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Waiting

Every morning we get a scene from Hitchcock’s Birds. Hordes of feathered friends waiting for the me to get my act together. Come on it’s about time we got breakfast. Just remember what happened in The Birds. No cute Angry Birds here….

We watched Angry Birds 2 a few nights back. It’s very funny. Red and Big Terrence are my new role models. The Birds in the Hitchcock movie are just a bit too Deadpool for my liking.

Everyday the garden birds wait and every day it’s worth it. Free, easy and safe food within feet of their nests. So sometimes waiting is worth it.

We finally managed to get our sons Education and Health Care Plan approved a few months after WE lost his mum. I remember a few parents saying well that’s the job done, your quids in now, it’s top class education for your son now. You could feel the sarcasm dripping off the words. Many parents buy into the idea spread by the media that kids with learning disabilities are taking money off their kids education. Schools are short of money because of these privileged kids. And anyway what’s the point – they are just low attainment. So undeserving. Just give the money to the normal kids…..

Welcome to modern, inclusive, caring Britain…..

Thankfully I didn’t assume it was job done. Now the real battle had begun. Trying to get any meaningful support from our factory farming education system. In practice the small level of funding nominally provided to our son effectively bought him a place in a secondary school. Nothing else. The money is put into the school budget for general classroom Teaching Assistants. These Teaching Assistants then are a resource for ALL kids in the class. The Teaching Assistants are not trained in learning disabilities. The school does have one who has experience in the area yet she has never spent anytime with our son. The school does not provide any additional help to kids like our son. It so much easier to label the kids low attainment and do nothing. So we get into a never ending cycle. The media vilify kids with learning disabilities. The government never contradicts these miss truths and the schools continue to do provide any support. The kids fall further behind. The parents pull their hair out.

So we are still waiting. Still waiting for progress. Still fighting battles. Still listening to the campaign of hate promoted by the media. Trying to get any help which might give our kids a chance. Not asking for special treatment. Just an opportunity for a decent education. So many kids are suffering in silence.

Still waiting. But there is now a sobering thought. A thought to take into 2020. Many of the current failings with the school system can be traced directly back to government policy and educational dogma. Ten years of taking schools back to traditional teaching practices. Back to Victorian values. Back to a time of unmitigated suffering for any child not fitting the expected mould. NOW we have 5 more years of this Government. A government proposing an even more stringent traditional approach. But here’s the rub. In 5 years son will be leaving secondary education.

We wait. So we probably will be still waiting in 5 years.

So as we move into 2020 the conclusion is that the school system will will not help kids like our son for many years. It will never help our son. It has and will continue to fail him until he leaves. I’m still trying to get my head round this. We will keep fighting but with little chance of any progress. So we are now in Plan B zone. What is Plan B? I’m not sure yet.

Sometimes waiting is not worth it.

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Names on Christmas Eve

Christmas Eve has been very damp and exceptionally grey. No colour at all. So it called for some colour from a couple of weeks ago. Today this is as colourful as it gets. I can’t think of a name for this at the moment.

As I’ve got older I’ve become more used to dealing with the inevitable life curveballs. But not completely. The dreaded demon curveball still gets through.

Dad if I had been a girl what would you and mum have called me.

I couldn’t remember and that’s a great start to 24th December. My defence is that we found out very early on in the pregnancy that it was boy names only. But I still should remember that. Those fun brainstorming seasons for two unprepared newbie parents in waiting. But nothing. It felt like I had let down our son and lost another important link with my partner. It hurt. It hurt like mad. Yes you can hurt at this time of year. Sadly so many do. Sending everyone of you a hug.

To try and clear my head I went outside to do my odd outside thing. Push a wheelbarrow around the garden a few times. It’s hard work but that’s the point. In the middle of the garden was a stray Santa’s Hat – presumably courtesy of Captain Chaos. So as the effort started to do its job I donned the slightly soggy hat. Wheelbarrowing in the rain. Like to see Gene Kelly’s face if that was the song he was given all those years ago to dance to. Wheelbarrowing in the rain did its job. Mind reset. I have one job and that is to make our son happy. Make him happy this Christmas. Need to get back to my A Game.

