ADHD and Aspergers

Beckies Mental Mess this week has been doing a great job of raising awareness about (ADHD) Attention Deficit Hyperactive Disorder. I’ve just read Rory’s words which explain so well what it’s like to live with ADHD.

From here in this quiet part of Yorkshire ADHD is very much part of our life. It’s now officially part of our sons diagnosis. But it feels very much like a junior version. During the long and ever so frustrating diagnostic process which he went through ADHD was an after thought. It was missed. Never mentioned. Everything was lumped into Aspergers and Dyspraxia.

Then our Paediatrician changed. In his first meeting with our Son he genuinely seemed surprised that he could find no mention of ADHD on the records. A few weeks later it was added to the diagnosis. Why was it missed?

We where made aware that Aspergers in most cases goes hand in hand with other conditions. Everything seems to merge together to give a unique set of symptoms and personality traits. It is often difficult to unpick the individual conditions. Generally Aspergers and Autism are just used as overriding terms to cover a wide and complex set of interrelated issues. In our sons case ADHD was just missed. A specialist went through the original symptoms list. Of the 16 original listed symptoms which were defined as Aspergers related 7 were later changed to ADHD.

As soon as ADHD was on the medical record we were offered medication. Interestingly although our Sons the symptoms had not changed at all suddenly the addition of four letters prompted the option of drugs. We declined. Or should I say Son declined. In his words

ADHD hasn’t changed me. I’m still the same person with Aspergers. It’s just who I am.

Since we declined medication ADHD has never been specifically mentioned again by our Doctors. They have continued to offer behavioural therapy to try and ease the young Aspergers kid into this strange old world. Due to Government cut backs the therapy is becoming increasingly sporadic. Once someone gets past a certain age the health support basically dries up. But at least something happened. From an Education point of view basically no school interventions have occurred. No assessment of educational impact has been carried out. It’s the standard education package for all regardless of any specific needs. It’s so much easier to bracket individual kids as low attainment.

This is the shocking fact in education today. Certainly here in England. Specific educational help to those with a learning disability – some prefer to call it a learning disadvantage – is denied to too many kids in our society. Effectively they are seen as an expensive drain on resources. So much easier to write them off. How do we explain that to our kids. How as a society have we got education so wrong. We need to keep shouting as one day those in charge will listen.

Red Sky in the morning….

Red Sky at night …. fisherman’s delight. Red Sky in the morning …. fisherman’s warning.

Yes it works.

A routine dental appointment ended with me trying to stem blood from the mouth for 4 hours. That’s a good start. Especially as I’m one of those odd souls who is fine with blood as long as it’s not mine….

Then school struck again….

Son had been looking forward to getting his school award from the celebration evening. That’s all changed now.

I don’t want to go. I REALLY don’t want to go. Turns out it’s not a party after all. Everyone getting an award has to go on stage and then give a little speech to the crowd. Going to be at least 100 parents sat in the audience. We have to practice the speech tomorrow. When I told the teacher about my Aspergers she said ‘it would be good for me'”

So we have gone from a boost to self confidence to meltdown. Doesn’t help when the kids have been told that they are representing the school so they need to be in full uniform and speak with a loud clear voice. Speaking to a large audience is a challenge for anyone. For a kid with Aspergers it’s a nightmare. Room full of strangers, no where to hide, all those eyes on you. One final twist is that the kids can take notes on stage to read from – well that’s bloody helpful when your dyslexic. It’s just not right. AGAIN.

So we have agreed that son will ask if he can get his award without going to the event. If he has to go then he is going to decline the award. If that’s the case then I’m sure a Dad , Son, Cat, Dog and Gerbils can come up with our own FUN awards night. The magic word being FUN.

The view opens up

One of my Running trail runs is tough. It’s a muddy slog through increasingly thick woods. It’s a slow claggy run climbing through undergrowth that sees only glimpses of the sun. It’s very claustrophobic. Your on your own. A little voice keeps telling you to just stop. Why am I doing this. One step forward, two back.

