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.

Downsize

Do you think I should downsize? You didn’t know I had a decent size fish pond.

“dans mes rĂªves

I dread to think how much my house insurance would go up if I did live in a French chateau. I suspect my little hover mower would struggle a bit. The dog could do some serious digging here. Space and isolation would certainly not be a problem for our son.

Having a garden big enough to go for a long run would be fun. We could even be like Professor X and set up our own school here then we could tell the government to stuff off with its targets.

We were trying to do some work for our son’s end of year maths tests. Not one but two tests. It always fascinates me how his mind works. For example practicing some multiplications. I would write them down old school while he does them almost faultlessly in his head. How on earth can he do 55×23 or 78×33 in his head. That would be beyond me.

He can see numerical progression sequences so much quicker than I can. Working out ratios and percentages are easy for him. He can work out modes, medians and averages again in his head whereas I again have to write them down. This will cause him problems going forward in exams as he will need to show his workings.

Yet he just can’t process decimal points. Introduce a decimal point into the simplest of calculations and his onboard processor stops working. So for example 1897648+987985 can be done in his brain really quickly yet he is lost with 1.4+1.7. Similarly ask him to round up 14356965 to the nearest thousandth and it’s done instantly. Yet ask him to round 1.23 to one decimal place and again he is lost.

He’s got other black holes in maths. Apparently no clear rhyme or reason to these. A Clinical Psychologist referred to these as his Number Dyslexia. Another label which is not really understood. It wouldn’t be a problem if we lived in that French chateau but in our reality we will need to find a way of solving these riddles. It’s added to our to do list and we will crack on with them – at some stage. But first I need to go and clean my 1000 windows.

Trust

Birds are very trusting. Well they are in our garden and they were in my parents garden. Whatever you put out for them – they would just crack on eating it. I remember being told as a kid

“Don’t fall over when your feeding them because they will start on you next”

Maybe that’s why I was allowed to watch a certain Hitchcock movie soon after.

Son is the opposite. Need to confirm details like oven temperature, sell by dates, cooking times, fridge temperature, cleanliness of utensils before food is deemed safe to eat. Limited trust in food.

I remember as a kid when our family got its first ever microwave oven. It was the size of a small city. When unpacked it was time to test the beast. I was sent into the kitchen with a cup of cold water. I tried to explain what the buttons did but quickly realised my parents had legged it. The kitchen door slammed shut with Mum and Dad hid behind it. Safely behind the blast protection I was told to begin the process of warming the glass of water. Clearly to my parents this was on the same risk level as an exposed nuclear reactor core. Thinking about it if it had been that dangerous clearly I was the expendable one. Not sure Dad ever used the new cooking device. He had zero trust in the nuclear age.

All those years later and we still are talking trust.

  • School are trying to convince me that they are doing everything possible to help our son with his dyslexia.
  • The Council is trying to convince parents like me that they are providing a class leading Autism Support Service to all its children. Suppose that includes our son.
  • The Council is trying to convince me that it is a waste of time for our son to be seen by an Educational Psychologist as it won’t achieve anything meaningful which could be used to tailor his schooling.
  • The Paediatrician is trying to convince me that I should push for an Educational Psychologist to see our son as it will help tailor his schooling and come up with specific interventions to help him. It will also reduce the demand on his department.
  • The Health Service is trying to convince me that because our son is a low priority and doesn’t fall into a service which has been commissioned then he doesn’t need any specific support over the coming years.

We are expected to trust the professionals and follow their advice without questioning it. Clearly they know best. Clearly they only have the best interest of our son at heart. Finance and budgets don’t influence decisions. They will provide support and care at times to suit the kids not the professionals. What do we know – we are not trained. We are not professionals. Leave the care to the experts. A few years back I was naive and I believed this crap.

The looks you get when you do have the audacity to question or worse to say NO.

Don’t get me wrong this is not all professionals. You come across brilliant ones. But the funny thing is that they are often the ones who listen the most. The ones who push the idea that the kids and parents should take ownership of the care package.

So back to trust. Trust in the system. It is none existent. You have to question everything. Push for answers. Don’t be afraid to say NO. Ask for second opinions. AND when the inevitable brick wall hits

The ‘service is not available’, the ‘your child doesn’t meet the criteria’, the ‘forgotten about’ zone, the ‘just go along with the treatment’ train line.

