Posted on by bereavedandbeingasingleparent · 54 Comments

Says it all really

Had to complete another report today about our son. It’s amazing given the number of reports we have had to do that they don’t ever seem to get any easier to write. Maybe it’s just me. Anyway today’s report featured some interesting questions

When did you first realise your son or daughter may have autism?

That’s an interesting question as I don’t think we ever had that one eureka moment when we suddenly realised he was on the spectrum. It was more of a drip feed type of realisation. If we are looking for one point then maybe when he was 5 and the first medical professional said that we should start the process of getting an official Aspergers diagnosis. One confusion – when we started the process Aspergers and Autism were listed as separate life long conditions. Now most agencies have dropped the term Aspergers. Son quite likes the idea of having a condition which doesn’t officially exist anymore.

What initial behavioural signs led to your belief that your son or daughter had autism?

Strangely we didn’t have a checklist of symptoms to work from back then. We didn’t have a clue on what we were supposed to look out for. It’s only when you look back that you see the clues. In our case we had several apparently independent clue strands that we should have brought together and bagged under a heading ‘potential Aspergers’.

  • Repeatedly lining toys like cars and animals up in perfectly straight lines
  • Initial slow development of speech
  • But when speech started a sudden extensive vocabulary developed but with underlying problems with pronunciation
  • Flapping hands when excited or laughing
  • Not able to sit still
  • Fixation on specific objects or toys
  • Delayed walking and crawling
  • Excessive clumsiness – that might be my genes….
  • Refusal to wear socks and shorts

But what confused things was that up to the age of 4 he had no problems with making eye contact. Plus he had many many friends. He loved playing in groups. He did have sensory issues relating to his hearing but they were being examined as a specific ear issue. He has never shown any sign of a lack of empathy.

It was only from the age of 5 that his symptoms seemed to heighten and suddenly combined with becoming completely withdrawn from the rest of the class. Rather than being in the thick of play he would stand completely by himself. Additionally his specific ear issues were ruled out and the focus moved to looking at sensory overload. Yes he started to fall behind at school but that was probably the initial impact of dyslexia.

How well do you feel the education service has supported your son or daughter?

They only left 3 lines to answer this question. I asked our son and he said that 3 lines is more than enough to write ‘PANTS‘. So that is exactly what I wrote. I suspect I might go back to this and elaborate a little more but part of me hopes that I stick with the original response. Says it all really.

Posted on by bereavedandbeingasingleparent · 43 Comments

Waiting

Apparently a heatwave is about to hit Western Europe. I’m not sure the required paperwork and clearances have been signed off for Yorkshire yet. As a result it’s gone back to cold, cloudy and very wet. Here this is called proper weather.

Anyway let’s see if the much vaunted hot stuff arrives. Knowing our luck it could be a long wait. But we are accustomed to waiting for things.

  • Snow at Christmas … 10 years
  • My so called football team winning a domestic trophy … 64 years
  • A U.K. Van Halen Tour … 35 years
  • Last Total Solar Eclipse in Yorkshire … 92 years, next U.K. one 2090

We can add to these the following waits.

  • Bereavement counselling for son … over 2 years and counting
  • Waiting to have son’s dyslexia initially assessed by an Education Psychologist … over 3 years
  • Aspergers Review and Assessment … 2 years
  • Dedicated Aspergers Therapy … 1 year
  • Anxiety Therapy … 6 months
  • Speech Therapy … 4 years
  • Paediatrician Assessment … 1 year
  • Parent Training on Autism … Never going to happen So far 5 years

You get the picture. Nothing comes easy. As a parent. As an Autism Parent. As a Aspie Parent. You have to push for the support your kid needs. Constantly chasing up contacts. Everyday seems like a new or recurring battle. Letter after letter. Chasing up phone calls. That’s something which isn’t mentioned when you start your new life journey. You sort of assume that the professional help will be there when you need it. You quickly find out that the professional help is withheld or is delivered at times to suit the system rather than the child.

What the system doesn’t seem to appreciate is that you get such a short window of time to foster real progress. As one psychologist said

Up to about 14 years is the development sweet spot. That’s when the real, long lasting progress is usually made. That’s when you have a chance to start closing the educational gap. After that it becomes increasingly difficult. If it’s left too long then its probably just about trying to stop the educational gap widening too quickly.

The frustration that causes you. It’s hard to explain that feeling. Maybe constantly walking in treacle. Every step forward is such an effort and yet you are so far away from your destination. But the fight has to be fought. As long as our son wants me to keep pushing then I will keep pushing. That’s what parents do.