But with patience and effort the going becomes easier. The ground levels out. The cover starts to thin and the distant view begins to reveal itself.

Then your out. The openness is initially disorientating but it’s been so worth the struggle.

Then a reluctance. A moment of doubt. Need to turn your back on the openness and head back into the dark. The way is back through the woods.

This trail run reminds me of our life these days. I head into the working week with trepidation. Too much to do and not enough time. Self doubt is king. Often so little direction and so much frustration. It feels like you are against the world. Battling uphill through mud. Our Son heads into 5 days of mainstream school. So little help. Fighting on his own. Not sure why he is doing this. It’s an alien world. You just have to keep plodding on but then Friday comes. Our hopes and spirits build. Then you arrive at the weekend. For two sweet days life improves. The week’s slog and struggles are forgotten. But so quickly it’s late Sunday and you face the trepidation of the upcoming week and the return to the darkness.

So we move on. The week calls and maybe so does the woodland trail. That’s our life cycle.

Silverback

Must cut my grass…..

One of those days where you line up a full day of work and then son wakes up with a temperature…. One too many coughs and he’s off sick. One too many sneezes and he’s contaminated me. Deep joy.

Still a day off from school will delay yet another bust up with the teachers. Maybe get my stress levels down to just below meltdown level.

In one subject last year he had a great teacher who seemed to get dyslexia. At the Parent Evenings she would tell us that in her opinion our son was as good as anyone in the subject in the school. She would say ok he struggles to write the knowledge down on paper – but we can find ways round that to suit him. It was refreshing to hear a teacher say that the key thing is the actual subject matter not the written English – that’s got its own subject anyway.

Unfortunately that teacher left. The replacement teacher seems to follow the school line. Neat handwriting and spelling come first, subject matter second. So now son is seen as low attainment in the subject. This terms homework project requires many pages of handwritten essay work. Points will be given for the quality of the presentation and points lost for things like spelling mistakes. So kids with dyslexia who struggle to write are being set up to fail. The school must know what a huge disadvantage this places on some kids. Oh I forgot – those kids are low attainment so it just proves the point. That’s modern education in England.

So once again I go through the finances to see if I can find a way to homeschool. Once again I fail. It’s at times like this that I feel so frustrated as a parent. It’s like constantly wading through treacle. Every step forward is such an effort. I’m so knackered – lord only knows what our son feels like. Everything seems to be stacked up against us. But sadly I bet if you asked virtually every parent and child dealing with a learning disability then they will say the same thing. It’s a never ending slog. And like all these wonderful parents and kids – we fight on. We love a quote which is maybe from Einstein, but if it isn’t, then it’s still a belter.

“Everyone is a genius. But if you judge a fish by it’s ability to climb a tree, it will live it’s whole life believing that it is stupid”

Or the other belter which comes from Spongebob.

“Patrick, you’re a genius!”

“Yeah, I get called that a lot.”

“What? A genius?”

“No, Patrick.”

Talking about genius. Then there is our sons Dad. I’ve been struggling with a Rhomboid injury. I had the bright idea of strapping it up with kinesiology tape. First of all – what a stupid place to put a muscle group. When you don’t have a partner – how in all that is holly am I supposed to get my hands back there… Then having dislocated my shoulders just enough to get my hands next to the Rhomboid I somehow need to attach this super sticky tape neatly across my shoulder blades. With a physio it’s a piece of cake. In my case think disaster. So several strips went on in the wrong place, creased or just badly twisted. But here’s the final insult. Now these useless attempts need to come off. Where in the instructions does it say in big letters – whatever you do if you have a back as hairy as a Silverback Gorilla on no account buy this tape. And if you are stupid enough to apply it to hair then change your name to Mr Stupid from Stupidville.

That’s me and my postal address.