“Son when was the last time you had whip cream direct from the canister into the mouth”

Never Dad.

“Well you are now”

So that’s what we did. Soon this was escalated to shaving foam covering my entire face. It kinda suited me. Still no George Clooney but a vast improvement. A look all the more better for the sound of laughter filling the house.

Dad do you fancy a first to hit the crossbar challenge.

Followed a few minutes later with

Dad you do know it’s first to kick the ball onto the goal crossbar not first to repeatedly kick the ball into next doors garden challenge

As I spent a quite a bit of time retrieving the football from next doors garden I got to spend a bit of time noticing how a garden should look like. Very neat and tidy with immaculate lawns. Well almost immaculate. A couple of ugly holes courtesy of an escaping Captain Chaos. That’s compared to our garden which is more akin to a ploughed farmers field courtesy of moles, son and CAPTAIN CHAOS. Maybe 2020 is the year of the NEAT GARDEN. More likely it’s the year of the NEED A NEW GARDEN. So as the ball sailed over the hedge again son shouted.

Dad what would you call me now if I was a girl.

This time the curve ball missed.

“Laa Laa Po Dora the Explorer Elsa Tinkerbell”

Really Dad. All those names.

“No son Dads fibbing.”

Good I was getting worried. It’s a joke then

“Yes”

Maybe you could call me either Daphne Blake or Velma Dinkley

“Jinkies that’s a good idea”

So a day that threatened to be scuppered on a girls name ended with laughs about a girls name. Like many folks I operate on such fine margins. With so little separating happiness and sadness. I really hope this Christmas you find happiness.

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Kings, Queens and Telly Tubbies

4am When the world hopefully sleeps.

The bedroom door bursts open.

Sorry Dad can’t wait to ask. If you had to be related to a king or queen which one would you most want it to be and which would you be most embarrassed to be associated with.

Erm top of my head probably Queen Victoria and probably not mad King George III. How about you son.

Henry V would be so cool but he only had one child and he was pious so it’s not likely. Many would say King John as one your embarrassed with as he is seen as the most useless one but he was actually not as bad as that. Henry VII probably as his claim to the throne was illegitimate. Night Dad.

I then I had a bizarre dream about being late for a meeting with the Queen. A meeting which was to happen on a train in a random rainy town. And I got lost. At least Son had not asked about my favourite Telly Tubby. Getting lost on the way to meet my favourite Telly Tubby would have been a dream too far.

So at breakfast I decided to continue the historic theme. I convinced son to have a trip to see the beautiful ruins of a local Abbey. He wasn’t convinced but finally we set off. I really should stick to my level. The Telly Tubbies. We arrived to find the site closed until March and that knowing look from son. At least we got a few lovely views from the outside.

I gave our son the option of extending our trip but he just wanted to go home. Too many people about. That’s becoming an increasingly common comment from him. As the months go by he finds it harder to deal with social contacts. He can still cope with rock concerts. It’s because he thinks they are still very inclusive. Doesn’t matter what you sound like, dress like or look like – your just accepted. No condescending looks. It helps that it’s dark and noisy so it’s unlikely anyone will talk to him. He was also ok on our recent train night but that was onboard the train. Luckily no one was sat opposite us. On the platform he struggled. We basically stood inside a coal shed until we could board. He had been ok with the cinema but now if the screen has more than handful of people in then he can’t watch the movie. We were going to see Jumanji but the screen was half full and that was the end of that. At school he’s just not happy. The crowded school bus is becoming impossible for him. You can see the change in him when he’s back home. He’s confident and happy. Outside he’s nervous and wants to hide. As soon as we leave the front door his hood goes up.

I remember a conversation with a really good Child Psychologist who worked for a time with him. She thought that his social difficulties may well become more pronounced as he became a little older. She had worked with a number of kids a bit like our son and they had all found mostly happy life’s. But isolated life’s. One or two friends and some family contacts allowed into the inner sanctum. Pets and animals definitely. But the rest of the world – preferably not.

