Monday Monday Monday

Monday finishes off with a visit from Santa. It’s about the only event the village has. Raising money for charity. Raising smiles with children. Sorry for the poor photo.

However we never get a dull day.

Nice dog walk completed. Return of the strange yellow thing. Coffee made. Laptop opened. Work commenced. PHONE RINGS.

As Captain Jack Sparrow would say – “Bugger”

So ten minutes after opening the laptop I’m on the way to meet our son at the hospital. Accident at school and a hurt hand. Few x-rays and it’s a visit to the fracture clinic tomorrow.

Back home for some needed TLC for our son. Work day has turned into a marathon movie day. Can we get through the complete Pirates of the Caribbean series in one day. It’s odd watching the movies having now seen Johnny Depp live – playing guitar.

Lord knows when I’m going to get some work done. Maybe a few all night sessions. But in the scheme of things it doesn’t really matter. Now back to Captain Jack and the third movie.

Call from school

Friday was going to be a big work day. After that video Thursday was a write off. Friday was positive, Friday was going to be a big work catchup day. So taking no risks with unexpected grief reminders – a carefully selected range of cds was lined up. Work started.

Then the phone rings. The phone call parents dread from school:

“I’m sorry your son is not so good at the moment can you come and pick him up”

As a couple you then have that urgent exchange of calls or texts to decide who is best placed to pick up. Unfortunately as a single parent all you can do is sigh, switch off the laptop and head to school. Monday is now ‘manic work Monday”.

Luckily it was nothing too lasting. Anxiety leading to an upset stomach which is quickly remedied by Tomato Soup and the prospect of the weekend. We often forget how stressful school can be for kids. Added to that – Autism and schools are not natural bed fellows.

Schools often forget that they don’t really do that much to relieve this anxiety. I haven’t forgotten that national budget cuts restricts what schools can do. But surely progress can be made. Large parts of the school are quite old and pretty grim. Without doubt the grimmest location tend to be the toilets. They are awful. Dark, smelly, completely unwelcoming. His last School’s facilities were awful and as a result many of the kids refused to use them. According to our son he only used them once in 5 years. At his new School the toilets are equally Victorian. With the added ingredient that they are poorly monitored and are a hive of bullying.

IS THIS NOT 2018….

OR IS IT A PINK FLOYD VIDEO

Strange Yellow Thing

The morning started as has the last 5 days have – grey, wet and cold.

The school bus was missed yesterday morning – never a good sign. We slightly overslept, only by a few minutes but…. Sticking to the established routine is so important to our son. Routine is king. I tried to stick to the plan but just slightly quicker. It was never going to work. I could sense the tension building within him so we just went back to the usual routine. So we missed the bus. It’s not a disaster it’s only a 15 minute car journey to school. Plus it’s one less bus trip for him to deal with.

On the way back from school a very odd thing happened. The clouds parted and a strange yellow disk appeared in the sky. I don’t know what it was (remember this is Yorkshire) but it was lovely to see. With this being Yorkshire the strange yellow disk disappeared behind grey clouds thirty minutes later.

Update. Looking out into the pouring rain this morning – even too wet for the dog – I am confidently predicting the strange yellow disk has packed his bags and won’t be appearing here anytime soon.

Testing times

Our son’s school tests kids every couple of months (most schools do the same). Speaking with some of the other parents – most of the kids are getting stressed out over them. Maybe I’m old fashioned but these kids aren’t even teenagers yet.

My frustration is not only with the amount of testing, it’s with what is being tested. We currently focus on such a limited range of skills and are so inflexible on how the tests are operated. Not all kids are suited to the current testing environment.

I was talking to one parent whose child has really struggled to reach the set expected performance levels. However this child is brilliant. I’ve seen her paintings and cartoon sketches. Unfortunately we don’t have a test environment which allows her to demonstrate this brilliance. No government targets for painting.

Our son astounds me with his knowledge and understanding of history. He is scheduled to do a school test which is about the Battle of Hastings. He has a forensic knowledge in the area. Last night he spent two minutes explaining details of Bishop Odo who took part in the battle. The night before he explained in detail what William did after victory including how he persecuted the north. So if we could design a test environment so he could just talk for 30 minutes about the battle and then verbally answer detailed questions – then he could demonstrate his brilliance.