Be prepared to fight. No guarantees of success but it’s worth it. The kids deserve it.

Tell me why

In my voice – Tell me why

  • My partner was taken from us when she was so young.
  • The system continually fails our son.
  • The Government can find billions to bribe other parties to keep it in power but can’t find the money to fund education support for the kids who need it.
  • I don’t sleep anymore.
  • They say the world is getting smaller yet I feel so isolated.
  • Chocolate has so many blooming calories.
  • Hair doesn’t like growing on my head yet it sprouts like an Amazonian Forest on the back of the my hands.
  • The cat continually finds a way into the wardrobe.
  • I can’t find any socks in this house.
  • They never made a Captain Scarlet movie.

In our son’s voice – Tell me why

  • My mum had to die.
  • Both my grannies had to die.
  • My hamster had to die.
  • My girl cat who was like a sister to me had to die.
  • I can’t read.
  • Some people think I am stupid just because I am autistic and dyslexic.
  • Shops have to be so busy.
  • Hazard is leaving Chelsea.
  • Do people have to kiss in films.
  • Marvel Movies are way better than DC Movies.
  • Most kids don’t like rock music.
  • Broccoli wasn’t deemed an inedible plant.
  • My Dad can’t cook.
  • In our dogs voice – Tell me why
    • I get shouted at for pinching socks.
      I get shouted at for digging holes.
      I get shouted at for eating garden tools.
      I get shouted at for eating garden furniture,
      I get shouted at for digging up plants.
      I get shouted at for burying stuff like socks.
      I get shouted at for pulling bits of the apple tree off.
      I get shouted at for escaping.
      I get shouted at for climbing in the hedge.
      I get shouted at for eating cat poo, cow poo, sheep poo.
      I get shouted at for pinching food.
      My best friend isn’t with us anymore. I know I am a dog but she was a really cool cat.

    In our boy cats voice – Tell me why

    • My sister isn’t with us anymore.

    • My best friend, the really lovely woman has gone. I miss siting on her lap.
    • I get shouted at for missing the cat litter by several feet.
    • I get really shouted at for missing the litter by so many feet I hit the wall.
    • I get shouted at for sitting in front of the TV when a movie is on.
    • I get shouted at for sneaking into the wardrobe and getting white hairs on all the black clothes.
    • I get shouted at for falling in hot plates of food.
    • I get shouted at for always tripping people up.
    • I get shouted at for sleeping on the laptop.
    • I get shouted at for sleeping on the toaster.

    In our gerbils voice – Tell me why

    • We don’t live in a toilet roll factory.

    Dilemmas

    The world is full of dilemmas and seemingly perplexing questions.

    • Sleep on your back or front
    • Tea or Coffee
    • Is Trump a criminal or political hero
    • To help the injured bird or leave it for the hungry predator
    • Football or Soccer
    • Is Brexit a good thing or stupid
    • Sunsets or Sunrises
    • Tomato Ketchup or Mayonnaise on Fries
    • Captain America or Ironman
    • Toblerone – best chocolate ever or a chocolate designed to do damage to the top of your mouth on every painful bite
    • Are we better people when at war or at peace
    • Is Boris Johnson a political genius and loveable rogue or is he a monumental bellend
    • Batman or Superman
    • Cats or Dogs
    • Yorkshire or Lancashire
    • Marmite on toast or put the marmite in the bin

    At the moment we are wrestling with our own dilemmas. Ones only we can figure out but currently with no clear answer.

    School is clearly not working for our son and yet homeschooling will significantly increase the risk of further social isolation. Both options have advantages but many pitfalls. Yesterday it was school, today it feels like homeschooling, tomorrow no idea.

    The longer he stays in school the risk increases of him being lost in the system. Not given the chance to find his true talents and skills. Forced into a model which is not designed for him.

    We could move to a better schooling area but financially that’s not really practicable. The close support open to us is limited. In fact it seems to diminish every time we look. My family is geographically spread and not near. The potential wider support infrastructure is very limited in our area. So again do we move but we can’t afford to.

    With the help of the internet I could deliver a viable and tailored teaching programme. And yet, and yet. I would have to commit fully to providing the education and with just one variable income that would be financial madness. The bills only just get paid now.

    And one final irony. Why do the most important dilemmas occur in life when you are at your most tired. Drained. Almost beyond rational thought. But at 2.31am I do have just enough processing power available to answer one question – that in fact Boris Johnson is a monumental bellend….Let’s see if I can answer some more dilemmas now.

