Posted on by bereavedandbeingasingleparent · 85 Comments

Prophecy

Colour slowly returning to the garden. Sadly just in time for the next weather blasting. Just so predictable….

A few years back our son had a wonderful medical expert who did an awful lot for him. Just before retirement I remember the experts prophecy. To paraphrase

Our country’s support for kids like yours is nothing short of a disgrace. Sadly if you think that the support he gets now is patchy and insufficient, well just wait a few years. It’s likely to get very much worse. Maybe when he is 12, most definitely when he is a teenager, the minimal support will dry up. He will get reassessed by clinicians who have no practical experience of your son. They will deem him above the clinical threshold and will turn off the support. Clinical threshold should be renamed budgetary threshold. It’s not a reflection of the clinical position. He will still have severe clinical need for intervention. The support will be removed because as a society we don’t support teenagers and adults on the spectrum. We expect them to fend for themselves. If they don’t fulfil their potential then tough. I’ve seen this happen to virtually every kid I have worked with. If they achieve anything in life it’s just down to themselves and their parents. On top of this the school system just assigns them to the bin. It stinks….

Sadly the prophecy is coming true….

Just before Christmas he was reassessed for one of the support services he receives. The assessment was done by someone who had never met our son. The outcome – the service was withdrawn as he no longer met the clinical requirement.

Today we had a therapy session at the local hospital. It’s a service he has had since he was 7. It’s made some great progress over the years. It’s taken time and many sessions. At the last session his worker agreed on a programme to help with his handwriting, keyboard skills, and areas such as shoelaces/school ties. The programme after that would look at trying to help with coordination specifically aimed at swimming and bike riding. He has significant problems in each of these areas. Well guess what. At today’s session his worker was joined by a senior member of the team. A reassessment was made of his case. After a few practical exercises we were informed that he was now above the support threshold. He was now discharged from the service. They would write to school and give them some suggestions on his future schooling. We were handed a couple of information sheets on handwriting and shoelace tying. We can ask his Paediatrician to review this decision. We are on the waiting list to see a Paediatrician – currently our last appointment was over two years ago.

So we are now down to one service support now. But that is so underfunded. His worker is wonderful but because of workloads she struggles to see him now. Last year we got invites to a couple of group sessions. His last one to one session was back in 2018. Clearly it’s only a matter of time before that last helping hand is removed.

It really feels like that the health service has now dumped our son since he’s a teenager. I guess they argue that it’s an educational problem now. Unfortunately the school system has washed its hands of our son already. Like so many kids the school’s write them off. Label them low attainment. If they get the odd exam certificate in the end then school has achieved its goal. Ticked it’s box on the Government’s school assessment.

So here we are in the brave new world. We are fending for ourselves. Our only support – a few pages of photocopied guidance from a textbook. How can we have got this so wrong. How many thousands and thousands of autistic teenagers and adults are in the position. Some of the statistics on autistic suicide rates, unemployment, depression and poverty are appalling. But society doesn’t care. Our leaders don’t care. That’s a truly sickening thought.

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Dreams pesky dreams

If I was a flower I wonder what dreams I would have.

Before my partner died I would have the occasional dream that I could remember, but not that often. My sleep would be disrupted but usually by our son. Plus back then, when there are two of you can take turns on the sleepless shifts.

Then after my partner died sleep became increasingly disrupted. Son has always had an interesting sleep pattern. Whatever we have tried has never managed to change that. Eventually the health professionals just called it – it is how it is for him, it works for him, so just run with it. Basically his mind and body are too active for sleep anything south of midnight. He will usually fall asleep between midnight and 1am. Then he will sleep until 6am until his mind and body kick into active mode again. When he was younger he would constantly wake during that time, so one of us would need to be with him to get him back to sleep. But as he’s got older he more often than not sleeps through. A couple of times a week he will still wake and I get the night visits. Checking I’m still here, wanting an answer to a question or wanting to tell me a fact.

