many kids. So many great teachers yet so many unhappy and unfulfilled children.

Our son likes lists. It reflects how is mind works. They are honest, raw and unfiltered.

Dad I have a top ten list of what I am looking forward to and not looking forward to with this school term

  • Being treated like I’m not allowed to understand stuff. I’m low attainment so I am supposed to act like it. Kids who get lower marks than me, who don’t answer as many questions are in classes above me.
  • Having to put my hand up for help. I have an invisible disability which school doesn’t want to see. So I don’t get any help. No help at all.
  • Never getting a chance to shine.
  • Having to do tests which are made to make me fail.
  • Completely pointless homework. It’s just testing your handwriting.
  • Too much noise. Too many people.
  • Being in a class with so many kids who don’t want to be there so they are naughty. Because I’m in the bottom class I’m supposed to be naughty.
  • Having to wear a uniform which is so uncomfortable and feels awful.
  • It’s never fun. Just rules and avoiding being given negatives.
  • At least it’s not an 8, 9 or 10 week school term.

So in a few hours it starts again. I will repeatedly bang my head on an unmoving brick wall as school and the local council won’t shift. They make me sound like that annoying parent who just will not see the clear logic of the situation. How dare I question the system.

All I can do is keep being there for our son. But maybe there is something else. Let’s really be that annoying pushy parent. Clearly working WITH school and the authorities doesn’t work. What has it produced. A kid stuck in bottom class getting absolutely no extra help at all.

Autism – nothing

Dyspraxia – nothing

Even the little bit of help he received with Dyslexia has been removed

Diplomacy has failed. Working with the authorities has failed. Maybe it’s time to fight them.

Posted on by bereavedandbeingasingleparent · 65 Comments

Come on it’s Friday

So like the weather we crash into the weekend. This photo was taken minutes before the heavy rain rushed in. It’s time to batten down the hatches for 24 hours.

For 10 brief minutes a delightful dry run in sublime autumnal colours. What followed was a long and protracted slog through a mud bath and driving rain. One step forward and two back. Seriously doubting if I could make the climbs which had been done countless times before. Soul destroying. No fun anymore just hard labour. Frigid isolation in this hostile environment. Doubting my sanity. What am I doing here.

It’s been a perfect microcosm of this week.

A week which has rapidly gone downhill. A long hard slog giving my soul a good kicking. Leaving my mojo and my confidence in tatters. Almost complete social isolation. Never ending pain from dental work. Failure to find solutions to home, school and work problems. Error strewn days. The house is filled with echoes of the past. Even blogging has been harder than usual. The words seem to be failing me. Three draft posts on Aspergers and one on Dyslexia deleted. Just not good enough. Not sure I trust myself enough to venture there. But then life interrupts my meltdown.

We have crashed into Friday. It’s also the start of the half term week holidays. It’s Halloween week. Remember the number one priority. The only one that matters in the end.

Give son the best childhood possible.

So it’s time to put my game face on. Work can wait until son has gone to bed. Halloween gives endless scope for creative fun. My problems will be pushed into the background by boundless youthful energy released by the school gates closing. I’m sure they will be back but just not this week. That’s not allowed.

Only one possible song to leave you with. Mr Alice Cooper and Schools Out.

Schools Out – Live

Posted on by bereavedandbeingasingleparent · 54 Comments

ADHD and Aspergers

Beckies Mental Mess this week has been doing a great job of raising awareness about (ADHD) Attention Deficit Hyperactive Disorder. I’ve just read Rory’s words which explain so well what it’s like to live with ADHD.

From here in this quiet part of Yorkshire ADHD is very much part of our life. It’s now officially part of our sons diagnosis. But it feels very much like a junior version. During the long and ever so frustrating diagnostic process which he went through ADHD was an after thought. It was missed. Never mentioned. Everything was lumped into Aspergers and Dyspraxia.

Then our Paediatrician changed. In his first meeting with our Son he genuinely seemed surprised that he could find no mention of ADHD on the records. A few weeks later it was added to the diagnosis. Why was it missed?

We where made aware that Aspergers in most cases goes hand in hand with other conditions. Everything seems to merge together to give a unique set of symptoms and personality traits. It is often difficult to unpick the individual conditions. Generally Aspergers and Autism are just used as overriding terms to cover a wide and complex set of interrelated issues. In our sons case ADHD was just missed. A specialist went through the original symptoms list. Of the 16 original listed symptoms which were defined as Aspergers related 7 were later changed to ADHD.

As soon as ADHD was on the medical record we were offered medication. Interestingly although our Sons the symptoms had not changed at all suddenly the addition of four letters prompted the option of drugs. We declined. Or should I say Son declined. In his words

ADHD hasn’t changed me. I’m still the same person with Aspergers. It’s just who I am.