    Questions Questions

    In life you get so many questions. Good ones, bad ones, taxing, insightful, bizarre, left field, rude and downright stupid. I often find one response covers most of them

    A big boy did it and ran away….

    Then you get the questions you field which relate to your kid(s). The questions involving Autism , Aspergers, Dyslexia , Dyspraxia, ADHD, Bereavement, behaviour…..The questions from family, friends, parents at the school gate, teachers, health professionals and other children. So many questions and so often not particularly helpful ones. As helpful as losing your car keys in a crop field.

    So let’s look at some of the questions we have encountered. I suspect this could end up rivalling War and Peace so I’m going to spilt this up into more easily digestible parts. So part one is the Autism and Aspergers questions. Here goes for some bizarre questioning….

    “Do you want us to have him eat his food by himself now he is Autistic?” – A Teacher

    As he is on the spectrum would you agree to the council being approached so they could assess the risk of self harm” – A Teacher

    I realise that his performance and behaviour is really good but have you considered a Special School as he had Aspergers” – A Teacher

    Are you sure he has Autism as he seems very normal and is not violent in anyway” – A Teaching Assistant

    We have another child who is autistic would it be ok if we sit them together as it will be good for them. They can become friends then.” – A Teaching Assistant

    “I recognise that he is very shy and doesn’t like speaking in front of others. But would it be ok if he gives a chat to to the class about being autistic. He can tell them what it’s like to be different. It will be great for his self esteem” – A Supply Teacher

    He seems very talkative for someone with Aspergers” – A Doctor

    He seems like he cares and shows emotions. That is so unusual for someone with Autism” – A Doctor

    He’s very likely to have self harm and suicidal tendencies as he grows up” – A Doctor

    Why are you bothering fighting for a diagnosis when we can’t do much for him. The diagnosis will just be a piece of paper.” A Doctor

    Shall I get a nurse to take him outside so we can talk about him without hurting his feelings” – A Doctor

    Is he gifted in music as many people with Aspergers are.” – A Nurse

    Have you seen the film Rainman. That’s all about autism.” – A Nurse

    Unfortunately you come across Professionals who are clearly living in a different age or are just so underprepared to deal with kids on the spectrum. Not acceptable but it happens.

    “My Son is having a party and I want to be inclusive so is it ok if I invite your son.” – A Parent

    Did he get it from the Vaccinations” – sadly more than one Parent

    Does this mean that he’s not allowed to fly” – A Parent

    It’s not so bad, they can be very happy and harmless really” – A Parent

    Are you going to ask School to not move him up this summer and keep him with the younger kids. Won’t he be happier with them” – A Parent

    Are you sure he is Autistic he is nothing like The Rainman” – A Parent

    At what age will he start to grow out of it” – A Parent

    Have you tried those drugs which cure it” – A Parent

    Will he ever be able to look after himself” – A Parent

    Because he’s autistic he won’t ever want friends will he” – A Parent

    Is that why he’s rubbish at sport” – A classmate

    Can I catch it off him” – A classmate

    I will finish off with one that made us laugh.

    Do you have to use an inhaler, my brother does and he’s like him because he has asthma” – A classmate

    About to do something unusual

    I’m going to do something very unusual for me. A first probably here.

    It’s time to praise school……

    Yes I give it a hard time most days – probably very justifiably. But here goes with some praise.

    It’s been very sunny and warm over the last few days. Doesn’t happen much in Yorkshire. Anyway one of the really great teachers (sadly one who happens to be leaving soon…) decided the kids in her class needed some fresh air rather than stuffy text books – so she sent them outside to enjoy the sun. Only bringing them in for a few minutes at the end to quickly run through a couple of learning points. Son said it made the rest of the school day so much less tiring and the behaviour in the class was improved. Big thumbs up from me on that one,

    The school has a compulsory extra hour of school every week. This is to allow work on additional non-curriculum teaching. For the last few months our son was in the Book Reading Club. A tremendous idea for a dyslexic. But now for the rest of the school year the subject has changed. Now it is Archeology. How cool is that. I really wanted it to be taught by someone like Indiana Jones with a sexy hat and whip

    Sorry Dad nothing like him. Looks like a teacher who doesn’t get out much.”

    Blood Red Sky

    “Dad its a long time since we had a properly red sunset. I can only remember seeing 3 blood red ones.”