It’s early and things may change. He will follow his own path. I will be there as long as I’m needed. But it’s his own path and he needs to find the type of world he’s most contented with. A closed abbey with a handful of walkers being too busy is potentially an indication of the direction of travel. If that path takes us inevitably into a more isolated world then so be it. And for those interested my favourite Telly Tubby was Laa Laa.

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Music at Christmas

Christmas and Music go together. For some it’s carol singing. For some it’s festive number 1 pop hits. For some it’s relaxing classical music. For others it’s LOUD rock music.

The last week has seen not one but two concerts.

The first required a trip over England highest motorway to the other side of the country. To Manchester. This was to see Sons favourite band Alter Bridge. On this night they were supported by the wonderful Shinedown.

Lots of people but thankfully son coped well but it did require the full hood for the entire night.

Dad did his normal trick of keeping the ticket costs manageable by buying discounted restricted view tickets. It’s interesting that in our restricted view section it was mainly families. All probably dealing with the same financial concerns.

Son really really enjoyed himself.

Then 2 days later we had another concert this time in our local city. We don’t often get decent bands but it nice when we do. This time it was The Darkness.

Such a good night. Very loud and they are so entertaining. Very loud and very funny. They even did a Christmas song. The band wouldn’t start the song until they could see everyone holding hands with the persons next to them. Son was ok as he had me and his uncle. Meanwhile Dad had a liberating few minutes holding an enormous bear sized hairy bikers hand.

I often talk about how tough Dyslexia is. The problems it can cause. But occasionally having a young son with dyslexia is a much needed parenting help….

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Christmas Diaries 1

It’s been a grey moody day. It never once looked like clearing. At least it didn’t rain for a change.

The zero based hours contract gave me me three hours work today. For the next couple of weeks any work demands will be minimal. Not great for the bank account but it allows me to now focus on our son. So with a couple of days before the school breaks up – Christmas is about to start in earnest. So an early warning. You may get a few Christmas Parent Diary entries coming your way. Hopefully most will focus on the happy side of life. It almost certainly will feature a few cooking disasters. In fact let’s sort the first diary entry out right now.

So after the work dried up it and the grey run was completed it was time for a bit of baking. Time to make a stunning gluten free stollen cake. A few chaotic shopping trips had stocked up the larder with all the ingredients. This time it’s going to be baking heaven. Hang on a minute where’s the marzipan. As I love the stuff I bought 4 slabs worth. But where are they. Absolutely no sign. Don’t you just hate it when that happens. No problem I will just pop to the local store. Don’t stock it but they did have infeasible amounts of glazed cherries. So off to the supermarket. How can a supermarket run out of marzipan. How can the only other store reasonably close by also have none in stock. I gave up so let’s just make a Christmas cake. Three hours later I’m looking at a baking abomination. Crispy on the outside, undercooked on the inside and a ginormous sinkhole at its centre. The birds will eat well tomorrow.

So ends the first Christmas diary entry. But let’s do the diary preface now.

Christmas can be lovely and fun but wow can it hurt. It’s one of those times which naturally draws you to what you have lost. I was reading a blog which talked about this in such a haunting way.

All aboard! The holiday struggle-bus is pulling into the station, and I’ve got a ticket to ride.

That bus hit me yesterday. I was simply wrapping our sons presents up. Instantly I’m taken back a few years. Christmas music on. A couple of glasses of wine. My partner a ninja master at unwinding the cellotape and securing the edges of the wrapping paper. Unbelievably I was an expert at finding the best way to wrap the presents up. The perfect production line. So effective and so loving.

Now I sit on the floor with a tea and whatever is on the radio. To be honest I’m not listening. The presents are still being wrapped well but the cellotape has won the battle royal. It’s wrapped around my fingers, on my clothes, stuck to furniture and yet refusing to go anywhere near the wrapping paper. Love and happiness replaced with frustration and sadness. It’s never going to be like it was. That love is not going to be replaced. Those shared dreams are binned. It’s a truly sickening feeling.