Dad Harold (that’s Harold II) was not the last english Saxon king. William beat Harold on the 14 October 1066 but wasn’t officially crowned until the 25 December. In theory Edgar Atheling (Edgar II) was king. He had the strongest blood claim to the throne. Night Dad.

But as our son’s sleep has stabilised my dream pattern has increasingly disrupted mine. It takes an age for me to get to sleep then all to quickly a vivid dream wakes me and then that’s usually it for the night – no more sleep.

The dreams have also changed. I have had three distinct dream stages. Each stage has its own unique dream type – each night its the same sort of dream.

The reliving fond memories stage. This was the nicest, yet saddest stage. The dreams would relive completely accurately lovely memories. Maybe a holiday trip, a birthday, an early date with my partner, finding out when we we’re going to be a family….

The bizarre memory stage. Then suddenly the dreams changed. They still were based on fond memories but always morphed in some bizarre way. A dream about a lovely family trip to a petting zoo, but in the dream the cute little animals were replaced by dinosaurs – we still petted them. A dream about sledging with son on one of our few proper snow days. But in the dream the white snow had become pink.

The current dream stage. The weird/unsettling dreams. No more dreams based on real life memories. Just unsettling made up dreams. Last night for example my partner (who was pregnant) and I had gone shopping in this made up out of town shopping complex. We had gone into a huge furnishing store. We found some items we needed and I went looking for a shopping trolley. Couldn’t find any trolleys inside, so I looked out in the car park. Still no trolleys. So I walked across to the next store which was a supermarket (ASDA). They had trolleys but they needed a coin to release them. None of my coins would work. I then couldn’t find our car to get more coins. So I ran down a short slip road to the next group of shops. Here the trolleys were all vandalised. I ran down another slip road to the another shop which was a huge DIY store. They had trolleys but they wouldn’t push correctly. It took all my strength to move them a few inches. Finally I found an electronics shop which had trolleys that worked. But now as hard as I tried I just couldn’t find my way back to the first store with my partner who would be getting increasingly annoyed with me. I was now completely lost and in full panic mode. Then I woke up. Now I was completely unsettled and that was it for sleep. Too tired to read or blog. So all I could manage was to watch crappy TV and listen for the clock to tick round until son woke up.

I look back with fondness at those memory dreams. Even those bizarre Dino type memory dreams. Yes they could be sad but they where a wonderful gateway into the past. But these current dreams I really hate. No sweet memories here just my brain finding new ways to unsettle my soul. Sleep is now something I desperately need, yet I struggle to do it. It is also becoming something which brings me nothing but stress. I hate being stuck in this ever decreasing sleepless circle.

Posted on by bereavedandbeingasingleparent · 71 Comments

Brakes

A stream about 5 miles from our little bungalow. Near the boundary of my current world.

It’s funny as a kid I always thought that my world was a small place. We didn’t have much money so holidays would tend to be just day trips on the train to places like Whitby and Scarborough. If we we’re lucky a school trip would take us maybe 50 miles in land. Dad had a car but it was only used sparingly – just for getting him to work. I remember watching exotic places on the TV and thinking one day I want to see them. I looked at books about mountains and so wanted to see The Eiger, The Matterhorn, K2 and Everest. I always thought that as I got older I would travel more. My world would grow and the world would shrink.

For a time it did workout that way and yes I did get to see The Eiger and The Matterhorn. I visited parts of Europe. I even got to see South Africa.

Then the world shifted again. Autism. Bereavement. Money concerns.

Now I find my world rapidly shrinking again and the world growing ever larger. Increasingly son sees comfort in his own little world. Our house, garden and the landscapes that immediately surround him. Longer travel is so difficult for him. It has to be mapped out and carefully controlled. That’s before we factor in the limiting factors of travel as a single parent and money constraints. My world is shrinking again. Even work has to operate within these constraints. My world has shrunk. One of the few bridges into the wider world is the occasional concert. These still work for our son.