    He’s right. We are lucky here. It’s a daft thing to say but we have a big sky here. Not much blocking it out. Well apart from Yorkshire Clag – that’s thick low cloud. When we get a clear sunset they are often stunning but very rarely blood red.

    But very occasionally we get one.

    I know that a red sky at night is a fisherman’s delight but I think it might be an omen. At the very least I would hope Dracula or the Hammer Horror movies were born from a blood red night. Just think what a nightmare it would have been if the Dracula or Hound of the Baskerville authors had come up with the idea looking at a sunset but finding that they were dyslexic. The stories may have been lost. How many great ideas have been messed up by not being able to write”

    Think of all the great stories that have been made by people with Dyslexia. You just have to find different ways of getting things done. Plus what happened if the Dracula author took one look at the red sky and said ‘That reminds me of a cricket ball I’m going to write about a famous cricketer.”

    After a puzzled look. What about if Stoker. You do know Stoker wrote Dracula. If Stoker had said that reminds me of a blood sucking chipmunk called Alvin. The first book would have been called Alvin Prince of Annoying Singing. That’s when you would have wished Stoker was dyslexic.”

    Can’t argue with that. Another thing I can’t complain about it he is now starting to find some humour in some of his greatest fears. That’s a step in the right direction. Now what’s the odds on a blood red sky tonight being serenaded by a signing rodent…

    Public Apology.

    Unfortunately the last few posts have been a tad unfair to a great performer. Picked on him a bit. I do like him a bit really. No not talking about Bono and U2 – not even scratched the surface with them yet. I’m talking about Alvin. I would like to apologise to him and all his brethren. Singing Rodents are welcome here. Not you Bono – you can bugger off…

    Restricted View

    Since the world changed things have become financially very tight. Two wages became one. That one wage was a full time steady one but it quickly became a part time zero hours contract. We have two financial positions. Close to the edge or veering towards the edge. The hope is that we can keep going until son has left school, is independent and I can return to a proper income. But the bottom line is our son will always come first the bankers come second.

    We don’t have many indulgences. Just can’t afford them.

    Our son has had it so tough. Aspergers, Dyslexia, ADHD, Dyspraxia, losing his mum, losing all his grandparents. The only thing that drives me is that I want to do everything possible to give him the best childhood.

    So yes we do have some indulgences.

    We pay for an annual pass to a Zoo. If you time it right you can get it heavily discounted.

    We pay for a couple of rock concerts a year. We always sit at the back and pay for the cheapest seats available.

    Twice a year he goes to see the WWE wrestling when they come to the UK. Again we opt for the tickets right at the back. It’s not great as the wrestlers appear that small it might as well be Lego Figure fighting. But not this time. We went to see it at the weekend. This time when I booked it I came across a couple of seats closer to the ring which had been heavily discounted due to a restricted view.

    Really that’s some restricted view. Great night for our son and at last close enough to actually see the wrestlers faces…

    So job done today got a happy boy.

    One extra bonus. On the way back to the car we watched a massive city fireworks display. Far too much for my knackered phone.

    A touch of yellow

    The Oilseed Crops are stunning at this time of year.

    Just a carpet of yellow.

    As we walk along the path I ponder the chances of being ambushed by a group of barbarians in giant banana costumes. Son wonders if this would be the perfect location for Pikachu to hide.

    As we walk along son suddenly asks

    Why do I have dyslexia?”

    Son already knows the answer but it’s vagueness, it’s lack of clarity doesn’t sit well with his way of thinking. You can’t give him a definite answer. All you can do is reassure him that Dyslexia has absolutely nothing to do with intelligence. Having Dyslexia does not mean your stupid. It just means you learn in different ways. You tell him all the wonderful people who are dyslexics. The wonderful careers, the unbelievable achievements. Dyslexia doesn’t stop you dreaming.

    • Albert Einstein
    • Stephen Hawking
    • At least 3 US Presidents
    • Walt Disney
    • Leonardo da Vinci
    • Muhammad Ali
    • Keira Knightley, Tom Cruise, Orlando Bloom, Jim Carrey
    • Ozzy
    • Whoopi Goldberg
    • Steven Spielberg, Guy Richie
    • Richard Branson

    I suddenly start signing the Beetles song ‘Yellow Submarine’.

    And John Lennon.

    We go back to silence and yellow.