It’s so easy to forget that this can be such a tough time for so many you are bereaved. For so many in pain. For so many without anything. For so many who are lonely. My heart goes out to you. You have a soulmate here.

Yes over the next few weeks this blog might get a bit silly. I really hope it does because it shows that I’m doing my only important job. Trying to make Christmas as fun as possible for our son. But underlying it will be someone still grieving what has been lost. My hope is that some of that Christmas magic which hopefully is enveloping our son will rub off on me. Showing that you can grieve but it’s still possible to have fun. If it works for me I really prey it’s rubs off on you as well.

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Need the full picture

Glorious weather for this morning’s run?

Looks can be deceiving. Looks good with a creative but of zooming. The actual full picture taken seconds after the first photo tells a different story.

Actually it was a cold, dark and damp run. Only seeing part of the picture can make such a difference.

One of the current on going battles with school relates to our sons dyslexia. What support does he need when answering written class questions or when he’s taking tests. At present he receives no help with reading questions or is given no additional time. The schools argues that because his marks are generally really good then he clearly doesn’t need help. Interestingly school seem to think his marks are too good to warrant help and yet he is classed as low attainment. The other reason school argues for not providing any help is that he doesn’t put his hand up and ask for it. Seriously which kid is going to put his hand up in a class of 30 plus pupils and announce that I can’t read this. It’s not going to happen. I don’t think I would put my hand up if I was in that position.

Let’s look at a few of questions our son has got wrong recently.

How many sides and angles does a parallelogram have?

The teacher was surprised he got this easy question wrong. Now let’s look at how our son reads the question. Remember with his dyslexia he can pick up no more than about half the words with the other words he fills in with educated guesses or leaves them blank. So the question he worked with was

How many sides and a……. does a p………………….. have? He correctly guessed the missing a was angle but the p was more of a problem. Is it parallelogram or Pentagon. He guessed Pentagon as he thought parallelogram would be too easy a question. He answered his maths correctly but got the actual question wrong. No marks. So let’s look at another maths question.

In a sale, the price of a notebook is decreased by ten per cent. What is the new price if the old price was one pound twenty pence?

Need my calculator for this one. Now let’s see the question our son read.

In a s…, the price of a n…………. is d…………. by ten per cent. What is the new price if the old price was one p…….. t………. p………? Suddenly this question goes beyond a calculator. He guessed the d was discounted which was ok but the price he used to work out the answer was one pound thirty pence. He used the right calculation method in his head but on the wrong amount. So he got no marks. His mathematics was perfect but he was penalised for his reading skills. Ok let’s look at a science question.

Tissue is a structure made of many cells performing a similar function and different tissues do different jobs. Which tissue carries the fluid containing nutrients, oxygen and waste products?

This question made me think. Now let’s try to answer the question our son could see

T……. is a s……….. made of many cells p………… a s………. function and different t……… do different jobs. Which t……. c……… the fluid c…………….. n……….., oxygen and w…….. products? To me that now becomes almost impossible to answer. He correctly guessed the T was tissue but was not sure as it could be tongue. He guessed the W was water. Unsurprisingly he didn’t answer this question just leaving it blank. Let’s look at one more question.

Refer only to Paragraphs 3 to 9. How is the author trying to build tension. What emotions are the two Detectives experiencing?

I will address the elephant in the room soon but our son read this question as

R….. only to P………………. 3 to 9. How is the author trying to build t………. . What e……… are the two D………………… e…………………….? Son eventually worked out roughly what the question was asking but it took him quite a bit of time. That’s limited exam time used up before he can even start thinking about answering the question. And the elephant in the room. That’s someone with dyslexia expected to read two pages of literature without help…..

This just does not feel like a level playing field. Not a fare chance. I know school argue that he’s doing ok in tests. But how good could he do with support or with straightforward adjustments. We just don’t know at the moment. Maybe this is his level. Maybe his level is higher. What’s the harm in giving him and kids like him a chance. That question is aimed at school and more importantly the Schools Minister. I wonder if they properly see the big picture.

