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What works

Anxiety, sadness and fear. Three words which unfortunately are too often near the top of our household vocabulary. Along with fart, burnt food, turn the music UP, where’s the remote, sorry I forgot and Dad you Muppet.So what have we found that actually works for both of us. Here are some of the winners.

5,4,3,2,1

We have found that this technique is really good at taking the edge off panic attacks. It doesn’t work on any underlying problems but buys some time. At the first sign of increased anxiety:

Think of 5 things you can currently see,

Think of 4 things you can currently hear,

Think of 3 things you can currently touch,

Think of 2 things you can currently smell,

Now do 1 large breath.

The Sweetie Jar Oracle

If our son is going through a period viewing the world through unhappy filters we start the Sweetie Jar Oracle. Find a large clear jar and a bag of brightly coloured sweets. Not sure about the rest of the world but in the U.K. smarties, fruit pastilles or Skittles work well. Sort out say the red and yellow sweets. Then identify one of the colours as good and the other as bad. Then over a period of a few days, maybe a week start to fill the jar with the appropriate coloured sweet every time a good or bad thing happens. After a few days hopefully you will see more good sweets than bad sweets. This usually convinces our son that although bad things do happen, good stuff happens more frequently. You can then eat the sweets….

Good Memories Store

We have an old small suitcase which we use to store good memories in. It’s full of old photos and handwritten notes. Every time we remember a good memory I write it down and put in in the suitcase. When times are bad we can then dig out the memory store and hopefully receive an instant boost to the soul. Has the added advantage of making sure you don’t forget those all important wonderful moments in time.

YouTube

Just losing himself in a YouTube documentary works somedays. I remember one occasion when he had an awful day at school but after 45 minutes of YouTube watching he was a happy little bunny. Worryingly he had found solace in documentaries about Caligula. What happened to Peppa Pig…

Wheelbarrow Train of Pain

Talked about this in a previous post. It stops my sudden urge to punch the wall with frustration. Basically load up a wheelbarrow with heavy stuff then push it round the garden. The number of circuits depends on the severity of the frustration.

Lego

Found that building a Lego set really helps take our son’s mind off his anxieties. It’s also good for his fine motor skills. It’s often frustrating for me as it just reminds me that I never got round to buying the Star Wars Death Star Lego set. Now it would be cheaper to buy a real Ghostbusters Proton Pack and get Bill Murray to personally deliver it to us.

Trampoline

Almost everyday on his return from school our son heads for his trampoline. 20 minutes later many of the frustrations of the day are put to the back of his mind.

Late night dog walking

Walking the dog never really helped our son. He was often too concerned about bumping into others. We would be having a happy conversation but suddenly someone would appear on his radar and he would be lost to anxious social thoughts. Almost by chance we then found the delights of night time dog walking. At night no one is about in our village. We have the fields and lanes to ourselves. Now it has become an excellent stress reliever. We frequently use the walks to plan out in detail the next days schedule.

Bad things league table

Every so often we run the bad things league table. We both list all the things worrying us. We then work together to rank them in order of how much pain they are causing us. Points are awarded for the severity of the issue, it’s frequency and how difficult it is to solve. It quickly identifies the stuff we need to focus on or prepare for. Because it’s done as a league table our son finds it easy to talk about and work with. For the issue which is the league winner we then spend a few minutes working out a couple of actions which might help knock it off its top spot for the next league table.

***********************

One of the activists 100% guaranteed to raise our spirits will feature in the next post…

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Progress?

“Dad how do you spell Transylvania, I am trying to find a picture of Dracula and his castle”

Our son frequently asks how to spell words when he is using his iPad. As he tries to type out the words which I have attempted to spell the hope is that it will help with his Dyslexia. He is trying to move away from just using the iPads speech recognition app. In this vampire case we had an issue with either my spelling (most likely) or our son’s typing.

“Dad that doesn’t look like Dracula or his castle. It’s a man with make up wearing a very short skirt.”

Yes that was an interesting conversation we had about a word sounding a bit like Transylvania.

We have continued to work at home on our son’s dyslexia. It’s his biggest concern and causes him so much stress. However it’s a constant balancing act as he gets so tired at school. I want him to have time to play and relax. But when we do work we have tried a number of techniques. I talked about some of these in an earlier post

https://bereavedsingledad.blog/2018/11/14/home-help/

Maybe, just maybe we are starting to see some progress. He is starting to recognise a wider range of words (although it takes time). Increasingly some of the more common words are starting to be recognised instantly. This is real progress. He is now starting to read Graphic Novels without the help of me or a reading pen. He is using the pictures, the words he can recognise and trying to figure out the words he can’t recognise. He can just about follow the story now. Hound of the Baskervilles is his favourite graphic novel.