Problem is the test is to write a one page essay on the battle. Without help then he has no chance. Even with help he won’t be able to shine. This can’t be right. No government targets for developing autistic kids with dyslexia.

PLEASE PLEASE PLEASE CAN WE GIVE ALL KIDS THE CHANCE TO SHINE

I always thought I was pretty good on history. I tried to show this off to our son.

“William the Conqueror brought his army to the field in October 1066”

My so called knowledge was shot down in one line…

“Dad it was the 14th and he was not at that stage William the Conqueror. He was called William Duke of Normanby or sometimes William the Bastard because his mum was unmarried. The Conqueror was first referred to in around 1120, sorry I can’t be more precise”.

Words with school AGAIN

One of the more noticeable traits our son has becomes more apparent when he gets excited. When he gets excited he flaps his hands. It’s something he has always done. Flapping is seen as one of the potential early Autism signs. Technically it’s classed as Stimming. Stimming is short for Self-Stimulatory behaviour. In people with autism it often manifest itself as flapping, spinning, rocking or repetition of words. The exact reasons for it occurring is still not completely agreed upon. Could sometimes be about self calming, sometimes could be self regulation, could be something else. In our son’s case his Paediatrician thought it was helping control sensory overload.

Whatever the reason for the flapping the most important thing is our son’s view. He sees it as just part of his personality – who he is. As a result it happens and we accept it. For what’s it’s worth the Paediatrician has said that it’s best to view it as just one of those things and just leave it alone. He did say that if our son specifically wanted to try to stop it then he could try to arrange some specific therapy.

Over the years it’s never been an issue.

Now we come to school.

During a lesson, something happened which was really funny. As a result our son got excited and flapped a bit. The teacher went up to our son and told him sternly to stop that immediately. I wonder if the same teacher would have sternly told someone to stop biting their fingernails. Or twiddling a pencil.

DEEP BREATHS

When will people start embracing rather than trying to remove human differences.

I have told our son he didn’t do anything wrong at all. Hopefully he now thinks that it just shows the low level of training teachers receive currently in autism. Conversations have been had with the school. I have been assured that this won’t occur again – I’m not convinced. We move on.

Great Questions.

On a trip to Newcastle last weekend our son remarked

“I know that the river is beautiful at night but just imagine how stunning it would have been without humans”. “Do you think the world is a better place for having humans?”

This slightly took me aback as I has only asked him if he wanted pizza or a burger to eat on our way home….. It’s been week after week of questions that seem to have befuddled my limited reasoning powers.

“How do you think a plant cell first adapted to include Chloroplasts?”

“Do Alice Coopers friends call him Alice or his real name?”

“Why do kids laugh at people who can’t read but don’t seem to laugh at people who can’t do art or do maths?”

“Do you think the Doughnut Shaped universe theory is right?”

“Why can some people sing and some like you can’t sing – is it your body, a skill you learn or just luck?”

“Why do they keep saying those pesky kids in Scooby Doo when they must be older than you these days?”

“Why are there so many religions?”

“Rather than always trying to be good, would I get more help if I started to behave badly at school. If I did get more help would that not mean that I would have a better chance of improving?”

“Why are paper cuts so painful?”

“I have to paint a picture for Art homework, it has to be like one by Henri Rousseau, what is his style?”

“Why do we have to grow up?”

“Do you think Donald Trump gets his bodyguards to search for his golf balls?”

“How do we really know that the colour green is actually green, or it’s just a fault in the human eye?”

“In Spongebob why don’t the crabby patties ever get really wet being under the sea?”

“Did the Astronauts have to wipe their boots on a mat when they came back to the ship after a moon walk?”

“What’s your favourite Pokemon from each of the regions?”

“The Prime Minister is old. All the people helping her are old. Why are there never any young people helping. Leaving Europe effects the young as well. Is it because they wouldn’t agree with our view of the world?”

“Why is Dinosaur Train never on TV now, is it because they are having to redraw all the dinosaurs with feathers?”

“Who decides what a swear word is?”

“If Crocodiles survived the mass extinction why couldn’t some of the dinosaurs survive?”

“Why are schools made to be so unfriendly?”

“If some mountain ranges are rising up from earth movements does it mean somewhere else has to be getting lower?”

“Why after all those years of not winning a single thing and constantly letting you down, do you keep supporting that football team?”