Posted on by bereavedandbeingasingleparent · 105 Comments

Moody

It’s been one of those days. Lack of sleep, work piling up, house falling to bits, nothing seeming to go to plan. Mood level – somewhere between not great and moody. This photograph sorta sums it up.

Well Son went to school for the first time since he had his accident at school last week. He was still in a lot of pain but we decided to give it a go. Dosed up on child painkillers he was dropped off. School given clear instructions to contact me immediately if he was struggling with the pain and I would pick him up.

No phone call came from school so I assumed things went ok. If only.

Apparently during his first lesson the pain started to get worse. At the end of the lesson the class teacher noticed he was struggling and he was told to get his bag and go to reception. Reception then sent him to see a senior teacher – a teacher who has had no contact with our son previously. Son told him the circumstances, that he was struggling with pain and the instructions I had given school. The teacher went onto the computer and after a few seconds said something like

“You have had a lot of time off. Your attendance record is too poor for you to be sent home. Go to reception get some painkillers and then go to your next lesson.”

So he stayed in school, in pain and in his words not able to concentrate on any of his lesson.

Mood level now – pissed off.

Yes his attendance record has dropped below 95% – a Government target. Yet that’s because he has had two accidents AT SCHOOL which have required hospital intervention and medically approved time off. Take those out and his record is just about 100%.

So it appears that if attendance drops below 95% then regardless of pain level or illness, a child will not be sent home. However a child with an attendance over 95% would be sent home. Apparently today a girl fell over and hurt her knee. She was in tears and clearly in a lot of pain but was not sent home due to her attendance record. Yet a boy who had a sore throat was sent home because they had a good attendance record.

Mood level now – Apoplectic.

So tomorrow I will drop off son and then demand to see the Headteacher. The only reason I’m not doing it now is that son wants me to calm down as he doesn’t trust me at the moment. That is probably a really good call.

Posted on by bereavedandbeingasingleparent · 55 Comments

More school days like this

We have had some big anxiety attacks and tough times recently so it’s nice to have a stress free post.

“Dad I shared a desk with a ladybird today. He watched a bit of history with me.”

It’s always good to get close to nature. Especially when you are at school.

“I wish all school days could be this good”

The school has a system that everyday a pupil is taken out of classes and assigned to school reception. Basically for the day they deliver messages, photocopy stuff and do admin tasks. It’s supposed to broaden their horizons. Today was our son’s turn. It certainly broadened his.

“Basically every so often I would deliver a message to a teacher. It was funny when the receptionist asked me to deliver a message to a teacher and the teacher was stood at reception. I delivered it without moving. Then I had to deliver a message about a kid who couldn’t come in today as he had come down with flu – he said he was doing this yesterday as he hated French.”

“Greta would be very annoyed with me. Every time I used the photocopier I kept getting the paper upside down. Wasted so many sheets. I did get a great copy of my hand”

You can’t believe how relieved I was when he said hand….

So what happened when you had no work to do.

“I went to see the teachers and they just sent me back to reception. Finally one teacher told me to go to the library and get a book to read. Ha ha he doesn’t know I’m dyslexic. So I improvised”

Did it involve your iPad and games.

“Not entirely. Yes I played some very educational games like Space Invaders and Sonic. But I also watched a historical thing about how bad the British Empire was and how the navy went after Pirates.”

So you watched Pirates of the Caribbean.

“Yes. What a top day.”

Posted on by bereavedandbeingasingleparent · 45 Comments

Parent Evening

Sometimes school does make me laugh. On his return from school today I found a severely scrunched up piece of paper. It’s the invite to the annual parent/teacher consultation. I’ve got to decide which teachers I want to see. Tick the appropriate boxes then get ‘your son or daughter to arrange times with the teachers’.

I just looked at our son and said that’s not going to happen is it really. Son smiled and said

“Never in a million years”

Then we both burst into fits of laughter when we read the next bit of the letter.

We are happy for students to attend with their parents. School uniform is not required but we do ask that students do not chew gum or wear hats whilst inside the school building.

WHAT

“Dad isn’t that Hatist …”

Yes son it’s very anti hat and it’s also very anti kiddie as well. So apparently it’s ok for an adult to chew gum and wear a hat but not a child.

“Dad does that mean that I’m ok going in nude or wearing a satanic cross as long as I’m not wearing a hat..”

Apparently so.

So we probably won’t get any teacher appointments booked but we are still turning up so I can wear the biggest and silliest hat I can find at the charity shop.

