Achievements…..

I want to talk about something that annoys the hell out of me.

Tonight it was my oldest child’s school show. That child gave their heart and soul to that production of a well known musical. Although they usually only attend school an hour or so a week, they were there from first thing until late night everyday this week and on Sunday’s leading up to this week.   My child wasn’t on the stage, that would be too overwhelming for them as my child is high functioning ASD, they headed up the lighting crew with a team of quirky volunteers, something this child has a real talent and passion for.  At the end of the show, acknowledgement and thanks was given to the cast, the producer, the band and conductor, the sound man yet not one mention was given to the technical team who worked every bit as hard as all the other people involved.  Then the music played again and people started to leave.  My heart sank for the children standing with my child at the light and sound equipment and controls their contribution went un recognised. I appreciate it was likely an oversight and they were likely not deliberately left out.  These actions have consequences though.  The show wouldn’t have been the spectacular event it was without their contribution.

My heart broke for those kids and my child. As everyone was leaving you could see the disappointment on their faces.

 

Why is it so hard to recognise achievement when it happens in a less obvious way?

I have watched my child grow into a beautiful young person who gives so much through volunteering to our community,  school hasn’t worked for them because most made no effort to understand my child and those who did understand were powerless to help them achieve in the way that is expected and recognised of our young people.

 

Despite this my child has learned to achieve in their own unique way.

Why though is it so hard to acknowledge those achievements?

Why are “thank you” and “well done” so hard for some to say?

 

I wish all the achievements of individuals were recognised and not just those of the high flyers that occur in the conventional manner.

When someone takes the time to acknowledge an individuals achievements you boost their self esteem, you build confidence, you make that person and their contribution no matter how small feel valued.

You make that person want to contribute more.

You make that person try harder.

You make that person believe in themselves.

In my experience for many on the Spectrum the majority of achievements even the small everyday ones are often much harder to gain, because they have to juggle sensory issues, learning from the inside out, processing delays, focusing difficulties, difficulties with interpretation, the need for repetition, the difficulties of overcoming rigidly all impact on ones ability to learn and achieve.

I know this is how it can be through personal experience as l am currently a University Student myself.  I struggle to concentrate, I struggle to understand, I burn out.

I wholeheartedly appreciate every “Well done” every “You can do it” every “I am proud of you.” They help me keep going they stop me giving up.

My child has been a pupil at their school for four years and not once has their unique achievements been recognised.

The message you give to someone on the Spectrum and infact anyone who tried really hard to contribute when their achievements go unrecognised is it wasn’t worth the effort, you leave them asking “why did I put myself through that?”

You leave them feeling they are not good enough.

My youngest child is classed as having low functioning ASD they are unlikely to achieve the expected achievements of their peer group such as sitting exams, going to university, having a job even living independently.  That doesn’t mean they don’t make progress although slow and small. That doesn’t mean their contribution is of no value.

In our house we celebrate everyone’s achievements no matter how small or large. We encourage pride and self belief. We value every little step. Everyone needs those other than the people we live with to recognise our efforts and achievements too.

Just stop and think what an amazing society we would live in if everyone’s efforts and achievements were recognised and valued .

Everyone would feel included.

We can build a society like that and it all begins with two words that take two seconds to say …..

“Well done.”

Try it, next time you see someone achieve something that is an achievement for them, even if to you it is something small and insignificant.

I promise you will watch them grow.

 

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Why I write…

I have been asked by many why I write?

Especially when to most who read my work I am anonymous.

I write because it helps me process things.

Often writing helps me see the bigger picture, it helps me look at a situation from different perspectives. Writing helps me make sense of what is often a very confusing world.

I write because I quite literally see words in my head as if they were print on a PC monitor that grows bigger and bigger until I let the words out.

I write with the hope  that by sharing my experiences and insight I might make the world seem a little less lonely for others struggling to come to terms with a diagnosis of ASD particularly for those who like me made it to thirty or beyond before learning who they really are.

I write with the hope of removing some of the shame and negativity that surrounds the stereotypical view society presents of those with autism.