The Golden Ticket

It’s amazing what you come across on a daily basis. You get good discoveries that just make you go ‘wow’. The ones you can look at for ages and get a sense of wonder.

Then you get other discoveries which make you go ‘wow’ for entirely different reasons.

Today I came across a headline in one of our so called better newspaper – The Times.

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Pupils lose out as £400m schools funding diverted to special needs

Children have been losing out because millions of pounds earmarked for their education has been siphoned off to pay for special needs education, an investigation by The Times has found.

A surge in pupils categorised as having special needs has led schools to lay off staff, increase class sizes and cut back on subjects as councils raid mainstream education budgets to fund support for them.

One headteacher said that the funding reforms introduced in 2014 created a new education, health and care plans that were seen by some parents as golden tickets”

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Don’t try to read the article as you have to pay Murdock for the pleasure. No free news here. Where do we start with this article from the Rupert Murdock stable.

  • Am I missing the point here but surely SEND (Special Educational Needs and Disability) kids are pupils as well. My son is a pupil surely. Not according to this newspaper. Clearly The Times would like to scrap inclusion and go back to the good old days where too many kids where denied the opportunity of mainstream education. The Times journalists have an underlying principle to most of its commentaries. Well if I don’t need that support so why should we be paying for it.
  • This article is likely to cause some parents to start resenting and blaming SEND kids for school problems. It’s pouring fuel on the fire of resentment and bullying. Basically what this article is saying is the those SEND kids are robbing Normal kids. It is deeply irresponsible and distasteful journalism.
  • The article doesn’t mention the 1500 SEND kids who are unable to find a mainstream school that will accept them. But it according to this journalist – that doesn’t matter as they are not pupils.
  • Blaming SEND kids for the £400m short fall in school budgets is lamentable. Clearly according to The Times this countries crisis in class sizes and falling teacher numbers is purely down to SEN kids. Let’s not mention that school budgets have been severely squeezed as a directly consequence of Government funding cuts. Let’s not mention that this Government introduced a new assessment system but refused to fund that change, That’s the very Government this newspaper supports whole heartedly.
  • This country has had a crisis in SEND school funding for years. It is chronically underfunded, it has always been chronically underfunded. Recently it has been subject to further Government cuts. No mention of that then.
  • A surge in pupils categorised as having special needs. It makes it sound as if suddenly parents are inventing SEND symptoms. This country has an estimated 350000 kids with a learning disability. Most experts say this is a fraction of the actual number. So many kids go through education without having a learning disability diagnosed. For too many years we have failed to address this educational crisis. This is going to get worse as a direct consequence of Government Policy as the criteria for SEND diagnosis is becoming stricter – purely to save money and not based on any health grounds. This is at the same time that funding cuts are resulting in longer wait times for an actual diagnosis to take place.
  • Finally ‘a golden ticket’. Really. In our case it’s the reverse of the article. The funding which has been awarded to our son for his learning disabilities is being used to part fund Teaching Assistant support for the whole school. The article also fails to reference that most SEND parents are already paying for additional care and educational support. This so called Golden Ticket only covers a fraction of the true cost of support.

Once again journalism gives us an insight into the deep rooted problems we have in society. The media reflects the current views of our so called Governments. It shows how far we have to go. How difficult this fight is going to be. I will leave the last word to my old Dad. He would call The Times ‘excellent toilet paper’. Thats all its good for.

Yorkshire Chilli

After years of trying to grow just one chilli in the subtropical climate which is Yorkshire we get to this. In about 10 years this is as good as it gets. Two huge Guinness Book of Record Largest Chilli winners. But after all the years of failure I will take these mini wins.

The one thing you learn with bereavement is that every persons grief journey is different. Regardless of what the textbooks tell you ITS UP TO YOU to find your own route through the minefields you find yourself stuck in the middle of. Some can do it within months. Others it takes longer, sometimes much longer.