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Northern Lights Express

General Elections in the middle of December are unlikely to be conducive to establishing that festive feeling. So we arrive at Friday the 13th are still no thoughts of Santa. So action was needed. Time for a train journey

A train journey with a difference. The Northern Lights Express on the North Yorkshire Moors Railway.

The North Yorkshire Moors Railway is an historic 18 mile line that runs across some of the most beautiful countryside in Britain. It’s a not for profit charity with its daily operations carried out by volunteers. It has a fleet of historic steam and diesel locomotives. It is special to our son as his Grandad helped establish the Trust which eventually reopened the line in 1973.

So on this night. The entire outside of the train was decked in lighting. Inside decorations and mulled wine. Son tried to convince the nice volunteer to let him try the wine. But she resolutely stuck to her guns

“Sorry your just a few years to young. Maybe your Dads old enough to buy one”

His reply made me crawl under the table.

Look at his thinning hair on top. That’s tells you he’s way past 18.

The fairy tale story was told and we board the train.

Look out the window at the magical looking forests while listening to Christmas music. The announcer lets everyone know that the Driver has spotted some magical creatures ahead. The carriage goes over a bump in the track and Son instantly informs the carriage that ‘the trains just hit one the magic creatures’.

Then the creatures appear in the forest.

On the return journey it’s a Christmas Quiz and a Sing Song. That’s the first time this year I’ve tried to sing a bit of Wham. The first part of the journey pulled by a B1 Class Steam Engine built in 1947.

The engine pulling the return trip is called Sybilla and is 54 years old.

The election is forgotten for a while and yes it feels a lot like Christmas now.

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Pink

Colour hanging grimly on in Yorkshire. This is an oasis surrounded by unremitting greyness.

Truly dreadful weather day. The wind has been blowing horizontal rain at the back door all day. Currently on the third towel trying to keep the utility room dry. It’s a bit of a losing battle. Let’s hope it’s the only losing battle today. I went to vote straight after the morning’s school run. Let’s leave it as that. Tomorrow will either be a hopeful post or a monumental rant of a post. You have been warned.

I’m writing this as son sits on the sofa watching a documentary on his tablet about Auschwitz. Yesterday he watched a few videos on the plight of the Palestinians. Puts everything into perspective. The fact that the youth of today watch this gives me hope for the future. Let’s hope we leave the next generation with a habitable planet so that they can mould a far better world.

With work for the day completed I set off for a run. Better described as a splash. Wow it was wet. After a few miles my poor hands were frozen so I foolishly put them in my waterproofs pockets for a warm. Rather than finding a haven of warmness they found a hidden pool of cold rain water. Lovely. I’m pleased that I opted for shorts. Not sure I fancied my leggings shrinking. My mind goes back to a mountain marathon during my university days. A six hour night drive to the Highlands of Scotland ready for the 9am race start. Everything was going so well until we arrived and changed for the race. I had forgotten my shorts. 30 minutes to the start time and the nearest sports shop was 20 miles away. The strange looks I was was getting as I walked around the runners saying ‘have you got a spare pair of shorts’. Looking like I would have to sit out the race when my race partner came to the rescue. ‘I can wear my shorts and you can try to use my leggings’. The problem was my partner was called Suzanne and she was somewhat more petite than me. To much laughter on her part I squeezed into the tight leggings. I was the only male competitor running in bright pink. It was also the only competitor that completed the race in with tears. Must admit the constrictor leggings did wonders for my dodgy hamstrings. But since then tight leggings have gone nowhere near my nether regions.

With my wet run completed it was a quick change and off on the school run. As a I arrived a very sodden Son trudged across the car park still in his sports gear. You could see him shaking with cold and the water dripping off his clothes. With the car heating full on he tried to get changed into his dry school uniform.

*****

“You’re drenched why didn’t you get changed out of your wet kit”

I didn’t want to risk it. We only get 5 minutes to change. If we are not out in that time you get a negative from the teacher.