I write because I can write about the things I want people to know about but would struggle to say verbally.  The things that when I try to talk, make all my words come out wrong or the things that I have an irrational fear that if I were to actually talk about them the world would end.  I am still working on solving that one!

By writing I can open up a conversation I would otherwise be at a loss how to begin.

To have a diagnosis of ASD you have to have some significant difficulties with communication and social interactions, those difficulties are overcome for me when I write.

When I write I don’t have to worry about eye contact, I don’t have to remember to ask corresponding questions, I don’t have to sit on my hands, I don’t have to wear my mask.  I can be the real me.  I can speak with my true voice.

I have found it so frustrating too,  having people telling me how it feels or how it feels for my children  to be on the spectrum when they themselves don’t have ASD.  That is not to say there are not amazing people out there who are not on the spectrum that do understand.  It is just I strongly believe if you truly want to know how it feels to be a child or adult with autism then the most accurate description is going to come from another who has already walked in a child or adult with autism’s shoes.

A prime example is I screw up at job interviews quite spectacularly actually  because when stressed I take questions very literally and answer them all wrongly as a result.  You can’t understand my frustration at this unless you have been there, I also have some processing difficulties which mean it occurs to me usually about twelve hours later just how much I screwed up. So for twelve hours I am under the illusion I have a chance. Then my world crashes down around me.

Yet most who know me would be surprised to learn this is an issue for me because on the face of it I have excellent communication skills!!!

As with most things in my life I have gone about things back to front, my youngest child was the first in my family to be diagnosed as having ASD, I received my own diagnosis four and a half years later. Another of my children received their diagnosis somewhere in between myself and my youngest.

Instinctively thought I have always felt best placed to understand my children on a higher level other than just being their mother, I connect easily with other children with ASD outwith my family and without really trying.  In some ways it is almost like we (others wit ASD) have a unique ability to understand each other, often without a need for words.  I frequently find the answers to problems that actually work for myself and children as opposed to the well meant strategies pushed at us by well meaning professionals who think they understand our world.

That is why I share what I write because if I can get just one person to really see and understand the world from the point of view of someone on the spectrum then I will have made a difference.  I wrote a piece a few weeks ago, about an analogy that compares a day at school for a child with autism to a can of coke that gets shaken throughout the day and then explodes on opening.

A day in the life of a child with ASD using the coke can explanation…..

Teachers and professionals have read that post, I have received so much positive feedback from those that read it because before some parents, teachers and  professionals didn’t understand because no one had explained it from the perspective of someone who was a child with ASD instead the information they had was often assumed.   I opened lines of communication providing an opportunity to really explore the difficulties a child faces.  In response I wrote a piece about how simple changes could make a child with autism’s life at school easier.

How I would make Sam’s day a better day, following on from the coke can explanation…..

If the world is to become truly autism friendly then the first step is to understand, followed by acceptance.

That is why I write, in the hope of contributing to a world where autism is understood and accepted.  Where those belonging to a different neurotribe are celebrated for their differences instead of feared.

 

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A letter to my children…

A letter to my children,

“I watch you struggle with the things other young people find easy,  I know how hard it is for you just to get out of bed each morning.  To go to school.  To go out in to the world that is so unkind.   I feel the hurt you carry in your heart, I carry it in mine too, I see the pain in your beautiful eyes, I feel tears burning in my own.  I know you yearn to be accepted, I long for that too,  to be treated as an equal, to feel welcome, to feel you belong,  my heart breaks for you every time you feel excluded, when you retreat back into your shell and those defensive walls go back up, I feel excluded too.  Isolated in your own world, where you feel safe and secure.

If I had one wish it would be for all those that have ever hurt you, to see the agony their actions have inflicted upon you, to see how hard you tried and continue to try, to walk a day in your shoes experiencing the invisible disability and absolute curse high functioning autism and demand avoidance is.  Maybe then they and the world would begin to understand.  Maybe then you would start to believe that life was worth living.  You have to fight these demons, but you don’t have to fight alone.  I am here.