Since we declined medication ADHD has never been specifically mentioned again by our Doctors. They have continued to offer behavioural therapy to try and ease the young Aspergers kid into this strange old world. Due to Government cut backs the therapy is becoming increasingly sporadic. Once someone gets past a certain age the health support basically dries up. But at least something happened. From an Education point of view basically no school interventions have occurred. No assessment of educational impact has been carried out. It’s the standard education package for all regardless of any specific needs. It’s so much easier to bracket individual kids as low attainment.

This is the shocking fact in education today. Certainly here in England. Specific educational help to those with a learning disability – some prefer to call it a learning disadvantage – is denied to too many kids in our society. Effectively they are seen as an expensive drain on resources. So much easier to write them off. How do we explain that to our kids. How as a society have we got education so wrong. We need to keep shouting as one day those in charge will listen.

Posted on by bereavedandbeingasingleparent · 51 Comments

Red Sky in the morning….

Red Sky at night …. fisherman’s delight. Red Sky in the morning …. fisherman’s warning.

Yes it works.

A routine dental appointment ended with me trying to stem blood from the mouth for 4 hours. That’s a good start. Especially as I’m one of those odd souls who is fine with blood as long as it’s not mine….

Then school struck again….

Son had been looking forward to getting his school award from the celebration evening. That’s all changed now.

I don’t want to go. I REALLY don’t want to go. Turns out it’s not a party after all. Everyone getting an award has to go on stage and then give a little speech to the crowd. Going to be at least 100 parents sat in the audience. We have to practice the speech tomorrow. When I told the teacher about my Aspergers she said ‘it would be good for me'”

So we have gone from a boost to self confidence to meltdown. Doesn’t help when the kids have been told that they are representing the school so they need to be in full uniform and speak with a loud clear voice. Speaking to a large audience is a challenge for anyone. For a kid with Aspergers it’s a nightmare. Room full of strangers, no where to hide, all those eyes on you. One final twist is that the kids can take notes on stage to read from – well that’s bloody helpful when your dyslexic. It’s just not right. AGAIN.

So we have agreed that son will ask if he can get his award without going to the event. If he has to go then he is going to decline the award. If that’s the case then I’m sure a Dad , Son, Cat, Dog and Gerbils can come up with our own FUN awards night. The magic word being FUN.

Posted on by bereavedandbeingasingleparent · 89 Comments

The Golden Ticket

It’s amazing what you come across on a daily basis. You get good discoveries that just make you go ‘wow’. The ones you can look at for ages and get a sense of wonder.

Then you get other discoveries which make you go ‘wow’ for entirely different reasons.

Today I came across a headline in one of our so called better newspaper – The Times.

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“Pupils lose out as £400m schools funding diverted to special needs

Children have been losing out because millions of pounds earmarked for their education has been siphoned off to pay for special needs education, an investigation by The Times has found.

A surge in pupils categorised as having special needs has led schools to lay off staff, increase class sizes and cut back on subjects as councils raid mainstream education budgets to fund support for them.

One headteacher said that the funding reforms introduced in 2014 created a new education, health and care plans that were seen by some parents as golden tickets”

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Don’t try to read the article as you have to pay Murdock for the pleasure. No free news here. Where do we start with this article from the Rupert Murdock stable.

  • Am I missing the point here but surely SEND (Special Educational Needs and Disability) kids are pupils as well. My son is a pupil surely. Not according to this newspaper. Clearly The Times would like to scrap inclusion and go back to the good old days where too many kids where denied the opportunity of mainstream education. The Times journalists have an underlying principle to most of its commentaries. Well if I don’t need that support so why should we be paying for it.
  • This article is likely to cause some parents to start resenting and blaming SEND kids for school problems. It’s pouring fuel on the fire of resentment and bullying. Basically what this article is saying is the those SEND kids are robbing Normal kids. It is deeply irresponsible and distasteful journalism.
  • The article doesn’t mention the 1500 SEND kids who are unable to find a mainstream school that will accept them. But it according to this journalist – that doesn’t matter as they are not pupils.
  • Blaming SEND kids for the £400m short fall in school budgets is lamentable. Clearly according to The Times this countries crisis in class sizes and falling teacher numbers is purely down to SEN kids. Let’s not mention that school budgets have been severely squeezed as a directly consequence of Government funding cuts. Let’s not mention that this Government introduced a new assessment system but refused to fund that change, That’s the very Government this newspaper supports whole heartedly.
  • This country has had a crisis in SEND school funding for years. It is chronically underfunded, it has always been chronically underfunded. Recently it has been subject to further Government cuts. No mention of that then.
  • A surge in pupils categorised as having special needs. It makes it sound as if suddenly parents are inventing SEND symptoms. This country has an estimated 350000 kids with a learning disability. Most experts say this is a fraction of the actual number. So many kids go through education without having a learning disability diagnosed. For too many years we have failed to address this educational crisis. This is going to get worse as a direct consequence of Government Policy as the criteria for SEND diagnosis is becoming stricter – purely to save money and not based on any health grounds. This is at the same time that funding cuts are resulting in longer wait times for an actual diagnosis to take place.
  • Finally ‘a golden ticket’. Really. In our case it’s the reverse of the article. The funding which has been awarded to our son for his learning disabilities is being used to part fund Teaching Assistant support for the whole school. The article also fails to reference that most SEND parents are already paying for additional care and educational support. This so called Golden Ticket only covers a fraction of the true cost of support.