As long as he is up for the challenge we will continue to push. Learning to overcome dyslexia does feel like the search for the Holy Grail some days. But at least we now have some leads. Maybe we have started to narrow down the search zone. Let’s hope so.

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Dad sit down

Today was supposed to be a full on work day. But again the Laptop had other ideas. Clearly it was an update day. Luckily my old tablet came to the rescue. A slow rescue but it was a rescue. I did find a use for my laptop. As it updated it got warm and a nice warm thing is too much for a dog to resist. So my laptop is now an expensive comfort blanket to sleep on.

When our son arrived back from school he was smiling. One of those smiles.

“Dad sit down”

No it’s ok

“Dad no I think you should sit down”

Ok I’m sat down, go on hit me with it.

“Well I tried doing the work with my left hand. It was bad. Anyway for the Games Lesson I was sent to a teachers room. I was told that I could do my homework. I told the teacher that I had no homework which needed doing. So she said I should just get a book from the shelf or do something educational on the iPad. I just sat and tried to play Crossy Roads for an hour. I beat your record.”

Well that wasn’t too bad, maybe next time find something rather than a game to do. Certainly don’t beat your dads best score…

“That’s not all. During one of the lessons I banged my right hand on the desk. It really hurt. But the teacher just told me to carry on working”

That’s not good. I’m going to speak to the Head about that.

“Not finished yet Dad. They have decided which options all the kids are doing for the next term. I was told that I couldn’t do the option I selected because of my hand so they told me that I have to do another one. They have given me the Book Reading class. Do you think they have forgotten I’m dyslexic.”

The Book Reading Class for a dyslexic. You couldn’t make it up.

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Countries gone mad

“Dad if we won the lottery could we buy a deserted island and live there?

It’s kinda sad that an 11 year old thinks that way. But I fully understand why and YES I would jump at the chance. I remember a time when I loved my country. Those days have sadly gone. Like many folk from Yorkshire we would happily declare independence. York becoming a capital city sounds cool. The national dish could be the Yorkshire Pudding. Our national sports would be cricket and being grumpy. The national animal would be the Ferret. Instead of having a nuclear deterrent we could threaten people with our rhubarb sticks.

You might think this is daft but trust me this is off the scale sensibility compared to the stupidity of modern Britain. Nothing sums up the state of the union better than just one single news story. Given all the potentially catastrophic events circulating around us (and there are many) – the attention of the media and a good proportion of the population has been on …… the horror of a bakery introducing a vegan sausage roll across its 900 stores. The likes of Piers Morgan (one of the not funny loonies and self pronounced TV Star) went into meltdown saying things like “Nobody was waiting for a vegan bloody sausage you PC ravaged clowns”. The news story is everywhere, you just can’t get away from it. I use the term news story very loosely.

I waited with anticipation for our son to return. He would cheer me up, bring much needed sensibility to my world. Unfortunately not this time.

“Dad the school want me to either write left handed or type left handed until my right hand gets better, that includes trying to do exams with my weak hand. I told them that I struggle to coordinate my left hand and that’s the reason I can’t tie knots. Told them that the Doctor was trying to help me with it but the teacher said I just had to do it”

“Dad did you complain about the behaviour in our bottom class”

Yes….

“Well they did something”

Please let it be something positive

“They moved a really well behaved girl up a set because she was struggling with the behaviour in our class and they moved a really naughty boy in to replace her. It was a lot worse today”

Only thing left is to go and buy a lottery ticket. That remote island is calling. Anybody fancy joining us.

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York is not the end of the story

It only takes us 30 minutes to drive into our closest city, the beautiful York. We are so fortunate to live so close to such an historic city. Such a rich pedigree.

  • It was founded by the Romans in 71AD,
  • The Emperor Septimus Severus ruled the entire Roman Empire from York for 2 years,
  • Constantine The Great was proclaimed Roman Emperor in York,
  • York was captured by the Vikings and named Jorvik,
  • Guy Fawkes (remember remember the fifth of November) was born in York,
  • York Minster is one of the worlds largest Cathedrals and took 250 years to build. It is the largest Gothic Cathedral in Northern Europe,

  • The Shambles is the best preserved ancient retail street in Europe dating back before 1086,

  • Dick Turpin the famous Highwayman was executed in York,
  • It has 3 miles of ancient City Walls still intact,

  • It is regarded as one of the worlds most haunted cities with over 500 recorded ghosts,
  • It has the worlds largest Railway Museum,
  • While other Northern British Cities built their wealth on coal, steel and textiles – York made it on Chocolate and Sweets. Rowntree’s and Terrys.