I tell you every day you are amazing, that you are good enough and that no matter how hard things get you don’t runaway, you stand tall, head held high. I try endlessly to help you understand you can control this invisible force that dwells within, anything you consciously choose to do is not a demand you have the control you need, believe I can instead of I can’t.  Tell the voice in your head “I am choosing to do….”

You can appear so confident sometimes it leaves some confused, how can the young person who can stand in front of 100’s of people yet not manage ten minutes in a class of 30?  How can it be so hard to follow a simple instruction?  How is it so hard to take a shower when asked?

I pray, yes there is a small part of me still has faith in God, that you learn to tame the invisible beast, much sooner than I did.  I missed so much living because I was to afraid to try, to join in, to go places, I let autism rule me. I don’t want that for you.  I want you to take control, because I know you can do it, you are my children, you have my determination deep inside you, but you have to believe you can do it with all your being, you have to get  back up time and time again, and that is hard.  You will have days when you question everything, when you throw your hands in the air and give up.  It is o.k to take a pause but  you have to learn to take a huge massive breath and take responsibility when things go wrong, because they will, that is the way life is.  The world doesn’t and won’t end though.  It took me so many years to work that one out.  It was always easier to blame someone or something else.

You have a head start, you know the name of your invisible demon, over twenty years in advance of me, now is the time to tame it.

Someone once close to me said “you can be a victim or a survivor” that same saying can apply here too.  Choose to survive.

Look how far I have come, for years I didn’t engage in anything very constructive , but today I completed my second year at university, me that left school with next to nothing, just like you are now.  Don’t make this the end, turn it around and make it the beginning. You know you are smart, you know you can learn, you know you can be amazing.

Go out into the world and show them, show them your curse can be your strongest super power.  Show them the amazing individual that is hidden in there, learn to fly, learn to believe, learn to be happy.  You can do this, because I once stood where you stand now.”

 

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Busy……

I am having to be extremely strict with myself and stick to working on university assignments this week and next, so no new material until I finish. One of my university assignments is about life transitions, finding out you or your child has ASD leads to a transition between the life you had where there was lots of confusion and sometimes fear to where I hope I am slowly headed where I am better able to understand myself and where I have begun to to find courage to come out of the shadows and try again to do some of the things I find incredibly difficult, a few weeks ago I gave a talk on ASD to a group of 10 people.

I wrote….

A day in the life of a child with ASD using the coke can explanation…..

for that talk and the follow up piece

How I would make Sam’s day a better day, following on from the coke can explanation…..

 

about making Sam’s day better.  I never thought for a second so many people would read and share my work, this blog has had almost 10,000 views this week, 7000 people have read the coke can post, a fact I find most humbling.

Thank you, for reading my posts, for sharing my posts and sharing my journey, I warn you now I have no idea where I am going, but it is reassuring to know I am not travelling alone.

I am proud to be spreading autism awareness, hopefully one day there will be true acceptance.

In case this is my first post you have come accross, here is where it all began…..

Me too.  

 

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My mask…..

I read with interest today an article that suggests that babies as young as six months who are neurodiverse (on the spectrum) have been observed masking.

Many people especially thoes of the older generations have a strange perception that a child with an autism diagnosis somehow outgrows it, which isn’t true, many who are high functioning simply get better at hiding it!

There is no cure for ASD.

Masking is exactly what it sounds like, it is simply putting on a metaphorical mask,  in my case and that of many others of the autism spectrum, a nurotypical (normal) one.  It is when someone on the spectrum either consciously or subconsciously hides the telltale signs that they are autistic.

I have read articles that suggested subconscious masking was actually an inate survival mechanism, to stop one from standing out or from revealing a weakness.  Masking is like applying camouflage.  Some who received a diagnosis at young age are taught to mask by professionals who think hiding autism will make for an easier life for the youngster.  I taught myself.

Autism is frequently displayed and demonstrated to the world through media as being something awful something bad, something to be feared.  Hence the feelings of needing to hide it.