Posted on by bereavedandbeingasingleparent · 93 Comments

Storm Bunker

We had a large thunder storm pass over this afternoon. The cat was taking no chances. After the first bang he made his way to his storm bunker.

Unbelievably the early morning cinema screening was very full. The cinema was mobbed. Not seen crowds like that since the ‘Everything for a Pound’ Store had a sale. It’s not a statistical significant sample population but from the early morning hordes I guess that The Avengers movie is going to pull in some astronomical numbers.

And yes it is an astonishing movie.

Yes the crowds unsettled our son but we took our customary place on the front row so no one could be in front of him or to the left of him. It’s so close to the big screen that I come away feeling like I’ve been chewing on magic mushrooms but it works for him.

For 3 hours we both lost ourselves in the Marvel Universe. All our problems and anxieties forgotten. Heroic deeds fill your heart. With even a bit of free grief counselling thrown in by Captain America. But sadly it doesn’t last. You eventually find yourself back in the same place with the same issues.

In fact it feels like we have regressed. Fifteen months ago we eventually secured some anxiety counselling for our son. I say ‘we’ as the fight to get some help started while my partner was still very much with us. It seemed to really benefit him. Progress was starting to be made. But now due to cutbacks that support has dried up. The anxieties are building and it feels like the system has cast him adrift again. We have been lucky really – far too many families get zero help – all they get is patronising comments from politicians who have no interest beyond their off shore bank accounts and rich friends.

So as the thunder rumbles on we try to fight demons. Health anxieties, fear of death, school anxieties, friend anxieties, social anxieties, reading anxieties, fear of being left alone anxieties…..

I’m no psychologist. I’m no health professional. I’m no education specialist. I’m not a grief counsellor. I’m just a parent trying to figure out this increasingly bizarre world with no one to help guide me. Doing the best I can. Deep down this scares me as what chance do I have when I can’t even come close to fixing myself. Queue worried face. 😱

Pleased to report the immediate threat to life and property must have passed as the cat has made his way back to his favourite chair again. That’s one less worry to deal with.

Posted on by bereavedandbeingasingleparent · 57 Comments

Money is clearly everything.

Our local council is North Yorkshire County Council.

Over a year ago our Local Council agreed to make savings of £2m to its service budget. Unbelievably our Council decided to end free home to school transport for disabled and special needs pupils aged 16 to 18 years old.

This is the same council who does not provide any specialist support to kids with dyslexia.

This is the same council who has been cutting the size of Educational Health Care Plan grants to disabled and special needs kids who somehow manage to get through the tough pre qualification assessment. Penalising the very kids who need the highest level of support.

Today our Conservative Council – that’s the same party our Prime Minister heads, thats the Prime Minister who recently said ‘I’m on your side” – announced that the first year of the cut has resulted in a £800k saving. The Council reviewed itself on this issue and concluded that “the implementation of the policy has not had a detrimental impact on the ability of young people accessing their education”

Well that’s well earned pat on the back for the Council then. Is it just me who gets beyond severely pissed off with this – please tell me if I’m missing the point with this because I will happily crawl back into my little hole if it is just me.

Maybe some of our esteemed councillors should venture out of their plush council chambers, get into their Jaguar, BMW or Mercedes cars and actually see what the real world is like for a change.

Posted on by bereavedandbeingasingleparent · 56 Comments

Hermione

On the other side of this Bush is a stunning view yet it’s blocked by plant beauty.

Our Son loves history. You often see him watching very in-depth documentaries about a vast range of historical subjects

  • Romans
  • Viking
  • Pharaohs
  • Greeks
  • Persians
  • Incas
  • American Presidents
  • British Kings and Queens
  • Battles and Wars
  • and on and on

Unfortunately he doesn’t get the chance to extend this knowledge at school (yet).

It’s probably due to being put in the bottom set due to his dyslexia but the teaching is at such a low level. Son says he will keep watching historical videos as it’s the only way he learns anything new. He smiles when he calls himself the Hermione Granger of the History class. If the teacher asks a question he is always the first hand up but is never selected to answer.

I think one incident really sums up the problem.

