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 The outcome – the service was withdrawn as he no longer met the clinical requirement.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.

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.

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.

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.

Unwanted anniversary

The way forward is sometimes difficult under foot.

Another storm is heading our way. Storm Jorge. The world news is grim and unremittingly depressing. Definitely no solace at school. Son scored 14 out of 15 in his Drama spelling test. The one he got wrong was Unferth. Unferth is a warrior who opposes Beowulf. It’s not a word he’s likely to use much in life. I am so pleased with son. I wouldn’t have got 14 and I’m not dyslexic. Yet the teacher told him to try a bit harder as a few of the kids had got all the spellings correct. Deep sigh.

Today has been tough for me. The above factors don’t help but they are not the main cause of my struggles. No it’s a grief thing again. Son’s birthday is fast approaching. Since she left us this is just one of those times. Her organisational skills would go into overdrive as his birthday approached. She would be so excited. Her love would shine through.

Then the world changed. (That was going to be the original name of my blog site but I messed up the setupBereavedDad was a cockup).

So today I was trying to sort out his birthday and I felt so wrong. She should be here enjoying this time as well. I’m not often bitter but today I was. What is making this birthday so raw is that he is turning into a teenager. My partner has missed so much of his childhood and never got the opportunity to see him grow into a teenager. It wasn’t supposed to be like this.

But unfortunately feeling sorry for myself isn’t going to help. It’s not going to bring her back. It’s certainly isn’t going to deliver any presents. It’s not going to yield a happy birthday for our son. It’s not going to make him smile AND his smiles are the only currency I should deal in now. So give myself a proverbial massive kick up the butt. Turn the news off. Play some loud music and fully commit to birthday mode. That’s what my partner would do and by jiminy – that’s what I am going to do.

So yes the way forward is sometimes difficult under foot but you still need to follow it.

Toying

Another weekend and more grim weather is heading our way. So this is the calm before the wet and windy stuff arrives. For those with good eyesight – you can just about see York Minster in the background.

So given the weather we are likely to be falling back on indoor games to amuse ourselves. Kinda looking forward to that.

School is being school. Son is still giving it one last chance. But I get the impression that his spirit is starting to ebb away. But still he has hope that he might get moved up in at least one set before he leaves. He’s done well in the exams given the lack of dyslexia support he received. A low mark in Drama but we have seen the approach they take to the subject – let’s think spellings. French he came midway which is good as he lost lots of marks for his French spellings. As he points out – ‘I’m dyslexic in multiple languages, if I can’t spell in English what chance do I have in French‘. He’s been told he did well in history which is amazing as he had to type in his answers on a computer – his fine motor difficulties makes typing slow and problematic. He came first and second in his maths papers – he lost marks as he misread some of the wordy questions. In Science he was top in his class by a clear 20 percent – a subject which probably did the best job at getting reading support in place.

So son is waiting and hoping that maybe he might get a set move up in at least Science and Maths. Hopefully in his best subject as well – History. Fingers crossed. Even if he does get the move I suspect it’s more about a confidence boost than making a long term commitment to mainstream schooling. Homeschooling will be happening just now a question of when.

I’ve been toying with dilemma. Each night son loves to play a little games competition. Mini Air Hockey, Connect 4 and Jenga. I’ve been trying to decide on another game to add to this daily schedule. Been considering many board game options. Maybe something culturally and mentally enriching. Well at 3am I pressed the purchase option on Amazon. Hopefully it arrives before the weather.

Kerplunk….

Sod’s law

Don’t you just hate Sods Law (Murphy’s Law). Son has been desperate for some snow to have a sledging session. This season has been a complete right off so far. He’s just had a week off from school where it has basically been storm force winds or torrential rain. Not a sniff of the white stuff. So guess what. On the first morning back at school we wake to this.

And by the time he got back from school the snow has been replaced with rain and high winds again. All the white stuff has gone. He is so so sad. It’s not as if school was in any way enriching. It started with any kids arriving late still receiving negatives – no allowance for the awful roads and paths. Welcome back kids to this happy establishment. First day back and homework is being handed out like confetti at a wedding. Long lunch queues and over running lessons meant no hot food for his class. AND THEN we come to Drama.

The school is clearly desperate to produce the next Laurence Olivier. It’s chosen route. Spelling Tests.

So here goes my friends, your first spelling test of the term. Enjoy.

Grendel

Marking the moment

Proxemics

Thought track

Status

Narration

Levels

Themes

And I’ve saved the best till last

Beowulf

Heorot

Uniferth

King Hrothgar

Dane folklore spellings – what a top idea. So school has started off again being exactly the same grim, oppressive institution. It’s never going to change under this Government and it’s Victorian approach to education. I’ve again given him the option to be homeschooled and again he has reluctantly declined. He still wants to see if he gets moved up in any of his classes. But I must admit another school snow day may just push him over the edge. And I really couldn’t blame him.

How wrong I was

Not our garden, this is from a neighbours garden. Very jealous especially of the lawn which when cut always resembles a bowling green. So unlike our used rugby pitch.

Another stormy and very wet day. That’s the third weekend in a row for us. The weather is doing nothing for our souls. Nor is the imminent return to school. His anxieties levels are starting to peak now. Soon he’s back into that alien environment. The hope is that he will return and he’s been moved up in at least one subject. Just move him up in History and it would boost his confidence so much. I fear that’s a pipe dream. I would also be staggered if the support system has suddenly improved. How can it. It’s the same teaching team, with the same school education strategies and with schools struggling for resources. But on the bright side we have been told to celebrate as soon we will have a new blue UK passport. A passport made in France….