I have been masking for as long as I can remember, I do it consciously as well as subconsciously.  I have become a master of disguise, so much so I got to thirty five before receiving my own diagnosis. Many friends still don’t know, many relatives too, including one of my closest, my own middle child.

The perfect example of masking is where a child with ASD is claimed to behave perfectly in school but comes home and explodes into meltdown, in school they masked their autism.  As this example suggests though there is a price that is paid for masking whether at the time or much later.

My previous post looks at how autism impacts on the life of a child and how the everyday occurrences can effect someone on the spectrum. A day in the life of a child with ASD using the coke can explanation…..

This is my mask.

I can make eye contact.

I know not to take things literally and to read between the lines.

I don’t chew my clothes or fingers, or hair, I am never without gum though ever.

I can behave beautifully in public.

I don’t show anxiety around changes.

I can interact with other people normally.

I don’t flap or fidget.

I can tell jokes.

I can imitate facial expressions.

I don’t freak out when someone touches me.

I don’t have meltdowns in public.

I know not to say what I a thinking.

I know the majority of people don’t want to hear about Orca sightings or other random animal facts even though I would love to share them.

 

Some of these are subconscious others not so.  Since receiving diagnosis I have been letting my mask slip a little.  In someways especially at home I am more relaxed in my own skin, it only took thirty plus years to get to this point!   I caught myself flapping recently, when I heard news that one of my favourite places to visit had a new arrival.  I stopped as soon as I realised, embarrassed in front of my family.   I learned not to flap or talk with my hands at school I can remember being forced to sit on my hands, I can remember being mocked for flapping and hand talking. So I learned not to do it.  When I get excited a voice in my head says “no flapping” the girl in my head flaps but I don’t (I see in pictures).   I still talk with my hands when I feel comfortable in a situation, when totally not appropriate I still sit on them!

I have a mask I put on when required it is my autopilot.  Autopilot is how I survive social situations such as parties, meetings any situation where I have to be the “normal” me.  Autopilot consists of the list above, I psyc myself up take a huge deep breath and on it comes.

Two of my children are brilliant maskers so much so, for one it took ten years and an appointment with a recognised world leading expert in ASD and his team to get a diagnosis the other child is still without diagnosis though the day and time will come when it becomes necessary to pursue this further.  I can see their masks because they take the off at home, I see how hard they try to keep their masks in place, I also see the price they pay for wearing their masks.

Masking comes at a huge price and  I read with some horror that the life expectancy of someone with ASD is just 54, one of the main reasons for this is suicide.

Suicide.

Please stop a minute and think about that, really think, why do you think the risk of suicide within the high functioning autistic population increases nine fold?

The reason is the huge damage of trying to conform to society’s idea of what normal is does to someone with autism day in day out.

The brain of someone with autism is wired and works differently to someone considered neurotypical, it takes a tremendous amount of effort and energy to make an autistic brain demonstrate behaviour considered neurotypical.

Someone once explained it as being a MAC in a word full of PC’s.  I like that one because I love my MAC far more than I ever loved any PC!!!

Or trying to run a petrol car after putting diesel in it.

In my teenage years where  I have struggled most in life so far, and where I first realised I was an Aspie, I had huge difficulties with my identity, conforming to societies expectations and peer pressure.

I didn’t fit in, no matter how hard I tried, the cost of masking took its toll,  on three occasions I was pushed to the point of almost no return, I tried to end my own life, not as a cry for help, but because I was so alone, confused, overwhelmed and exhausted, I didn’t want to live.  Everyday I tried to conform in school, not that it always worked.  I was famous and had a reputation for throwing classroom furniture at teachers and running out of school.  At work, with friends, even in my family.  I didn’t fit in anywhere. When I was myself I got into trouble constantly, so I learned not to be myself, learned there are times where you definitely don’t give an honest answer, learned that being honest often lead to me getting hurt.

I did what many autistic young women do, I modelled my behaviour best I could on thoes around me. I perfected my mask.  Sadly I now watch my children doing the same, making the same mistakes, trying to suss it all out the same as I did.  One who knows not of my furniture throwing school days has been in trouble on numerous occasions for exactly the same stunt!