In a test the class were asked to name facts about King John. Our Son then provided an in-depth answer which talked about

  • When King Richard the Lionheart was captured on the third crusade John (his brother) negotiated with the captors to keep him imprisoned
  • He lost most of his fathers empire
  • After he was forced to retreat from France he alienated himself from the many of the barons and a rebellion started
  • Eventually the two factions started negotiating after months of conflict. The end result was the Magna Carta which limited the power of the crown.
  • He then got the Pope to declare the Magna Carta invalid sparking more civil conflict which spilled into the reign of the next king – his son Henry III
  • He may well have killed his nephew (Arthur of Brittany) a potential rival
  • John was excommunicated when he refused to let the Pope have a say in the selection of a new Archbishop of Canterbury
  • He probably died of dysentery

That is my son speaking not me. My knowledge of John ends with the Magna Carta being signed under his rule and the stuff in Ivanhoe.

His teacher spoke to our son and basically told him that he provided too much information. That he was in Year 7 and he shouldn’t know this stuff until Year 10. That’s a way of inspiring his love of the subject. To be fair to the teacher her approach to learning is what the government wants. Sadly the government understands as much about education (and actually most other areas) as does that Bush in the photograph.

Posted on by bereavedandbeingasingleparent · 63 Comments

Spelling….

Some roads are straight and easy to navigate. Other roads are not….

A few years ago the U.K. Government changed the way children were taught and tested. To ensure that ‘children are better equipped for jobs a greater emphasis should be placed on spelling, grammar and punctuation’. As a result marks are now specifically set aside for these factor in exams. Labelled SPaG marking. It was argued that the previous inclusive educational approach was wrong.

The Government approach is to focus on a limited number of correctly spelt words. Let’s produce kids who can spell one word perfectly rather than have kids who can use an extended comprehension.

Where does this leave kids with dyslexia.?

Teaching Groups, Charities, Dyslexia Associations, Parenting Associations and Health Bodies objected. But what do they know….

Dyslexic Kids can apply for extra time in exams. They can apply for a scribe. They can apply to use a reading pen. They can apply to use a keyboard rather than pen. BUT.

They have to demonstrate a level of independence to gain access to the spelling, the grammar or the punctuation marks. If they can’t then the marks are not available to them.

Looking at our son’s case it probably means that when he takes his final exams if he opts for reasonable levels of assistance (as required under Equality Legislation) he will at best be able to access only 33% of the total SPaG marks available.

In my eyes this is wrong. But this is modern U.K. education policy.

Sadly it doesn’t stop there.

The Government decided to change the course content for Computing. Computing underpins everything now. The range of potential computing skills are endless. So many of our kids have passions and untapped skills here. The opportunities are boundless. Let kids tap into this. NO. The Government decided that the course should now focus on coding and structured programming.

Not often can I talk about a subject with anything other than guesswork, but computing I can get to amateur level. This is way beyond the dogmatic ideological buffoonery that underpins Government thinking. Why in God’s name have they picked the most uninspiring and regimented area to focus on. The approach seems to be let’s push out kids who can code rather than develop kids who can utilise the potential computers offer. Yes let kids have a basic grasp of coding then allow those who want to take it further the option to do so. I remember training in 3 programming languages – all becoming obsolete within 5 years.

AND yet again the Government – The Government which is on our side – have penalised kids with dyslexia. Coding and programming is built around specific commands and symbol patterns. Dyslexics struggle with this. So our son is stuck in a weekly computing lesson which focuses on programming. He flounders as he can’t spell the commands. His confidence gets battered. His struggles with spelling are cruelly exposed. His love for computing is fading. The school knows this but cannot change because it’s the set teaching method. Madness.

Sadly I could go on about other subjects and more Government interference. But the point has been made.

Education is so vital that it should not be left in the hands of our self absorbed and incompetent politicians. How about the politicians just focusing on screwing up Brexit and leaving education to the teachers, the parents, the area experts, the kids. In today’s language that probably gets me labelled as a dangerous socialist. A Traitor. Frankly I don’t care. What I care about is the kids going through our educational system. Clearly that’s something our leaders clearly can’t comprehend.

Posted on by bereavedandbeingasingleparent · 80 Comments

Hands in your pocket

The school review meeting wasn’t a load of fun. Polite but very serious. But one thing did make me smile. The night before our son had a bit of an anxiety attack. The source of the anxiety was school rules. Son had seen two kids given punishments for walking around with hands in their trouser pockets. It’s something he can do absentmindedly.

“Dad somedays I wish I was a tree with no hands and no pockets..”

Surely this can’t be the case.

So while I was waiting for the teacher to pick me up from school reception I asked the school administrator about the rule. She confirmed that it was an automatic negative for this heinous crime.

So for the next 10 minutes I watched the constant stream of humanity walk passed reception. I observed 4 rule breakers – hands clearly in pockets. Not a care in the world. All 4 being Teachers. One rule for all I suspect not……