That was supposed to be the end of the post. Trust me York is worth a visit. Basically it’s a really cool City. Especially for a young kid with aspergers whose thirst for facts just keeps growing. He just laps up the facts. When I started writing this post I asked our son to supply me with the information. I completely trust his memory and haven’t bothered to double check the facts.

So it’s so upsetting when he came out with the following Statement a couple of hours later:

“I don’t want to be stupid, I would love to be clever one day”

So off we went for another late night dog walk. I try to provide reassurance. Try to build up his confidence and restore his faith in his dreams. But it often feels like a short term fix. Applying a temporary bandage to the wound. A bandage only protects the wound it doesn’t treat it. As Extreme would sing – I need to find more than words. I need to raise my game…..

Posted on by bereavedandbeingasingleparent · 49 Comments

Sleepwalking

New Years Day brought the traditional trip to the Yorkshire Wildlife Park. It was a wonderful few hours – more of that in the next post.

On our return things seemed fine. Then steadily things started to deteriorate and eventually we had a full on anxiety vortex. Consuming so much energy and hope.

Our son started to think again about school. Like me he often tries to overthink problems. Visualise potential outcomes. And in a similar way to Dr Strange when asked by Ironman about the millions of potential scenarios to stop Thanos – “he could only find one option which had a chance of success”. In our Son’s analysis he could only see one option with a chance of success – leaving school as a solution to his anxieties.

  • Teachers who don’t understand him
  • Falling further behind in reading – he realises that although he is making progress this is not catch up progress rather this is at best slowing the widening gap
  • Friendships
  • Low school expectations
  • Little help
  • Sensory overload at school – too much noise, too many people
  • Too much homework
  • Constant fear of getting negative comments and falling foul of the penalty system. Even something like forgetting to button up your top button or forgetting to bring in your planner producing automatic penalties.
  • A school timetable which brings tight deadlines and logistics pressures to someone with Aspergers.
  • In a disruptive class
  • And on and on …..

Again today I couldn’t find the healing words. Just couldn’t stem the raging anxiety vortex. The vortex doesn’t just suck our son’s energy it feeds on mine to. Increasingly tired. Feeling broken. Mind keeps crashing back to those 6 weeks when I lost my mum and then my partner.

We try to get some sleep but the vortex continues to rage and our son is beyond sleep.

“Dad we need to do something, anything”.

Come on let’s take the dog for a walk.

“But I’m in my pyjamas and it’s nighttime”

Get changed quickly then.

Ten minutes later at 10.50pm we are walking the dog in the pitch black with one cheap torch to guide us.

The dark, the quiet, the spookiness – whatever the reason but suddenly the anxiety vortex is calmed.

Talk is now about the things we really wanted but never got as a kid. The things we love and hate about England. Favourite foods. Ghost stories.

Hopefully for one night our son is ok. He is asleep and hopefully has a good night. We dust ourselves down and go again tomorrow.

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Top Cat Trumps

Our son has always loved Top Trumps. It’s the same ritual every time. Before we play he loves to line the cards up in order for each of the categories. Clearly the girl cat is not a fan of straight card lines. Apart from the cat the other thing which frustrates our son with the game is that he has to rely on me to read out the text on each card.

We continue to try and work together on our son’s dyslexia. Some progress is being made. Although he still struggles in general he now can just about spell the player names from his favourite football team. He can spell my teams player names as well. ‘Loser’ covers that one.

But for all the progress he still can’t read the books he is so desperate to enjoy. This is made worse when he hears other kids talking about the stuff they have read. So I have bought him a reading pen. Basically it’s a pen shaped scanner with a headphone. It reads out scanned text. He has used them sporadically at school and they do give him a sense of independence.

We have opted for the C-Pen Exam Reader. Will report back on its performance. However today a very happy boy enjoyed reading a comic by himself. Plus the scanner works on Top Trump Cards. The signs are good.

Jelly Bean Challenge: How many ScoobyDoo movies and episodes have been made?

Different sites have different numbers but going to use these as our marking scheme

Shows (not including cross overs and stuff not including Scoobie) – 406

Films – 39

Specials – 11

Total about 456

My guess was 350. Son’s guess was 399. So again I visited the Jelly Bean Lounge. This time no bullet in the chamber – lucky to select normal apple flavour. However due to earlier attempted cheating I was forced to select a second bean. This time I can confirm blood flavour is revolting.

The next challenge was set by a random question setter we have found on the internet. The question is how many types of poisonous snakes live in Australia. Apparently the answer “too many” is not specific enough.

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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”.

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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

Posted on by bereavedandbeingasingleparent · 48 Comments

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.