Once again journalism gives us an insight into the deep rooted problems we have in society. The media reflects the current views of our so called Governments. It shows how far we have to go. How difficult this fight is going to be. I will leave the last word to my old Dad. He would call The Times ‘excellent toilet paper’. Thats all its good for.

Posted on by bereavedandbeingasingleparent · 60 Comments

Not Great anymore

Donald Trumps Wall appears to have started in Yorkshire. Here it’s probably to separate the privileged few from the many.

In my country professions like Teaching, Policing, Nursing, Clinical Specialties once we’re highly respected. This respect was reflected in pay and pensions. Unfortunately times have changed. Or should I say Government Priorities have changed. The argument was that low taxes was the new king. Low taxes on the rich and the money generators started to dictate thinking. The Government started to pick fights with various professions. A deliberate attempt was made to erode public confidence in areas like teaching, health and policing. Then the money generators messed up and we had the financial crisis. Suddenly austerity was needed. But again it was austerity for the many while protecting the few. So the Many and the Public Sector took the hit.

Government introduced competition into all areas. Suddenly contracts were awarded on best value for money. Best value rapidly became defined as the cheapest. As a result the workload on services increased. Quality levels dropped. Providers repeatedly changed. Unfortunately on top of this the pay and pensions of hard working professionals were also squeezed.

When people find their wages and pensions squeezed three things can happen

  • They buckle down for less money but their standard of living is eroded,
  • They become disillusioned,
  • They leave the job.

The Government trots out the argument about the cosy public sector life. The country will be better when everyone works in the good old private sector. Let’s not forget that our Prime Minister said of his own position

‘My Cabinet Ministers salary of £141,000 is not enough for me to live on’

When he said those wise words he was living in his rent free £20M Ministerial Mansion…. one rule for the few and a completely different rule for the rest of us.

A kid with Autism needs above all stability. Continuity in care. Trust is a commodity which takes along time to develop. But those key qualities have been destroyed by Government Policy. This year every single Teacher and Teaching Assistant changed for our Son. We have had to start again trying to build up the so important knowledge base of his particular educational needs. His Paediatric Care Provider has changed and we wait for his new clinicians. Wait is the buzz word. Appointments have gone from 4 times a year to twice a year to once a year. Not sure what the definition for a Year is. We recently received a letter saying that due to the change of provider the next appointment will be significantly delayed. He has had the same Physio for 4 years. But she quit her role. Then the next Physio left after one session. Another Physio then left before the first session. Currently we are waiting another a Physio to be appointed. He had access to a brilliant Clinical Psychologist but she retired and was never replaced. He started work with a Speech Expert but after 2 months she left the profession and the service was cut. He started a programme to work on his optical muscles but the service was cancelled with responsibility passed over to Education. Education refuses to provide that programme. I could go on…

So while our PM moans about his falling living standards the many are picking up the pieces. That’s modern Britain. It’s not Great Britain anymore. It’s certainly not great if you are not one of the Few. And it’s certainly not Great if you are a kid with Autism.

Posted on by bereavedandbeingasingleparent · 46 Comments

Sensory overload

There is a scene from the 2009 Sherlock Holmes movie. Sherlock is in the restaurant waiting for Watson and his fiancée. You see him people watching. But quickly the noise and the images overwhelm him and he closes his eyes to shut out the world. Too much for him. Sensory overload.

It’s one of the few times I’ve seen this depicted on screen. It’s a problem for so many in our society. Yet it’s an often overlooked element of autism.

Imagine every time you go shopping, or sit in a classroom, or walk in a busy street or sit on an aeroplane or cross the road …. you get hit with this sensory overload. Too many different noises, too many images, too many smells, just too many sensations. Your brain just can’t process them. It can cause anxiety, confusion, anger, blurred vision, a meltdown or it may just hurt a lot.