I was listening to a bereaved man on the radio. He had starting dating again within a couple of months of the funeral. He was remarried within 6 months. In his words he had ‘grieved for about 6 weeks then it was time to start again”. When asked if he still grieved he said ‘No I have moved on’. That was his way through and out of the minefields.

One of the saddest and most beautiful things I have ever heard was an elderly chap who had lost his wife. Every wedding anniversary he took his wife’s ashes out to the same restaurant. He would sit and have his meal alone with the ashes. Nobody knows what he would say but he frequently cried. He’s been doing that for over 20 years. Maybe that’s someone who has chosen not to leave the minefield.

I’ve been in the grief minefield for 3 years now. But that’s only part of the story. No real time to grieve as I had to step up to being a single parent. I needed (still need) to give our son the best possible childhood he could possibly have under these circumstances. In my brain parenting became more important than grieving. My way out of the minefield frequently became muddled and lost . What happened was often parenting driven rather than grief oriented. For example.

Three years of virtually no social contact happened not because of grief rather because of having a young kid with Aspergers.

In those three years my not so great social skills have become extremely limited.

Last week I had a lunchtime coffee with four of the mums from our sons school. I’ve done that a couple of times over the last 3 years. It’s only for 30 minutes or so. In my case it’s now Peppermint Tea rather than Coffee. It’s about my only non-son social life these days, certainly since the world changed. Talk about wooden. I end up just listening. Luckily the mums are really nice and I think they understand. It’s a start. A little dip of the toe back into the big bad world. It’s a mini win. At least I’m not still in the middle of the minefield.

So like the chilli in Yorkshire. I will take the little wins. I think it shows that I probably want to make my way out of the minefield eventually but I have to admit – I’m not entirely certain about that….

Not Great anymore

Donald Trumps Wall appears to have started in Yorkshire. Here it’s probably to separate the privileged few from the many.

In my country professions like Teaching, Policing, Nursing, Clinical Specialties once we’re highly respected. This respect was reflected in pay and pensions. Unfortunately times have changed. Or should I say Government Priorities have changed. The argument was that low taxes was the new king. Low taxes on the rich and the money generators started to dictate thinking. The Government started to pick fights with various professions. A deliberate attempt was made to erode public confidence in areas like teaching, health and policing. Then the money generators messed up and we had the financial crisis. Suddenly austerity was needed. But again it was austerity for the many while protecting the few. So the Many and the Public Sector took the hit.

Government introduced competition into all areas. Suddenly contracts were awarded on best value for money. Best value rapidly became defined as the cheapest. As a result the workload on services increased. Quality levels dropped. Providers repeatedly changed. Unfortunately on top of this the pay and pensions of hard working professionals were also squeezed.

When people find their wages and pensions squeezed three things can happen

  • They buckle down for less money but their standard of living is eroded,
  • They become disillusioned,
  • They leave the job.

The Government trots out the argument about the cosy public sector life. The country will be better when everyone works in the good old private sector. Let’s not forget that our Prime Minister said of his own position

‘My Cabinet Ministers salary of £141,000 is not enough for me to live on’

When he said those wise words he was living in his rent free £20M Ministerial Mansion…. one rule for the few and a completely different rule for the rest of us.

A kid with Autism needs above all stability. Continuity in care. Trust is a commodity which takes along time to develop. But those key qualities have been destroyed by Government Policy. This year every single Teacher and Teaching Assistant changed for our Son. We have had to start again trying to build up the so important knowledge base of his particular educational needs. His Paediatric Care Provider has changed and we wait for his new clinicians. Wait is the buzz word. Appointments have gone from 4 times a year to twice a year to once a year. Not sure what the definition for a Year is. We recently received a letter saying that due to the change of provider the next appointment will be significantly delayed. He has had the same Physio for 4 years. But she quit her role. Then the next Physio left after one session. Another Physio then left before the first session. Currently we are waiting another a Physio to be appointed. He had access to a brilliant Clinical Psychologist but she retired and was never replaced. He started work with a Speech Expert but after 2 months she left the profession and the service was cut. He started a programme to work on his optical muscles but the service was cancelled with responsibility passed over to Education. Education refuses to provide that programme. I could go on…

So while our PM moans about his falling living standards the many are picking up the pieces. That’s modern Britain. It’s not Great Britain anymore. It’s certainly not great if you are not one of the Few. And it’s certainly not Great if you are a kid with Autism.