“Do you think Stan Lee would rather go to Heaven or Valhalla?”

“What’s your favourite Batman bad guy excluding The Joker, Penguin, Riddler, Mr Freeze, Two Face, Bane and al Ghul?

“If I lived on a deserted island and I never met another person ever again, could I just forget that I have Aspergers and Dyslexia ?”

Even google couldn’t help me with some of those questions. As I’m writing this he has just stopped watching his tablet and asked:

“If we know so little about the universe, this man has just said less than 1%, how can scientists be so certain about things?”

Thankfully this was followed up by “have we got any ice cream in?” – I can answer that one.

Home help

Last week we had a really long family chat. We tried to take stock of the current position and what happens going forward. Our son ultimately decides what course of actions we take forward. I just wanted to make sure that I am providing the right support to back up his decisions. He views Aspergers as fundamentally just being about ‘his personality and who he is’. But he is so determined to find a way of overcoming his dyslexia. He describes dyslexia as his invisible disability.

The days of allowing his care program to be dictated by people who he doesn’t know or doesn’t trust have gone. He is absolutely clear that he will only work with people he trusts from now on. This puts a greater emphasis of home development work. We have agreed that each night we will spend 30 minutes working together specifically trying out new ideas which may help his reading. I have also had a conversation with school and told them I that I expect his homework levels to be reduced to take account of this home based work. They were not happy but it is happening!!!!

The first thing we are trying is something which was mentioned by the Paediatrician. He had seen some research that undertaking activities which worked both the eye and coordination at the same time had produced positive results with some dyslexics. In effect exercising his visual processing skills. When trying to read he has to spell out each letter and struggles recognising full words. The hope is that this type of visual processing exercise may improve letter and word recognition.

The first stage was to design some simple matrix tables (see below). The first was a number grid. After a bit of experimenting we went for italic as he found this the most visually appealing. The task was to read the grid while clapping. Then reading while clapping and stamping. Then reading in time with a counter. Then reading while bouncing a ball. As an added element of fun we have timed races. I struggle to use my hands when reading so he frequently wins. I strongly suspect that I am autistic – but that’s another story.

When we first started the exercise it was clear that he read the numbers left to right then when he came to the next line he read right to left. We did the same exercise with the letters grid and he did exactly the same. We then looked at a reading book and he did the same. Reading right to left is common and is the basis of many languages like Urdu. It is also not unheard of for someone to be dyslexic in one language but be able to read in another language which is read in a different direction. What appears to be less common is for someone to alternate reading left to right and right to left at the same time.

We agreed to see if we could train his brain just to read left to right. If anything it might take a bit of strain off his visual processing. So we went back to the numbers grid and tried the same activity but this time asking him to always read left to right. This was difficult but after a few days it’s becoming a bit easier.

Today we switched back to the letters grid and he has now started reading left to right automatically. Potentially this is progress.

For the next stage we are planing to add a bit more difficulty into the exercise by adding common words into the grid. Will report back on progress.

Grid 1

1 4 7 5 2 3 8 9 0 6

0 1 3 9 7 4 2 6 8 5

2 7 9 5 1 3 8 4 6 0

3 9 0 4 2 1 7 8 6 5

9 7 1 4 3 2 6 0 5 8

4 8 7 3 5 9 1 6 2 3

Grid 2

a d e f g b d t z x u

b h I r e w q a c l m

m b v t r y o p s d a

n o e d s h l k v b n

q u y t I p s f h u e I

g h t y o p f k q c b

h r y u I f h s e q n v

Grid 3

5 2 1 6 at 4 8 9 7 3

1 9 the 7 9 0 3 2 4

6 3 9 4 2 1 5 my 5

3 yes 2 1 4 8 9 0 1

sat 3 6 4 2 1 8 9 7

2 7 4 1 9 6 3 8 no 1

3 1 4 8 7 but 9 2 4

Very Slow Cooked chicken

Let’s not pull any punches – I’m a monumentally bad cook. There is no recipe that I can’t mess up. No appliance I can’t arc weld food to. No Kitchen is safe in my presence. I am like the Arch Poltergeist of the food world. As a result so many people have recommended getting a slow cooker, they are fool proof I am told. Well let’s see.

