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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.

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Crazy dreams

Dreams and memories are a vital part of life. After my partner died memories became my essential comfort blanket – something which kept me going. Three years later they are just as important to my soul. The occasional forgotten photograph find rekindle long forgotten life snapshots.

Dreams come in three forms for me. Those dreams of a future life, memories and those dreams which come during those all too brief periods of sleep. My future life dreams died when my partner left us. All I see is darkness. My job is to give our son the best possible childhood. After that nothing. It’s something I’ve heard from others in a similar position to me – I live through my son.

After the world changed my night dreams became a weird bizarre place. Reality completely warped. But increasingly the dreams became memory driven. Accurate replays of precious moments. This brought great solace with a few tearful mornings. But recently things have changed. Suddenly the night dreams are actual memory based but morphed in some important and strange way.

A lovely visit family trip to Edinburgh Zoo to see the Pandas. But in the dream the family trip becomes a trip round Jurassic Park world. All the actual incidents but with a dinosaur flavour.

A trip to the Royal Ascot Racing Festival held for one year at York. The Queen riding past us. 2005. Yet in the dreams it’s not Horse Racing. Sometimes it’s Dragster Racing. Sometimes it’s donkey racing. YES I get these strange morphed dreams repeatedly.

A family trip to the beach. It’s cold so it’s double jumpers. Ice cream and hot doughnuts. Yet on the first sandcastle we strike oil. Oil gushes out of the beach.

A romantic meal. Days filled of love and smiles. Yet the fine food is replaced with bugs and slugs and grubs.

A hand in hand walk round York’s Roman Walls. But instead of lovely views of York and it’s stunning Minster we see Paris on side and Nepal on the other side.

A New Years Eve Blues Brothers Themed Night replaced with a WWE wrestling night.

I could go on. So many odd dreams. I’m not a clever man so I’m not going to venture into Descartes territory. I suspect the reasons may not be that fundamental. But the bottom line is that I want my precious original sleep dreams back. Often they are all that remain of a better place. I like a bit of craziness but not here please.

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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.

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Another odd day

Another odd Yorkshire day. Mixture of sunshine and then chucking in it down. Warmish then freezing. Still and then gales. But it wasn’t just the weather that was odd.

This morning started with a broken works computer system. Won’t be fixed until this – Saturday so that’s several late nighters then to catch up. Didn’t really want any sleep this weekend.

Next came a heated exchange with school. Due to a school admin error son never got his Year 8 injection. Not an issue as the school nurse will be returning next year BUT just a picking minute. If parents or kids make one mistake it’s an automatic negative yet no sanctions on school when they mess up. Apparently in schools case it’s just one of those things as mistakes can happen. Have you had one of those calls where you can feel the blood go from boiling to nuclear. One of those calls where you are increasingly squeezing the life out of the telephone. This was certainly one of these.

The call rapidly moved onto the lack of support for our son and the refusal of school to move him (at least in a couple of subjects) to a higher set. Last school year his Form Tutor told us that he was performing so well even without support from school. She was one of the few teachers who seemed to understand dyslexia and autism. As his marks were in the top 2 of the class then he should be moved up in at least 4 subjects. Unfortunately she left in the summer. On the call school said the Form Tutor was incorrect and it is not just marks that determine academic performance. Now apparently he is viewed as being in the lower middle of his class with many children ahead of him. In effect he is a low performer and any moves up in set are out of the question. The call ended (to the phone handset great relief) with a terse Dad demanding another meeting with school and the council. Not that it will do any good.

Needing to cool the raging core meltdown within I went for a run. A couple miles into the run a hot air ballon appeared over the trees. A quick photo and off I set again. Head down.

Running through the woods I started to hear voices. But nobody was insight on the path. Oh no it’s those Viking Ghosts. Then a roar of a burner above. Now the balloon was directly above and just above the tree line. I’m being buzzed by a mad balloon pilot.

Then a shout and they started waving at me. You wouldn’t be waving if I had a pellet gun with me.

Then it slowly started to rise and off it went.

