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”.

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

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.

It is still runny

Over the last couple of days our son has been even more disillusioned with school. School is still not being proactive which any support – he has to ask for help rather than have it incorporated into the teaching program. Some of the kids poke fun at him when he has to out his hand up for help. To make things worse now when he does ask for help the Teaching Assistant now ends the help by saying “now I’ve helped you what do you say”. Every single time our son has to thank the Teaching Assistant. Now I try to stress the importance of being polite but in this case….. From the sound of it the other kids are not asked to say thank you when they put their hand up for help – just our son when he needs some text reading out. Why single out the dyslexic child. Surely the Teaching Assistant can see that the kids poke even more fun when he says thank you.

Maybe it just my tired state anyway…

Last night to try and cheer him up I asked what might help make him happier. The answer – Toffee Apples.

So we set off to the local shop to find they had sold out. Only one option – make them myself – surely it can’t be that difficult. Silly old sausage.

First attempt (following recipe to the letter) would not set.

Next attempt – increase the temperature – even more runny, will not set.

Another attempt – decrease the temperature – annoyingly still as runny, will not set.

Yet another attempt – try a different recipe – same runny result.

Starting to lose patience attempt – increase amount of syrup – no improvement

Really annoyed attempt – increase amount of sugar – no change

The I’ve been doing this for hours now and son has gone to bed attempt – to tired to remember what I tried – this time I arc welded the ingredients to the pan.

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

So my son set off to school now determined not to ask for any help at all. But at least he has the prospect of toffee apples. I promised him that I was heading to the city and would go round every single shop until I found them.

Let’s fly

We took the dog for a walk a few days ago. We came across these wonderful berries. We watched for a few minutes while various birds came and picked at them. After a while our son said

“In the future I wish I would have had the chance to learn to fly. Sometimes being different hurts”.

I was immediately reminded of a little story the Paediatrician had told me.

The Paediatrician worked with someone who was diagnosed with Aspergers, Dyslexia and Dyspraxia. That person wanted to become a pilot but was told that they couldn’t. One by one the obstacles were overcome. With a lot of dedication and plenty of desire to learn from the setbacks, flying lessons were eventually started. One of the biggest obstacles was the prescribed medication they were taking. The Paediatrician eventually found a medication programme that complied with flying rules. After training and much patience that person got the pilot licence and can now fly.

After I had told our son this story he just smiled and said

“Sometimes it’s good to dream”.

Probably

One of the most frustrating thing about autism is that nothing seems to be certain. You can say the same about Dyslexia, Dyspraxia and ADHD. The stock reply to questions seems to be “probably”. It feels a bit like that old beer advert “Carlsberg, probably the best lager in the world ”

  • Is Autism hereditary – probably
  • Are environmental impacts associated with Autism – probably
  • Are Autism and Dyspraxia linked – probably
  • Will the behavioural aspects of Aspergers become more pronounced as he gets older – probably
  • Is his Dyslexia linked to his Aspergers – probably
  • Is ADHD linked to Aspergers – probably
  • Will a coach or therapist help with Autism – probably
  • Is a main stream education the best option – probably
  • Could going to a special school help – probably
  • Would home education be more suited – probably
  • Will the loss of his mum have a long term impact on his Aspergers – probably
  • Will he get any specialist bereavement counselling – probably
  • Would educational psychologist be able to provide a tailored educational programme for our son – probably
  • Will an educational psychologist assess our son – probably
  • Could medication help – probably
  • Could medication make it worse – probably
  • Is Aspergers and Sleep Disorders linked – probably
  • Could the use of a reading Scanning pen help with his Dyslexia – probably
  • Could Occupational Therapy help with Dyslexia – probably
  • Could Speech Therapy help with Dyslexia – probably
  • Could the use of a reading scanning pen hinder any potential reading improvements – probably
  • Will the use of coloured lenses help with Dyslexia – probably
  • Have we now ruled out that coloured lenses will not help – probably
  • Will my son get any additional help during his secondary school life – probably
  • Are we trying every available route to try and unlock his full potential- probably

Probably, probably, probably….

Apart from the definite diagnosis everything else seems to have been on a probably basis. That’s frustrating for a parent as all you want to do is try and find the best course of action for your child. It’s more frustrating for the child as he or she tries to come to terms with life and the future.

But one thing is not probably, it’s not maybe, it’s definitely. When your child has had a bad day at school. When the parent is crying inside with the frustration of not being able to take your child’s sadness and anxiety away. When you need a lift.

The pets never let you down. They are our Ghostbusters our Captain America. Guaranteed to save the day and lift the spirits. They don’t need a proton pack or a shield. Just a few cushions will do the job. What a hero. Son and Dad happy again – probably for the rest of the day.