It was the usual school morning start. Drop a heavy dumbbell on my foot. Stand barefoot on a Lego figure. Wipe up another cat accident. Try to find the missing school PE sock. Trip over the dog and drop son’s breakfast over floor. Why has the school bag shrunk – currently as full as a parachute backpack. Try to find ingredients for Food Technology (son so helpfully informs me 2 minutes before we have to leave). All while convincing son that everything is cool and going strictly to plan.

A slow cooker is purchased, reassuringly I opted for the one which said ‘the easiest way to cook great food’. First recipe – chicken stew- it’s must be a winner. All I have to do is dump the ingredients in (which is fantastic given the morning chaos unfolding around me) and let it cook on the low setting for 6 hours. Leave it to cook while he’s at school and I am out – perfect. Even our son was unusually looking forward to some edible food for the first time in years (excluding pizza deliveries).

More of a rarity, as I pick up our son from school he talks about maybe even dipping some bread in the mouth watering stew. So we both excitedly enter the house waiting to enveloped by the intoxicating aroma of high end cuisine.

Nothing no smell. Must be the really good lid sealing in those mouth watering flavours. I wish….

“Dad it’s stone cold, you did switch it on”. Followed by “What a muppet”.

So that nights fine cuisine was tinned soup and bread. That was actually option 3. Option 2 was microwave risotto – unfortunately somebody forgot to rip a hole in the top of the packet and at 45 seconds it exploded.

So tonight’s fine cuisine will hopefully be cooked and hot sausage casserole. Yes it has been switched on.

Warriors

Just a quick post.

This morning our son really didn’t want to go to school today. At one stage he enquired about starting his gap year – now. Facing a science test about cells and he is really worried about having to read or spell words like cytoplasm. But he got on the bus. I remember thinking my little hero.

A couple of hours later I read a great post about another little warrior. Please check it out. Says it so much better than me.

Needless fear

Thespian Advice

First up apologies for yesterday’s school rant. Probably suffering from Toffee Appleitis. It was heart felt but probably did come across as a bit of a winging parent. I suspect it might not be my last moan but I will try to keep a lid on it for the post.

The Toffee Apple update was quite positive. I did manage to find one rather sad looking specimen which apparently was quite tasty. While he was at school I moved away from the high science of Toffee to the more accessible chocolate approach. Chocolate is so much easier than Toffee – it falls within my very limited cooking range.

Chocolate Apple – success. Then the success went to my head – chocolate dipping anything I could find. Grapes, strawberries, banana, pineapple and melon. At one stage we had chocolate spectacles – but that was just an unintentional fumble. With the exception of the glasses – all chocolate covered items happily consumed.

After the chocolate eating fest our son brought up school and in particular drama. Apparently the class had a drama test which consisted of reading a script. No reading help was provided. When I asked how he coped his response was

“I couldn’t read the words but I didn’t panic, I just remembered the advice you gave me about drama”

This worried me on two counts. One I can’t remember any such advice and secondly the only thing I’m worse at than cooking is the performing arts. My only two ventures into the performing arts during my life have hardly been inspiring.

1) At school my class was entered into a singing competition. My signing was so bad that the teacher told me to stand at the back and just mime. I remember how he put it “for gods sake don’t sing or were buggered”.

2) A bit further down my educational journey I “performed” in the year end play. That year it was Julius Caesar. I was given the role of a centurion with one job. Stand on a podium (chair) and shout “hail Caesar”. Unfortunately on the big night I got a tad excited. I managed to let out a bellowing “Haiiiiiiiiiii” as I feel backwards off the chair, pulling most of the back curtain down.

So with trepidation I asked my son exactly what advice I had given him.

“You told me that if I had to do any acting and I didn’t know what to do then you should pretend to be a famous actor. Pretend to be someone like Christopher Lee playing Dracula”. ### he once watched a documentary about Christopher Lee’s career when he was appearing in Lord of the Rings and loved the Dracula bit ####

“So I just pretended to be Dracula stalking round the stage not saying a word. I later found out that it was some romantic stuff I was supposed to read”.

I couldn’t get the image of this vampire like figure stalking round the stage when they were expecting something more akin to Laurence Olivier or Colin Firth. Seconds later we were both in tears of laughter.

So in summary I can’t rule out future blog moans but I can categorically rule out any form of thespian advice.