 

Can you understand how hard masking is to maintain?

You are at a party, you are talking to a friend, there is music blaring, faces, some you don’t know are everywhere, in your mind you are telling yourself to focus on the conversation.  Make eye contact, don’t wave your hands or flap, don’t say what you are thinking which is “I want to run away”, smile, laugh at a joke whether you understand it or not and constantly trying to keep the conversation flowing whilst inside anxiety has its hands gripped tightly around your neck, your heart is racing and your mind is working at a thousand miles an hour.  Masking is not letting any of this show. Masking is maintaining that conversation.  Masking is appearing as normal as the next person, whatever normal maybe.

The cost is exhaustion.

The ultimate  cost of masking is burnout.  Burnout is different from tired.  It is being so tired you can’t move, you can’t think, so tired you can sleep for days, so tired there is nothing left, inside you feel completely empty there is just a thick dead blackness.  So tired and broken that death seems welcoming.

For me burnout was…

Depression.

Post Traumatic Stress Disorder.

Anxiety.

Self harm.

Suicide attempts.

I can’t cope with what is considered normal life.  I never have been able to. From high school onwards I have really struggled.  I never managed more than a few weeks at college before dropping out because I couldn’t do it any longer. It was so frustrating wanting so badly to learn and get a good job, build a decent life but not being able to manage more than a few weeks before totally burning out again.  It can take a week sometimes more of sleeping almost solidly, plus high dose vitamins and painkillers to put me back on my feet.  For every day or week I pull off living in the neurotypical world there is payback, when I was a teenager it came in the form of meltdowns that saw me cry uncontrollably for hours at a time most days, followed by deep sleep that nothing could wake me from, it became a vicious cycle too much overstimulation meant exhaustion meant unable to attend college etc.   Now it is sleeping for days at a time at the end of each university and school term, living with constant gut issues, thyroid problems, hair loss and physical pain.

I have learned to manage burnout.

To cope with university I keep all social activities to a minimum in term time, I space meetings as much as possible and I plan nothing for the first week of the holidays so I can if needs be just sleep.

 

Why though are autistic adults driven to suicide?

We live in a world where different is feared, mocked and bullied. We need to teach children and adults that different is o.k, different can be good, different is nothing to be afraid or ashamed of.

I learned to hide my autism for all those reasons, it worries me that twenty five years on I have seen children run from my youngest who is very visibly autistic for the same reasons, as a society we are more autism aware but we are no more accepting and that is exactly why the suicide rate amongst adults with autism is so high.

No one can thrive in a world where they don’t feel accepted.

Todays children with autism  like my own are going to grow up to be adults with autism, please, please, please learn to be accepting of different, model this behaviour for your children so they do the same then maybe this tragic trend will start to reverse.

 

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How I would make Sam’s day a better day, following on from the coke can explanation…..

Yesterday I introduced you all to Sam.

A day in the life of a child with ASD using the coke can explanation…..

I used the coke can explanation to describe a day at school for Sam, Sam is fictional he is a little boy aged 10, he has red curly hair and a cheeky smile, he is a combination of my own school experiences and that of my children.

The coke can analogy was first described to me by another Autism parent a good few years ago and it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school. I have seen other people write about it, this is my interpretation.

In response to my original post I am going to take you back through Sams day making suggestions that I would try to make Sams day more manageable and perhaps even a little enjoyable and fun!

These strategies and suggestions are how I would approach Sam’s difficulties, that doesn’t mean these are the right answers or the only answers, as anyone living with autism knows everyone one on the spectrum is an individual and what helps one person may not help another.

Sam’s Day

”Come on Sam time to get up”

The light streaming in the curtains burns Sams eyes blinding him.

I would have a blind in Sam’s room that prevents the room being flooded with light when the curtains are first opened to avoid overwhelming Sams eyes.

Sam gets up, Immediately the pressures of every day life are upon him.
get washed and dressed, brush teeth,
go downstairs, join the rest of the family,

”Morning Sam”

Clothes are scratchy and uncomfortable, they are not comfy clothes Sam would choose.