We are due to travel to see The Who play in a couple of weeks. We will have to travel by car as public transport here is minimal and stops by evening. Regardless of its availability son struggles with buses, trains and planes. These are likely to induce panic attacks. So we travel everywhere on foot or by car.

Two weeks ago the car was in for a service. They found problems with the brakes which needed some parts to be replaced. The garage said I was ok to drive it for a couple of weeks until the garage could fix it. So this Monday was supposed to be the repair day. The garage phoned today to apologise. They we’re going to have to cancel the repair for a few weeks. They just can’t get the parts. The Parts Suppliers are out of stock and are waiting for new items to arrive from China. The garage is a national chain and all the branches are out of these parts. Apparently all the other rival garages in the area are in the same boat. So the repair is on hold. The suppliers are hoping to have new stock arrive soon but that may not be until April. So I’ve been told to try and really limit the car use until the parts turn up. My world shrinks further.

So in a mirror image of my childhood – the car will only be used sparingly. Just for the occasional short distance work trip and the school runs. A long distance concert trip is probably not a practical option.

My world has shrunk again but as ever we will make the best of it. Think our carbon footprint. Think more fun at home. Enjoy what we have on our doorstep.

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Sausage Roll

Castle Howard is only a few minutes drive from our house. The photo is Castle Howard not our house. Sadly we don’t go that often now as it’s so expensive. Which is a shame as it’s truly stunning stately home.

Work came to a premature end at 10am this morning. That’s the deal with zero based contracts. Yes they are flexible and can fit round being a single parent but absolutely no guarantee of work. So a deep blue sky beckoned a first run in ages. The plan was to drive home and just run from the bungalow. But without really thinking I pulled over at the next village when I saw an enticing path sign. I thought ‘well lets see where this takes me’. The answer was stunning run which skirted the edge of the Castle Howard estate. All for free.

My trail shoes don’t have much tread left on them so I was taking a bit of a risk running down a steep muddy bank. I lost….. A sudden grip failure resulted in a crunching fall followed by several rolls down the steep slope. All sides completed covered in mud. After a few minutes the mud began to dry in the sun. I now know what it feels like to be a sausage in a sausage roll…..

After the painful and slightly embarrassing slog the run flattened out. The reward was glorious views of Castle Howard and the Estate. I had the trail to myself which gave me time to think. Probably too much time. It’s at times like this that my mind wanders to what has been lost. At least with running I do have a release valve. Just run quicker. It works but wow I’m knackered when I finish.

It was a wonderful run around a stunning track. My partner would have loved it. She would be definitely walking rather than running. I was sad that she never got to see these views. I will just have to look for the both of us. I really hope that works for her.

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Cake test

This was my attempt at baking son’s birthday cake. It’s amazing what heaps of icing can hide. The cake was a bit over baked with a huge volcano like hole at its centre. I plugged the hole with soft sweets and then covered with thick icing. What was left of the sweet packet was scattered on top. I might be onto something here. The soft sweet centre worked brilliantly. As a result the cake was deemed “not too bad at all” which on our sons review scheme equates to just above two Michelin stars. So now that’s got me thinking what other things can I fill the inevitable cake sunken holes with. I’m going for jelly in the next one. I will report back on my test.

On the subject of tests …. ok troops, time to stand by up your beds. Its spelling test time.

School is slipping as we have had only one spelling test this week. So they better make it a doozy.

Imagery

Alliteration

Rhyming

Couplets

Syllables

Stanza

Rhythm

Sonnet

Simile

Metaphor

Hyperbole

Assonance

Personification

Onomatopoeia

Enjambement

Another cracking list of words that will be of great use in son’s future life. My last conversation with school stressed the point

That spelling tests for dyslexic students are not recommended practice. If they have to be used then they should only focus on the most commonly used words.