Just before school finished I had a dreaded dental appointment. Might as well buy a yacht in Monte Carlo – unbelievably expensive. I ended up being told off for trying to be healthy. I have always had lemon water when I am training. Even more since I’ve stopped drinking coffee. The Dentist was not impressed. Apparently lemon (even watered down) is really bad for the enamel. Good job I didn’t mention the super strength lemon drink I have when I wake up. So now I am supposed to switch to Cucumber Water or Thyme Water. Cucumber Water taste like the liquid you drink as the last resort if your stuck in the desert. I’m only guessing that as NO I have not drunk my own …….

One last odd twist. Son came back from school with a letter. The letter was issued to son before my heated argument with school. In a few weeks the school is having an awards night. And son is getting an award for the number of merit awards he got last school year. This is fantastic. BUT. Not sure how this tallies with the schools current assessment of him.

Definitely an odd day.

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Commitment

This photo is from a couple of days ago. It was reasonable weather.

Over the last couple of days the weather here has been a little more damp. The Photograph below from The Guardian sums up today’s dampness. Welcome to Yorkshire – the worlds best cyclist competing at the UCI World Championships and enjoying the welcoming Yorkie weather. As my Dad would have said that will put hair on their chests. Bet the poor riders didn’t expect to be riding through lakes. Amazingly the race was completed. Thats commitment for you.

Parenting is about commitment. Even I realised that before our son was born. The bizarre assumption we made was that at some stage the kid(s) would fly the nest and we would go back to something like our old life’s. Maybe after school, after college, after university, maybe a bit later. But at some stage it was happening. At some stage parenting becomes more part time and the stuff we had to park can be resurrected. In my case socialising with friends, climbing, playing sport, career, astronomy….

“WE” would get our life’s back – yes I never envisaged one tragedy…..

But maybe the full time parenting commitment may last longer. I remember our sons lead health professional telling us

“It is possible that your son will be largely independent at some stage. However on the current evidence this might be the least likely outcome. You need to prepare yourselves that he may find it very difficult to live independently at any stage.”

As a family we are so fortunate. Son is making great progress in many areas. So many families don’t get this level of progress. But there are clear areas where progress is not being made. We have to be realistic that progress may never be made. Support may be needed life long. That’s a sobering thought and raises so many knock on considerations.

Those parts of my life I assumed would restart at some stage may in fact not happen. I don’t like admitting it but this thought makes me sad. But that’s life. I now realise bad things happen and you have to deal with them. You never know son might one day take up something like climbing. I suspect not in the case of climbing. He is a natural risk assessor. He might make sufficient progress to become fully independent. We just have to see what happens.

I know I’m not the only one who is in this position. I was reading a similar thing from a blogger I really respect just the other day. Parenting sometimes doesn’t work out the way you have imagined. Parts of your world are lost. Dreams become unattainable. Although parenting is the best gig in the world it is so hard to explain to others how part of you can still feels so sad.

I now know that this is parenting. Its about sacrifices. It’s about commitment.

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Is Phonics the wrong path

Our much beloved School Minister (and first holder of our Boris Numpty Award), Nick Gibb declared “the debate is over”. He was referring to his decision which meant the all kids in English schools would have to learn reading by phonics. Kids are taught to break words up into parts and then learn individual sound parts. Previously kids were taught with a mix of phonics and the old approach of memorising the whole world.

Interestingly our School Minister who is an expert in all things education has no practical experience of teaching. He is an accountant. Which makes me equally qualified to set school policy….

Yes phonics does work for some kids but not for others. For example many kids with dyslexia or kids on the spectrum struggle to decode words and then struggle to produce the right sounds for each individual part. I’ve tried phonics and I struggle with it. It’s a disaster with son. We could be trying to use phonics for the next 100 years and it will still not help our son to read.

We all must have done this. Set out for a nice walk. In the case of the photos across the stunning North Yorkshire Moors. Then you come to a crossroads. Paths going in all directions. You look vaguely at the map. Try to look like a professional. Fold up the map carefully. Then go Eeny, meeny, miny, moe and randomly guess the right path. In my case it is usually unerringly wrong. After several miles you get that sinking feeling – wrong path.