Is it possible for Sam to wear clothing to school that avoids sensory problems?

School’s are required to make reasonable adjustments for children with a disability this includes difficulties around school uniform, allowing a child to wear jogging bottoms and polo shirt in school colours instead of the more traditional shirt, tie and trousers for example. 

Seems dig in, or don’t sit right, labels rub and feel different to the rest of clothing they become an annoying distraction for Sam.
Sam tries to eat breakfast but all he can think of is those seems and labels.

Sam is wearing more comfortable clothing and is able to eat a good breakfast.

Sam is calm and ready to start the day.

Sam now now needs to find and put on his shoes and coat,

By making sure Sams coat and shoes are always put away in the same place it will be easier for Sam to know where to look for them.
Shoes are heavy, they squeeze and pinch, feeling tight over Sams feet.

As with clothing is there a more comfortable option for footwear that school would accept? Training shoes in Black for example, compression socks may also help alleviate some sensory difficulties or simply turning an ordinary pair of socks inside out so the seem is to the outside can help. 
Coats are restrictive, bulky and annoying!

A fleece and separate thin waterproof might work better but still be as effective as a bulky coat.
Now Sam needs to leave the house.

Sam is ready for school, he still feels a little anxious. 

Sam gets in the car, the car is cold, the seats are hard, the car has a funny smell.

Do you really need an air freshener in the car? Could a seat cover help? 
The seatbelt digs in and restricts movement, it feels suffocating.

I would give Sam a fidget toy such as a tangle, headphones and iPod, along with a chewey to play with in the car to distract from the discomfort of the seatbelt and to help with sensory processing.

Sam arrives at school, he gets out the car, there are other cars, children and their parents everywhere.

Is there a quiet spot to park the car? Allowing for a more gradual exposure to the different environment?

We park in a quieter spot and enter the playground by the side gate.

So much to see, Where should Sam look?

So much noise,  Did someone say Sam?

Perhaps ear defenders or earphones that cancel out noise would help with the transition.

Sam has his earphones on, he is not as overwhelmed by outside sounds.

Where is that noise coming from?

Because Sam is wearing earphones he doesn’t trip on the step because he can concentrate on where he is going.
Sam trips and falls on the steps.
Sam gets up, he feels like running away!

Sam is still a little anxious at going into school.

The noise is the ringing bell,  Sam covers his ears and drops to the ground slamming his head off the ground!

Sam is still wearing his earphones as a result the bell ringing doesn’t overwhelm him, he follows the other children into school on time after a reassuring hug.

Sam enters his classroom last, twenty five noisy children each with their own unique faces, sounds and smells, Sams senses are totally overwhelmed, he covers his ears, shuts his eyes and slams his head off the nearest desk.
A voice is shouting “Sam, Sam, sit down Sam, come on now everyone into your seats, “Sam sit down.” All Sam hears is his name. He focuses hard but misses the instructions, he sees the other children sitting down and copies.

Is it possible for Sam to enter school another way where he is able to get into class first?

This would possibly make the transition to the classroom easier, allowing for gradual building exposure to his classmates as they come in, instead of being faced with them all at once. 

Sam enters the school ahead of his class, he gets to his classroom first and goes to his visual timetable which is on the wall beside his desk to see what his day looks like. He sees it is maths first and knows he needs to sit at his desk for this lesson.  His teacher notices Sam is seated and praises him “Good sitting Sam.”

When giving a child with autism instructions it is really helpful to be as direct as possible, it can be helpful to ensure you have their attention before giving an instruction, for example I would have said to Sam “Sam listening?” Waited a few seconds then said “Sam sitting” I would then wait another few seconds and repeat again “Sam sitting” once Sam was seated I would praise him by saying “Good sitting Sam.”

Chairs are dragging on the floor, like fingernails down a blackboard, the lights are too bright, the classroom is covered in posters and art work made by Childs, pencils on paper make a noise only Sam can hear,  it is a busy environment full of distractions. All Sams senses are overwhelmed, Sams eyes and head hurt, Sam wants to run away.
Sam again hits his head off the desk.