Good to see the school are sticking to the common words then. I had to look up Enjambement. I was sadly disappointed to find that it wasn’t a Caribbean Cooking term for combining Jackfruit with Jamba Juice. My favourite flying dinosaur (Onomatopoeia) makes a welcome return. Last time I pulled that joke I had a shedload of abuse from my Texan fan club….. For some reason Son can’t say ASSonance without cracking up. Must get to the bottom of that joke.

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Castle

Sheriff Hutton Castle is over 850 years old and was built during the reign of King Stephen. Later Richard III acquired the castle through marriage. He made the castle one of the two sites for his Council of the North. The Council was his method of running the North after he became King of England. It has since fallen into ruin. It’s recently been sold for just over £1Million. It is our local castle.

Seven years ago we nearly bought a house which backed onto this castle. The castle was only 30 paces from the garden. An epic garden view. It was at a time when we we’re going to try for a second child. So we needed a house with an extra bedroom. This house ticked so many boxes. To me being so close to a castle seemed so exciting. However in the end we didn’t buy the house and sadly my partners health soon ruled out another member of our family. Every time I pass the castle my mind wanders off to what might have been.

There where a few reasons why we didn’t move here. One of the main reasons was our son. At that time a carefree, gregarious toddler had quickly transitioned into the world of Aspergers. Suddenly his world was populated with doctors, psychologists and other health professionals. It must have been so scary and disorientating for him. The one place he felt safe was our little bungalow on the hill. The bungalow was all things to him.

His Panic Room

His Safety Zone

His Dream World

An Exclusion Zone for the many who looked at him differently because of one word

His Play Zone

His World

It was the only place he felt comfortable and relaxed. From our experience Aspergers seemed to loosen and destroy all of our sons life foundations. Life became precarious and the slightest disturbance could bring everything crashing down. His little bungalow was one of the few things which was still secure and stable. The last thing he needed was for that to be torn down as well. So we decided to stay.

We are still here in that little bungalow on the hill. It’s still such a safety net for our son. A place he feels secure and at ease in. It still excludes those who discriminate. The garden fences mark the boundaries to his world. His ramparts. In a way it is his very own modern castle.

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Vile Words

Sometimes no extra narrative is needed. But this is why we need to keep spreading the message and fighting for our kids.

This is Sir Oliver Letwin – a former Conservative Minister. A former member of the Government. This is what this bigoted prat had to say on BBC radio today.

“There are so many different ways that these networks could be attacked, either by nature or a terrorist attack, or another country attacking us. Or in fact, just some autistic person or some strange youth sitting in some place in the world who’s connected to our network by the Internet and gets in and does something”

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The road

The road often seems so long and never ending. Somedays it is, especially when your trying to run along it straight into the teeth of a biting north wind. Absolute purgatory. But then other days the road is short and manageable. Even in my rubbish car it only takes a couple of minutes to drive it. It’s good to remind myself this every so often.

In those dreadful early days of being a widow and a single parent the journey in front of me looked so daunting. So beyond me. A road with seemingly no end. I would shake my head and just think – I can’t do this. Yet I still set off down that road. I didn’t want to but I was faced with no choice. I was a parent to a young kid who has just lost his mum. He’s was also trying to get his head round not being able to read and that new word – Aspergers. I owed it to him to at least try. Nobody else would. It was down to me.

He only gets one childhood and it better be as brilliant as is humanly possible.

So I started down that road. I had no idea where the road led to. I was so confused. As a result I was hoping to find a ready made parenting plan – an easy to navigate road map. As hard as I tried I just couldn’t find a map which I could use. I searched everywhere. So many books and articles were scoured over for that magic road map. But in the end it was a futile search. No one is going to do this for me. No easy shortcuts had been forged by others. It was down to me and I needed to own it.