“Have any kids been given negatives”

Virtually every week at least one kid gets a negative. It’s unfair especially as it’s the last lesson of the day.

*****

And another telephone call will be made to school. Five minutes. When I played football it would take me at least 10 minutes to get changed. It took five minutes just to prize my constrictor pink leggings off my butt all those years ago. Five minutes sounds tight before you factor in Aspergers and Dyspraxia. Getting changed does not come easy to him. School have been told this on several occasions by me and in writing by the Paediatrician. So much for the school making positive adjustments to make his school life comfortable and enriching.

It’s the frustration felt by far too many children and their parents. Everything has to be fought for. It’s a battle to get a diagnosis in the first place then the real fight starts. Trying to get any positive adjustments and help. As much as the media try to paint a different story … we are not looking for special treatment … we just want our kids (all kids) to get a fair chance in life. Is that too much to ask for.

*** late addition *** it WILL be a monumental rant….

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How many H’s

It’s been raining. It’s been windy. It’s been awful.

It’s been one of those famous Yorkshire weather days. The type of day you think it’s wise to deploy the life rafts then you realise anything not bolted down is being propelled to continental Europe on the jet stream. Absolutely chucking it down. The rain is almost horizontal as the wind is whistling in. The thermometer is saying it’s not that cold but any skin exposed to the elements is turned blue within seconds. My Dad would call it a two jumper and waterproof socks day. The type of day he would have got the ark out and filled it with the important stuff – his prize Rhubard.

As a child I could never spell Rhubard. In Yorkshire that normally is punishable with excommunication. It’s much worse. I’m probably the only Yorkshire citizen who does not like Rhubard. Good job nobody reads this as saying that is equivalent to witchcraft here.

Who thought it was a good idea to put the H in that Yorkshire delicacy. If it’s bad for me try explaining that to someone with dyslexia.

Dad I’ve got this weeks spellings which I’ve got to learn for Fridays test. Are you sure there are no negatives for getting less than 10 out of 15.

“No the Head of Year has stopped those negatives. Why are they difficult.”

Dad your asking someone who is dyslexic…

“Sorry. Are they ridiculously hard this time”

About as hard as explaining why light bends round massive objects.

********

I thought I understood Spacetime Curvature and General Relativity until son picked my reasoning apart the other day. So those spellings must be super hard. Having now seen them they are beyond General Relativity difficulty. Actually they are on a difficulty level as trying to get a Tax Returns from a certain Donald Trump.

Anecdote

Memorable

Audience

Alliteration

Persuade

Rhetorical

Who put the H in rhetorical. Looking at our sons confused look clearly he doesn’t understand the sneaky H as well. Apparently the spellings will get increasingly harder over the coming months. Can’t wait for June. At this rate son will be trying to spell words like

Apatosaurus

Diplodocus

Xiongguanlong

Epidexipteryx

Allaeochelys

Carcharodontosaurus

Huehuecanauhtlus

Who put the 3 H’s in that Dinosaur.

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Change

That’s either a years supply of fire wood or one monumental nature hotel. I strongly suspect it’s not for nature. It’s strange how things can change. One week a pile of wood is home to nature the next its ashes in a fireplace.

Immediately after my partner died I suddenly started to experience significant isolation. Largely cut adrift from society. Your life becomes intertwined with that of your partner and your own sphere of social contacts gradually drops accordingly. Rupture that partnership and you rupture your social life. On most days my only opportunity to socialise was at the school gates. The daily school run became a source of much comfort. I could talk to other parents and son would interact with the other kids. Being a small school really helped him.

Fast forward a couple of years and the school run experience has completely changed. Bigger school. No gate anymore. The parents who do turn up stay in the car and wait for their son or daughter to find them. No one gets out of the car. Very isolating.

Then you see the kids leave school. Mainly groups of kids. Twos, threes or more. Occasionally you see one walking by themselves. Son always walks by himself. Suddenly it feels a very very dispiriting experience. It wasn’t supposed to be like this.