Actually wrong path is not the best description. It will be the right path for many. It will take them to their desired location. But for some (like me) we could go down this path for years and it will never ever get us to our desired location. So what I need to do is get off this path and find a path which works for me. That is the sensible thing to do. As a I am not that sensible I won’t retrace my steps back to the crossroads. I will try to break trail in a different direction in the hope that I will find the path for me.

Now according to our Schools Minister all kids should go down the same reading path. Unfortunately doing that will guarantee that some kids never do arrive at their destination. Endlessly walking down this path, getting lost, getting disillusioned. That’s what happened to us. We blindly went down the phonics path and basically got no where.

But then we stopped and said stuff you Nick Gibb. And we broke a new trail.

  • We started learning some of the most common words the traditional way. Son would memorise the whole word.
  • We started playing around with various learning to read games on the internet.
  • Using trial and error son would try to use app’s like YouTube, Google Search or games like FIFA by himself.
  • Son would watch TV shows with the subtitles on. Movies like the Avengers were perfect. He knew them virtually off by heart. So he could focus on the subtitles and start to make links.
  • He would relentlessly work on his coordination. He would read a grid of letters while clapping his hands. He would bounce a ball while trying to learn and read words.
  • We would jointly read books. Normally Mr Men books. They were just the right length and fun. He would join in when he wanted to. I would never correct a mistake. He would process that himself.

The new trail has started to work. We haven’t reached our son’s destination but it feels like we are heading in the right direction at last. Enough for son to call himself now – a reader.

So I hope our Schools Minister finds his own path. Preferably takes him a million miles away from this countries classrooms. Then we can get back to trusting parents, teachers and kids to pick the education path which best suits them.

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Magic Tree

And still it rains.

My phone is old but at least it’s just about waterproof.

Unlike my old battered raincoat which is anything but waterproof.

Our helpful government likes to point out to the great unwashed – there is no magic money tree. Well there is but it’s only available to the few. So like many households the number of items which are beyond their useful life is growing each day. Yet as we don’t have access to a money tree we just have to make do. Our list is not unusual.

  • Washing Machine – can’t select a cycle you get what the machine gives you. Plus it has a door which doesn’t shut properly so it needs to be kicked until it locks.
    Oven – has two settings no heat or nuclear fusion.
    Car – needs 4 new tyres which at least will triple the value of the car.
    Back Door – has so many leaks it’s been renamed WikiLeaks.
    Hairdryer – only blows cold.
    Shower – produces about as much water as the smallest water pistol.
    Dvd Player – only plays discs if they have been properly cleaned by Mary Poppins. Every disk seems to go into mad picture breakdown on the merest speck of dust.
    Boiler – was installed prior to the introduction of video recorders and home computers.
    Light switches -No lights in one room so it’s a great place to play hide and seek.
    Microwave Oven – has more rust than my first ever car (mk1 Ford Escort).
    Conservatory Door – doesn’t shut anymore unless you are called The Hulk.
    Laptop – in a permanent state of update and has as much processing power as a stick of rhubarb.
    Camera – has never been the same since it was accidentally dropped into a pan of boiling bake beans. Now everyone ends up looking like Donald Trump.
    Chimney – to narrow to safely light a fire. What were the builders thinking of. How the fiddle sticks did Santa get down that.
    Tumble Dryer – as much drying effect as one of my sneezes.
    Curtains – all shredded by cats.
    Furniture – all shredded by cats.
    House – all shredded by the cats.
    Freezer – the 3 plastic draws have disintegrated so all the food is just wedged in. When you open the door it’s an explosion of food items.
    Dish Washer – is no more, it is an ex dishwasher.

Every week the list of disrepair gets longer. But you just get on with it. Make the best of things. See the funny side to it. And above all remember that as bad as you think things are THERE are so many people out there with no home and no possessions. Which is appalling when you think of the wealth the few control. Just think what good that magic tree could do in the right hands.

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Voice

It’s been one of those Yorkshire days. Long periods of rain punctuated with spells of stair rod duck weather. It’s the perfect weather for a leaking back door. If we had ducks then they would be happily swimming about in the utility room. I know what the rich must feel like now – an indoor pool. Looking at ours I really don’t see what all the fuss is about.