Maybe he will decide to abandon the failed school project. Can’t blame him and I would fully support that. It would be so worth it to lift this cloak of anxiety which often suffocates him. It’s not as if the school approach is delivering results. In most subjects he’s bored and starting to stagnate. I have asked school for the latest benchmark data on his reading, writing and performance. Again I’m not holding my breath. I’m still waiting for school to do any meaningful assessment work on his reading or writing. I suspect it will be spelling tests and nothing else. The Physiotherapist contacted school to say that he was clearly struggling with handwriting and asked what concerns the school had about his handwriting. The response back was that no teacher had raised any concerns. Really….

At his last school they worked with the heath service to monitor his reading age every quarter. He left that school with a reading age three years below the expected level for his age. His current school has so far refused to do another benchmarking assessment. The argument is that he’s doing so well and a benchmark would not change his teaching programme. Read that as they cost money and all kids get the same set teaching approach. Well if you don’t have benchmark information how can you say he’s doing so well. We don’t know if he’s catching up or if the age gap is widening.

It’s funny looking back at this parenting gig. I always realised it would be frustrating and tiring. But I always assumed the school system would largely take care of his education. How wrong I was.

Poets Society

The feeding zone has been active today with the usual characters. Yes the characters are making a mess of the lawn but it’s always so good to see them. We don’t get too many human visitors these days so who is going to notice the rugby pitch of a lawn and I don’t think non-human visitors are that fussed.

Another largely sleepless night. One short dream, a viewing of the stunning yet grim Everest movie and a bout of late night blog catchup. While reading a friends post a thought entered my zonked out brain. How many other souls are struggling with sleep currently. We really deserve our own secret club. Maybe the name should be The Dead Tired Poets Society. Dead Poets Society is a truly stunning movie. If we want to be selective we could be the Dead Tired Parents Society.

But why stop there. We could have so many subgroups.

For the financially challenged – The Dead Broke Poets Society,

For the puzzled amongst us – The Dead Confused Poets Society,

For the bad cooks – The Dead if you eat this cake Poets Society,

For those feeling happy – The Dead Chuffed Poets Society,

For those who can regenerate – The Deadpool Poets Society,

For the rubbish Fortnite players – The Dead in five seconds Poets Society,

For the rubbish negotiators – The Deadlock Poets Society,

For the strong amongst us – The Deadlift Poets Society,

For the gardeners amongst us – The Deadheading Poets Society,

For the Monty Python lovers – The Dead Parrot Poets Society,

And for the impassive people – The Deadpan Poets Society.

Today was another fun day. Fun but with son’s anxieties bubbling just beneath the surface. I have emailed school to tip them off but deep down I know they won’t do anything. The teachers won’t be informed and if they were – what would actually happen. Not much. I’m not sure how much training this group of teachers have had in dealing with anxiety. They certainly have had little specialised training in areas like dyslexia and autism. Maybe that’s why my first questions to the teachers tends to be

You do know he has Aspergers and you do know he has Dyslexia and you do know he has Dyspraxia.

The look I get back with the generally vague replies suggests either they don’t or they do but given the 1000 things they are dealing with this is never going to be a priority. So my parenting anxieties are mounting again. That’s why having fun is so important. It’s great for my son and it’s such a release for me. A release which is even more important when sleep fails you. Can you guess what tonight’s insomniac movie is. I’ve dropped enough clues.

Dead Poets Society.

End Game

The way forward is shrouded in mist but a clear route is emerging.

As we move into the second week of the Year 8 exams we have a clear state of play emerging. Son is trying his hardest, school clearly is not. Son again was upset this weekend as he clearly thought that school sees him as not very bright and a failure. He found out that he came third bottom in his Drama exam. Well was that surprising when he was given only a short period of time to read questions then an equally short timescale to write answers. Absolutely no help was provided. So clearly autism, dyspraxia and dyslexia do not apply in the world of Drama.

Sadly this has not been an isolated incident.

  • In subjects like Mathematics, Design Technology and French he received zero help. No additional time. No help with reading. Nothing. Maybe help was considered but as Son pointed out

One of the kids broke his hand so the one Teaching Assistant had to scribe for him. Maybe that’s why I didn’t get help. I really struggled to read and understand the questions. Even maths had lots of words I didn’t recognise in the questions.”

  • History did not proved a scribe but he was given a laptop to type his answers in. So he still had to try and read the questions. He was given a laptop because the teacher was concerned about being able to read his handwriting. Problem is that son is waiting for some therapy work to try and help with his typing skills. His typing is slow and very inaccurate. He hadn’t practiced answering test questions on the computer. The computer also had the spelling aids disabled. No additional time was provided.
  • Science and English did provide a scribe. He hadn’t practiced working with the scribes provided. He was really uncomfortable trying to work with the two assistants he had previously had very little interaction with. He had thought incorrectly that he was getting extra time but with a couple of minutes to go the scribe just said the exam is finishing when it’s 10.15. He struggles to tell the time using an analog wall clock. The scribe in English only read out the questions. She was not allowed to read out the passages which he had to answer comprehension questions on.

What was the point. The scribe would tell me things like for this question you need to read lines 5 to 12 of the text then describe what writing techniques the author has used. Well I would if I could actually read the text. Some of the text was using slang language – I struggle with proper language, got no chance with slang.”

So basically it’s been a mess. If his marks are not good then this is going to hit his confidence going forward. Currently school are deadpanning my queries but I guess they will just say that appropriate support was provided and he just needs to work harder. Poor results will confirm their assessment of low attainment. I just hope for his sake that he manages to get some decent marks. I’ve told him that for me it’s not he who is being assessed, it’s school. And clearly school have failed – AGAIN. To quote a reasonably popular movie, it feels like that we are moving to the mainstream education END GAME. No we still can’t truly afford to homeschool but this failure of due care can’t go on. Son deserves better than this.