Words of Wisdom

You’re only given a spark of madness. You mustn’t lose it” – Robin Williams

For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do” – Chris Packham

You’re an interesting species. An interesting mix. You’re capable of such beautiful dreams, and such horrible nightmares. You feel so lost, so cut off, so alone, only you’re not. See, in all our searching, the only thing we’ve found that makes the emptiness bearable, is each other” – Carl Sagan

“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength” – Dalai Lama

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village” – Elaine Hall

It’s so much darker when a light goes out than it would have been if it had never shone” – John Steinbeck

Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim“- Vicki Harrison

You are allowed to feel messed up and inside out. It doesn’t mean you’re defective – it just means you’re human.” – David Mitchell

We’re out of our comfort zones with depression. I certainly was and whenever I have bad days now I speak to someone to get it off my chest. I have no shame telling that and that’s why I’m here today” – Ricky Hatton

Once you choose hope, anything is possible.Christopher Reeve

I didn’t succeed despite my dyslexia, but because of it. It wasn’t my deficit, but my advantage. Although there are neurological trade-offs that require that I work creatively/smarter in reading, writing and speaking. I would never wish to be any other way than my awesome self” – Scott Sonnon (World Champion in Martial Arts)

There is a time to live, a time to die, a time to laugh, and at no time are the three of them very far apart” – Spike Milligan

Life is too short to do the things you don’t love doing” – Bruce Dickinson

“When you change the way you look at things, the things you look at change” – Wayne Dyer

A dog is the only thing on earth that loves you more than he loves himself.” – Josh Billings

Cats are smarter than dogs. You can’t get eight cats to pull a sled through snow” – Jeff Valdez

The inner machinations of my mind are an enigma” – Patrick from Spongebob

“Bums to big” – Our son on why the Dodo couldn’t fly. Probably explains why I can’t fly as well.

Human Nature

Listening to David Bowie on the car stereo while driving into the local city. One hour earlier a conversation with the school convinces me that the they are not going to do any work on his Dyslexia. So it’s a hastily arranged meeting with the university to find out what testing and support they can offer. ‘Heroes’ blasts out from the speakers. Then I drive past a house. Not any old house, it’s a house that the two of us looked at 18 years ago. Suddenly I’m taken back to a different world. One which is full of dreams and hopes. Hopes of starting a family, maybe 3 kids. Dreams of spending a life together with the my sole mate. The most honest, calming, reassuring person I had ever met. Someone whose intrinsic goodness was the perfect anchor for my turbulent life. A world which was both exciting and happy.

Then suddenly I’m back in the real world. A chap who looks at least 90 swings his motorised wheelchair off the path and into the road. I brake as does the bus on the other side of the road. As the old chap drives serenely across the road he majestically flicks a v-sign to me and a middle finger to the bus. And with one surprisingly quick flick of the hand my underlying faith in human nature is restored…

Things get far worse

Another meeting with school and again more promises from them. I hope this time things start to move forward. But I do worry that they don’t have a plan, maybe they don’t really get the implications of an Aspergers and Dyslexia diagnosis. Again my heart goes out to our son. When the teacher said that he had made quite a few new friends, our son replied:

“If you include the kids who are forced to sit next to me in the classes, then yes I have made friends. If you include kids who want to talk to me then the answer is no”

I really don’t know what else I can say to him. I can’t think of any further advice I can offer him at the moment. All I can do is try to take his mind off things for a while. One sure fire ‘take your mind off bad stuff’ area is OUR PETS. He particularly loved this new pet incident.

Clearly the pet crime situation is worse than first feared. The pets are the one thing guaranteed to bring a smile back to our son’s face. Maybe my primary job is to just make him happy. Following on from the recent pants incident there is evidence of pet collusion. After unloading a clothes wash I dropped a sock. Within a nanosecond the pup had grabbed it and was belting round the house. By the time I had caught up with him, no sock could be found. I searched everywhere but absolutely no sign. Then I saw the girl cat slowly walking into the garden carrying the sock. She calmly dropped the sock onto one of our molehills, before strolling back in.

So clearly the girl cat and puppy are in collusion. But is the mole part of this crime gang or was this just a poor attempt to frame him. My son thinks it’s a framing job. But more importantly is made our son smile again.

Another Brick in the ….

So completes another grisly school day. School still not putting any learning support in. The school approach feels a bit like:

He is on the autistic spectrum and he is dyslexic.

He is struggling a bit with our set programme.

We won’t consider alternative approaches.

Let’s find what seem to be the most inappropriate teaching approaches to use with a dyslexic/aspergers child and let’s see what happens when we build them into his school day.

Clearly he is low attainment as he is struggling to read text and his handwriting is quite poor.

But it’s ok because he is really well behaved so he is fine going through the motions in bottom set and he’s not the lowest attaining pupil in the class. Maybe he will make a friend or two during these five years.

I really think Pink Floyd got it right with Another Brick in the Wall.

We dust ourselves down and go again tomorrow. Should be a good one as our son has to do a spelling test. Not sure I would do to well with words like “connotations” and “assimilation “. That will really help his self esteem – not.

One thought keeps nagging away at me. I’m not prepared to let this continue for another 5 years. But what to do? Keep plugging away with this school. Try our luck with another school. Or maybe just maybe home educate.