It’s was similar weather three years ago when I had to go and see the solicitor about my partners will. I was in such a daze that I hadn’t realised that I had forgot to put a coat on when I got out of the car. Within minutes I was a drowned rat but I only realised when I saw my disheveled reflection in a shop window. Previously I would have had an angelic voice quietly whisper – why don’t you put a coat on dear. It’s the one thing I have never adjusted to. Not having that caring soul help guide this bumbling fool through the twist and turns of life. That’s probably why I still tend to avoid social gatherings. Not sure I trust myself.

I’m so blessed to have been with that caring soul for a wonderful 17 years. It’s created so many memories. Fortunately years of over using the camera has created multiple photo albums filled with these memories. Those photographs tell our story perfectly. But one thing is missing and it’s so haunting. I just can’t seem to remember her voice. After all those years we spent together how can I forget something so important. I just can’t get it right in my memories.

So I have been trying to find a video with my partner talking. So many videos taken but they all focus on our son. Then I came across our old video camera. The one we bought during the pregnancy. The one which has been gathering dust since mobile phones became the memory recorder of choice. No luck so far but I did come across something which completely floored me. A mini video disc marked up as sons first walk.

When it happened I had picked our son up from nursery. My partner was still at work. Son was sat on the floor singing away so I started filming him. Within seconds he managed to pull himself up and waddled across to me. All captured on film. Unfortunately our dvd was broken at the time so we couldn’t replay it. So I said I would go into the city and get it transferred to video. I kept putting it off. I never got round to it. Over time the disc was forgotten about. I never did share that moment with my partner.

You assume you have all the time in the world but in reality you never know how much sand is left in the egg timer.

It so important that we remember to seize the day. Don’t assume you will get another chance tomorrow.

So the voice hunt will continue. I know somewhere I will find it. Then my memories will be complete. And again I will hear my angelic angel.

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Just be happy

I was hoping to have a trip to see friends this evening. Its been a long while. Going to see a footy game at teatime seemed an ideal opportunity. Son was primed to spend a few hours with his aunts. But with Autism you never get your hopes up too high. Same with being a single parent. Things happen. Your needed elsewhere. Change of plans. So it’s a night of movies on the sofa. Son is in charge of the programme so can’t rule out having to endure Alvin and those pesky Chipmunks. It’s going to be different from the original plan BUT it’s going to be lovely. A blessing.

This brilliant quote comes to mind.

“How beautiful it is to find someone who asks for nothing but your company” – Brigitte Nicole

Posted on by bereavedandbeingasingleparent · 52 Comments

Autumn

Autumn is upon us. Everywhere you look the signs are clear.

The hedgerows are brimming with fruit. Intricate cobwebs everywhere.

Most of the swallows have now departed starting their six week trek to Africa.

Yellows, browns and reds are starting to dominate the foliage. Trees letting go as sad leaves fall to the ground. Soon the fruit in the hedgerows will be gone.

It was the time of year my partner loved the best. She loved the colours and the reflective atmosphere. A time she could walk quietly and just think. Now I walk the same paths. Today I was struck by one thought. My partner would have been looking at these same autumnal sights. Countless generations will have been looking at these sights. As much as you think the world has stopped because of your personal tragedy it never does. Life continues. The never ending cycle of life. The empty branches show the fleeting nature of life. Leaves fall but they will be reborn again. So should you – in your own time. When the time is right – it’s time to live again. It’s time to find a new way of blooming.

For me I’m still in the existing stage. I don’t tend to have personal dreams anymore. For years we had shared dreams. When my partner left us those dreams died. Now my dreams are my sons dreams. I exist because of my son. I live life through my son.

At some stage I will transition into the next stage. When I start to live for me. When I start to dream again. It’s strange how Autumn which is a time of life coming to the end of its cycle has sparked these thoughts. But maybe a better way to look at Autumn is that it’s a time of letting go before you start again. Rebirth. Yes that works better for me. It’s a time just before you live again.