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 rêves

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.

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.

What do you see

What do you see?

Well Dad I see a fox on a motorbike crashing into an alien while being chased by seahorses.”

That’s better than my Lego Ninjago Ghost Warriors playing cricket….

Lying on the ground seeing what pictures the clouds can paint. It was always a favourite of mine as a kid and it’s the same with our son. I’m pleased he still enjoys the game. It’s good to exercise the imagination every so often. The best thing it’s free. Unfortunately in Yorkshire it’s often just a plain grey sheet we can see.

In Nursery and Primary school they did provide the kids with a platform to dream and play. To let their minds fly. Secondary school is different. Suddenly it’s all change. No play, no freedom, no room to imagine. The lucky few if they can act or sing or dance or play an instrument can get into the school performing scene. For the rest it’s just facts and rules for them. 100% focused on exams at 16. Nothing else matters.

Is that really in the best interests of our kids. Or is it just about feeding the system. Justifying the Government Target Policy. I think we know the answer to this.

So back to the clouds. What do we see now. That big cloud looks like a hippo at a watering hole.

“I’m just seeing something big. Something very big. I’m seeing my dads belly. That will block the sun out for days…”

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.

    In the Deep Dark Woods

    A mouse took a stroll through the deep dark wood.

    Our son adored the Gruffalo story. I think our son had all of Julia Donaldson books. We loved reading them to him, that’s what parenting should be about. Not the anxieties, the stress, the frustration, the heartbreak.

    Walking through this deep dark wood took us back to that golden age. Fairytales and colouring books. Toy cars and Teddy Bears. Dragons and magic. Thomas the Tank Engine, Dora the Explorer and Iggle Piggle. When we were a team of 3. Golden Years.

    But time marches on…

    Son gets older. Fairytales replaced with Manga. Colouring books replaced with an iPad. Toy cars replaced with FIFA 19. Teddy Bears assigned to the shelves. Dragons upgraded to Transformers. Magic being drummed out of him by school. Thomas, Dora and Iggle now Assembled into Thor, Black Widow and Ironman. A team of three assigned to memories. The Golden Years now the Anxiety Times.

    We walk further into the deep dark wood. Let’s hope it’s magic returns and takes us to a different world. One where anxiety is vanquished, dreams flourish and life is enriching.

    The mouse found a nut and the nut was good.

    Tree or not to be

    So did we spend the day under a tree or was son sat at his school desk?

    NEITHER…..

    After much soul searching and reality checking son went out at 8am to catch the school bus. He was certainly tired. With the school worries he hardly slept at all. Again not a great way to start an enriching learning day.

    After drinking two of the darkest, meanest and strongest coffees ever conjured up I was almost ready to roll. A quick hoover and set a washing load off. This week our possessed washing machine is only washing on the delicates setting. The delicate setting and arc welded grass stains are not a great combo. Anyway its time to pile into work and immediately…. the phone rings …. school.

    Your son has had a little accident in his first lesson. We have ice packed his thumb and wrist but it’s badly swollen. Can you come and pick him up. Probably need to take him to the hospital.

    It never ends. It really never ends.

    An hour later we are sat in the hospital. Given the amount of broken bodies and unhappy souls in the waiting room it appears the Hulk has paid a visit to our local town this morning – and clearly he was in a mood to smash. Yesterday’s dream of spending the day under a tree transpired to be 4 hours in a clearly overstretched hospital.

    Now we are home with hopefully no bones broken this time but with ligament damage to his hand. Hopefully it’s just a few weeks of painkillers and ice packs. At last we have a use for that packet of frozen French Beans.

    So we start again. A painful hand. Worries of tomorrow’s potential school day already kicking in. Need to revise for an end of year test.

    Yet son secretly hoping swelling IS TOO BAD for school tomorrow. Dreamy thoughts about that tree. Bugger the revision let him watch Marvel.

    If we had only just opted to sit under the tree this morning….

    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.

    I’ve got my eye on you

    Currently we have 11 very wise sages (now 12) who want to be our new Prime Minister. Aptly my spell checker wants to change wise sages to sausages. Apart from Brexit what do they offer. No idea. All they talk about is Brexit. They play a game. Remember that guessing game. I will name that song in 10 seconds. Well I will name it in 9 seconds. I can name it in 8 seconds…. Well they are doing that with Brexit. I can get us out by December. Well I will get us out by November. Boris will get us out be October… Apart from Brexit we don’t hear much else. The chap who looks after the police for months he has been saying rising crime levels has nothing to do with resource cuts … well now if he becomes PM apparently he will give them more money because crime levels are rising. Figure that one out.

    Anyway we don’t get a say in the new Prime Minister. Why should we, we only live here and pay our taxes. Basically the 330 Conservative MPs (the ones who have demonstrated a complete lack of any idea how to get us out of this mess) get the first go. If they can’t do something resembling Julius Caesar and his last night comeuppance then we go to stage 2. The 120000 Conservative Party Members then get a vote. So bugger the other 69,804,206 good people. So while the lucky few indulge themselves the rest of us watch the country fall apart.

    My child is autistic. He wants to be like the other kids. He wants to go to school to learn. A Mainstream School is the best place for him to do that. But to do that he needs some additional support. Not asking for the world just a bit more support here and there. But the government and the council have cut the Special Needs Funding. We have been waiting 2 years to see a specialist. Our school won’t offer him a place. The council has cut his transport service. He’s been at home for months and now I’m told the only two options are a special school miles away or no schooling at all.

    Not me another parent on the radio at the weekend. Over 1 million kids in England have some form of Special Educational Need. Yet Government policy is to ignore them. Assign them to the scrap heap. See them as an easy budget savings target. To focus on our son for a few seconds

    • Dyslexia Support – none
    • Aspergers Educational Support – some additional funding secured but this has to be used to pay for some additional non teaching support for the whole school and not tailored to his needs
    • Aspergers Health Support – did secure access to counselling support but due to cut backs he is now seen as a low priority and that support has dried up
    • Bereavement support – a couple of pamphlets and still on the waiting list – that’s coming up for 3 years now

    The government principle appears to be it’s not a problem for the us, it’s not our job, it’s the parents job so just own it. So while the lucky few get to play a fun Machiavellian lets pick a leader game – Rome Burns for many. When we get a new leader – nothing will change. We might even pour some more petrol on the flames.

    I really don’t know what the answer is. I don’t see things changing for the better. For the rest of our sons school years it is going to be a constant struggle. We will have to do our best and see what happens. Fighting our case. Trying to make our voices heard. Keeping our eyes on our so called leaders.

    Maybe it’s time for the Gerbils to Assemble.