Fast forward to 2020 and I’m still here. Still a widow. Still a single parent. Still slightly confused. Still travelling that road. Still haven’t come across a map. But there is a difference. That road doesn’t quite feel so daunting. It doesn’t feel quite so long now. That’s progress in my book.

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Laughter

Most runs around here end up with one last slog up this winding hill. A number of cycle clubs use it for races. The British Universities use the hill for their national road race championship. The 25% twisting ascent is a real leg sapper.

But on the bright side it’s a rapid, helter skelter of a descent. On one cycle decent I lost control and ended up in the farmers field. Still not as bad as one cyclist you apparently was rescued after being found face first, stuck in the roadside hedge. You could only see his legs sticking out. That would have cracked me up. As Monty Python would sing – Always look on the bright side….

Over the last couple of years I’ve learned the importance of laughter. It really has been a life saver some days. Really dark thoughts have been broken by a random laugh. A few weeks after my partner and my mums funerals I was as low as I have ever been. But a random chance encounter with Python’s Holy Grail movie lifted my spirts. It was bizarrely the scene where Eric Idle was collecting the dead bodies on the cart and John Cleese tries to get rid of a ‘not’ dead old man. It just touched a nerve and I laughed a lot. It just seemed to brake the spell.

Yes laughter breaks the spell. It’s distracts me. In computing terms it seems to reboot my system. The problem is that often when you need that reboot the most. At your lowest ebb. The hardest thing to do is laugh. The mindset is that your not allowed to enjoy a bit of life. Laughing is just not acceptable. Almost as if it makes you a bad person. Really. For me the two of the nest things I’ve learnt about grief

  • It’s really ok to cry AND
  • It’s really ok to laugh as well.

The news is unremittingly grim at present. Nothing like a pandemic to bring out the worst in our leaders, our media and sections of the population. Today the media was full of misinformation and photographs of empty supermarket shelves. Panic buying has started. So with some trepidation I ventured into the supermarket for a bottle of milk and a loaf of bread. What a pleasant surprise to find a well stocked shop. Then one last gift. With a sense of humour the store was running a promotion on Corona Beer. Clearly with shoppers loading up with the stuff that it was selling really well. Certainly better than in some parts of the world. It’s a shame that I’m on the wagon and that I never liked the stuff anyway. But it did get me thinking – maybe the World Health Organisation should continue naming viruses after products. Especially if it leads to heavy discounts. Maybe the next pandemic could be called the Cadbury’s Cream Egg Virus. I look forward to that discount….

Always look on the bright side of life….

Posted on by bereavedandbeingasingleparent · 107 Comments

Don’t mess with the Squirrel

Let’s get the rant quickly out of the way. The UK’s School Minister has opened his mouth again. Remember him. The chap who wants to test kids from the age of 4. The chap who described kids taking time off for bereavement as – an extended holiday. The chap who introduced changes to the teaching of English which severely disadvantaged dyslexic kids – against the advice of health professionals and dyslexia groups. The chap who on several interviews refused to answer any of the questions he was expecting kids to answer. Well now he has told schools and parents what to do in terms of the Coronavirus. Even if the school gets a suspected case then parents should send their kids to school as normal. Schools should remain open. This contrasted with the Chief Medical Officer who yesterday was talking about the potential of closing schools for two months if the virus started to spread in the UK. Well the Schools Minister can take a running jump. He is the last person I would trust my child’s wellbeing with. If it comes to this decision then I will make the call not this over promoted pompous twat. Rant over….

I’ve just been bullied by a squirrel…..

I went out to feed the wildlife in the garden. The usual collection of birds and a squirrel waited not so patiently to be fed. I had a couple of uneaten pancakes to add to the usual menu. As I kneeled down to tear the pancakes up into little pieces the squirrel moved in. He grabbed both pancakes out of my grasp. He wasn’t waiting or sharing these goodies. I did try to have words with the bushy tailed one. But clearly somebody wasn’t listening today. At least somebody likes my pancakes.