Sensory overload

There is a scene from the 2009 Sherlock Holmes movie. Sherlock is in the restaurant waiting for Watson and his fiancée. You see him people watching. But quickly the noise and the images overwhelm him and he closes his eyes to shut out the world. Too much for him. Sensory overload.

It’s one of the few times I’ve seen this depicted on screen. It’s a problem for so many in our society. Yet it’s an often overlooked element of autism.

Imagine every time you go shopping, or sit in a classroom, or walk in a busy street or sit on an aeroplane or cross the road …. you get hit with this sensory overload. Too many different noises, too many images, too many smells, just too many sensations. Your brain just can’t process them. It can cause anxiety, confusion, anger, blurred vision, a meltdown or it may just hurt a lot.

Son has suffered with this. I’ve suffered with this.

Sometimes it’s easy to spot those potential sensory vortexes. Places with lots of people in a confined space. Various noise sources. Complex lighting. But often it can be more subtle situations which can produce the dreaded vortex.

  • Bright colours and certain patterns. The wrong type of wallpaper. A vivid unusual designed piece of clothing.
  • Where you try and process a number of facial expressions or different types of body language at the same time. A school corridor.
  • An unusual or striking taste sensation.
  • An unpleasant touch sensation. The wrong type of sock or glove. With me it’s often the feel of cold metal.
  • Trying to listen to a conversation where a number of people are trying to talk at the same time.

Over time you learn which environments will cause the issues and you start to avoid them. That’s potentially one of the reasons some with autism seek isolation and a private lifestyle.

Our son had started to develop his own defence strategies. One of his most effective ones is dreaming. When the environmental factors start to become unpleasant or unsettling he will often dream. Create a world he can fully control. This helps him shut out many of sensory inputs trying to overload him. You will often see him flapping or stimming during this process. He doesn’t completely shut out the entire world. He can keep track of certain inputs. You will see him dreaming but at the same time he is scanning a conversation or a teacher talking. As a kid I would do something similar when the anxiety started to kick in. Suddenly you feel your back in control again. Unfortunately I was not as good at keeping track of what the teacher was saying – my school reports often mentioned I was a day dreamer and needed to try harder.

Unfortunately as a society we are just not geared up to understand these issues. If you don’t conform to the required standards then you are labelled different. A problem. Most schools give little thought to how they design a classroom and no thought to what goes on the walls. But this can have such a huge impact. A psychologist told me this true story.

A young girl struggled to concentrate in the classroom. She was unable to read at school or in the home. She was written off as low attainment with behavioural issues. Then she was referred to a specialist who asked school to try and teach her in a different location with plain walls. The only room available was a little empty storage room under the stairs. Unbelievably the girl suddenly started to read in the store room.

The problem was that the classroom had a bright patterned wall which overloaded the girls senses. Every room in her home had complex patterned wallpaper. Quickly her parents redecorated the house with one colour paint. Unfortunately her school did not change the classroom so the girl would go to read in the storeroom.

We are seeing progress. For example some stores are starting to run autism friendly shopping slots. We went to one. The shop had turned down the lighting. Switched off the PA and music. Staff wore white shirts. Some of the bright coloured walls were covered over. The store controlled how many people entered the store. It worked and made such a difference.

As a society we have failed too many for far too long. We need to stop being so judgemental about those who don’t fit into the narrow accepted standards. We also need to have a long hard look at how we design our public buildings and homes. Let’s start to make a difference.