Son has suffered with this. I’ve suffered with this.

Sometimes it’s easy to spot those potential sensory vortexes. Places with lots of people in a confined space. Various noise sources. Complex lighting. But often it can be more subtle situations which can produce the dreaded vortex.

  • Bright colours and certain patterns. The wrong type of wallpaper. A vivid unusual designed piece of clothing.
  • Where you try and process a number of facial expressions or different types of body language at the same time. A school corridor.
  • An unusual or striking taste sensation.
  • An unpleasant touch sensation. The wrong type of sock or glove. With me it’s often the feel of cold metal.
  • Trying to listen to a conversation where a number of people are trying to talk at the same time.

Over time you learn which environments will cause the issues and you start to avoid them. That’s potentially one of the reasons some with autism seek isolation and a private lifestyle.

Our son had started to develop his own defence strategies. One of his most effective ones is dreaming. When the environmental factors start to become unpleasant or unsettling he will often dream. Create a world he can fully control. This helps him shut out many of sensory inputs trying to overload him. You will often see him flapping or stimming during this process. He doesn’t completely shut out the entire world. He can keep track of certain inputs. You will see him dreaming but at the same time he is scanning a conversation or a teacher talking. As a kid I would do something similar when the anxiety started to kick in. Suddenly you feel your back in control again. Unfortunately I was not as good at keeping track of what the teacher was saying – my school reports often mentioned I was a day dreamer and needed to try harder.

Unfortunately as a society we are just not geared up to understand these issues. If you don’t conform to the required standards then you are labelled different. A problem. Most schools give little thought to how they design a classroom and no thought to what goes on the walls. But this can have such a huge impact. A psychologist told me this true story.

A young girl struggled to concentrate in the classroom. She was unable to read at school or in the home. She was written off as low attainment with behavioural issues. Then she was referred to a specialist who asked school to try and teach her in a different location with plain walls. The only room available was a little empty storage room under the stairs. Unbelievably the girl suddenly started to read in the store room.

The problem was that the classroom had a bright patterned wall which overloaded the girls senses. Every room in her home had complex patterned wallpaper. Quickly her parents redecorated the house with one colour paint. Unfortunately her school did not change the classroom so the girl would go to read in the storeroom.

We are seeing progress. For example some stores are starting to run autism friendly shopping slots. We went to one. The shop had turned down the lighting. Switched off the PA and music. Staff wore white shirts. Some of the bright coloured walls were covered over. The store controlled how many people entered the store. It worked and made such a difference.

As a society we have failed too many for far too long. We need to stop being so judgemental about those who don’t fit into the narrow accepted standards. We also need to have a long hard look at how we design our public buildings and homes. Let’s start to make a difference.

Posted on by bereavedandbeingasingleparent · 69 Comments

Unsettling

It’s been a seriously grey day. Heavy rain due within a few hours. When it’s like this you can’t see where the road ends up. You end of questioning your judgement. On your own it can be deeply unsettling.

Unsettling is a term I’ve become used to over the last 3 years. When my partner left this world it was a massive shock to my system (understatement of the year). For years I had got used to that wise voice guiding me through the world. The wise guide on life, on parenting, on everything. Suddenly life was uncertain. Now I was map reading on my own. Trying to navigate life and Aspergers felt like walking an increasingly thin tight rope without a safety net. Initially my approach was trying to make decisions that I thought my partner would make. Never going to work. We were different people with different takes on life. It was down to me to own this. Take responsibility. But it’s easier said that done.

Three years later it’s still easier said that done. Grief tries to rob you of your confidence and self esteem at a time when you are your lowest ebb. You have probably just lost your guiding light. Everything is stacked against you.

So again this weekend another crisis of confidence. Been many of these. Am I handling the school situation correctly. Should I be more forceful? An I being to pushy? Am I getting this badly wrong like most things. How can I be trusted with this when I can’t sort my own life out. Basically I’m out of my depth here. It’s a deeply unsettling feeling which sadly is not restricted to me. Too many live with this. In my case this leads to an initial overthinking of the situation, then the mind keeps focusing on the negatives (the possible ways I could mess this up), next comes the crisis of confidence which leads to a spell of depression. Well at least I’m predictable.

But the bottom line is that it IS DOWN TO ME. No one else is here. So I might think that I’m the wrong person to do this but I am the ONLY person available to do this. So it’s time to just try to keep moving forward. Move forward even though the path has disappeared. Hoping that one day the fog will clear. Then is the time to judge who bad my judgement has been.