Unsettling

It’s been a seriously grey day. Heavy rain due within a few hours. When it’s like this you can’t see where the road ends up. You end of questioning your judgement. On your own it can be deeply unsettling.

Unsettling is a term I’ve become used to over the last 3 years. When my partner left this world it was a massive shock to my system (understatement of the year). For years I had got used to that wise voice guiding me through the world. The wise guide on life, on parenting, on everything. Suddenly life was uncertain. Now I was map reading on my own. Trying to navigate life and Aspergers felt like walking an increasingly thin tight rope without a safety net. Initially my approach was trying to make decisions that I thought my partner would make. Never going to work. We were different people with different takes on life. It was down to me to own this. Take responsibility. But it’s easier said that done.

Three years later it’s still easier said that done. Grief tries to rob you of your confidence and self esteem at a time when you are your lowest ebb. You have probably just lost your guiding light. Everything is stacked against you.

So again this weekend another crisis of confidence. Been many of these. Am I handling the school situation correctly. Should I be more forceful? An I being to pushy? Am I getting this badly wrong like most things. How can I be trusted with this when I can’t sort my own life out. Basically I’m out of my depth here. It’s a deeply unsettling feeling which sadly is not restricted to me. Too many live with this. In my case this leads to an initial overthinking of the situation, then the mind keeps focusing on the negatives (the possible ways I could mess this up), next comes the crisis of confidence which leads to a spell of depression. Well at least I’m predictable.

But the bottom line is that it IS DOWN TO ME. No one else is here. So I might think that I’m the wrong person to do this but I am the ONLY person available to do this. So it’s time to just try to keep moving forward. Move forward even though the path has disappeared. Hoping that one day the fog will clear. Then is the time to judge who bad my judgement has been.

How does the mind work

I can memorise phone numbers, the stars in constellations, virtually every of the Mr Men books yet every year I can never remember what the tree which overhangs our garden is. Every year I have to look it up……

Dad why do I find some long words easy to remember yet some small words I have to keep relearning every time I see them

It is one of the great frustrations of dyslexia. When you read some words, maybe all words it’s always like your reading them for the first time. Doesn’t matter how many times you see that word it’s always like you have never seen it before. Constantly having to decode and relearn. Speaking with the health professionals there can be hundreds of potential neurological, physical, visual, environmental reasons for this. Often it will be a spiders web of causes. Some get answers, many don’t. With our son we have only just started to scratch the surface. Maybe the best we can hope for is by trial and error we come across stuff which help but we will never fully understand why.

I can sort of understand what our son is going through from my own experiences. I was a reading late starter. I eventually found a way that worked for me. But there are words that I still constantly struggle with. They stop me in my reading track for a few seconds. Thoroughly is one that I have to almost relearn every time I read it. I struggle with spelling. Autocorrect is such a godsend. Then you get words like There, Their, They’re. Every time I use it I have to relearn the rules on which variant to use. It’s as if my brain just blanks the rules as soon as I’ve used it once. It’s not that I don’t understand the rules, I just can’t see them, just see static. Never will understand why.

It’s like trying to fully understand grief. The brain processes it in different ways. Some memories are painful. Some items I can’t touch or look at anymore. Yet other items bring happiness and are almost like a comfort blanket. I drive past the first house we lived in as a couple and I often stop. It brings good memories and smiles. Yet I can’t look at my mums last house. It’s filled with good memories but …. When I go to the Dentist I should drive past the house yet I take a much longer route to avoid the street. I can go by the hospice where my partner died yet I become a shaking wreck if I walk past one of the wards where she was initially assessed.

Some days the brain relishes working on its own. No complications, no alternate views. Isolation is a boon especially when the world seems so alien to me these days. No awkward social moments. Peace and tranquility. Yet other days the brain can’t cope with the isolation. It’s a cold dark prison. The world is living outside yet I feel so adrift here in these four walls. No love for the prisoner, just got to do my time. It’s the same house and same brain yet different outcomes.

How does the mind work – it’s beyond me.