An autism friendly classroom would avoid having pictures on the wall within a child’s line of sight.  Offer ear defenders to lessen the impact of noise. Do the classroom lights need to be on? Is there enough natural light? Could the bulb in the light nearest Sam be changed for a dimmer one?

Sam is ready to do some work. He has on ear defenders.

Sam tries to do his work.
Sam doesn’t understand what he is meant to be doing, he couldn’t process all the instructions quickly enough. Sam can’t ask for help he can’t communicate his difficulties although Sam is verbal, it is to overwhelming to speak in class.

I would provide Sam with a card to show the teacher with a symbol depicting the need for help, possibly a picture of a hand reaching out, so he/she is aware Sam needs help.  I would also leave instructions written on the board so not just Sam but any child could read over them again.

Sam holds up his help card, the teacher goes over and helps Sam to get started on his maths.

Sam rolls his pencil along the table, mesmerised by the way the light dances along it’s straight edges, watching the light dance is soothing for Sam, he gets up and walks around, walking is soothing too, Sam gets told off for distracting the other children he is told to return to his seat.

To avoid this situation I would put in place a time-out card which Sam is allowed to show to his teacher when he needs some time-out of a situation.  I would also build in regular movement breaks where Sam is allowed to move around freely in a designated area either within the classroom or just outside.  Suggestions for movement that may help Sam reregulate his senses include shooting a ball in a hoop, bouncing on a trampet or running on the spot.

Sam takes a planned movement break of five minutes then completes his work.
Break time! Sam is alone, the other children won’t include him.  Over 100 children in the playground but Sam feels so lonely, he longs for company.  Again Sam is hit with sensory overload caused by the noisy playground environment, Sam covers his ears falls to the ground and hammers his head off the ground.
“Go play Sam”
Play? How do I play? What with? There are no toys, are the thoughts racing through Sams mind.
Sam doesn’t know how to play he struggles with imagination,
Play with who? Sam has no friends.

To avoid the isolation of any child in any school I would have in place regular sessions accross all year groups where acceptance and inclusion of all is taught and demonstrated.  I would ensure the whole school was aware and accepting of autism. I would reward children who demonstrated these values with house points and certificates to encourage everyone to join in.

In the playground I would provide activities that encouraged all children to play. For example balls, hoops, skipping ropes, bean bags etc.  I would have an are set aside for football and an area for free running.  Supervising staff would know what children would need some support like Sam will and see that they receive the help they need.

Sam runs up and down, knocking into other children, “ Go away Sam!” “You are in the way Sam”

Sam comes out for break, he doesn’t bang his head off the playground floor because due to feeling less stressed in his morning routine so far he is not so overwhelmed at the different environment, because there are things for Sam to play with and areas he can run freely Sam looks forward to break times, he doesn’t get in the way, other children encourage Sam to join in their games.
The smell and noise in the dining room at lunchtime causes Sam to retch, he then falls to the ground hands on ears, eyes screwed tightly shut, slamming his head off the floor, his senses overwhelmed again. Sam barely eats any lunch.

I would find Sam somewhere less overwhelming to eat lunch. Or sit him at a table as far away from where the food is served as possible.

Sam eats his lunch at the table beside the canteen door, next to an open window that lets in fresh air.

“Do your worksheet Sam!”

Again using a visual timetable with Sam will help him to understand what he is meant to be doing and if he needs help Sam has a way of asking using his help card.
Gym time, Sam is last to change, it is hard for Sam to change clothes, he is all fingers and thumbs,  his PE kit feels different, different materials. More labels. Light shoes that feel wrong.

Sam is able to change quicker because he is wearing clothes which are comfortable with less buttons and fastenings.  He still doesn’t like the change in feelings between his school clothes and PE kit but tolerates this better due to it having been easier to change.
At PE, no one wants Sam on their team, Sam can’t hit the ball with the bat, he gets struck out, he sits alone at the side punching his chin.

To avoid this situation I would either have the teacher pick teams or have a system where children pick names form a hat in turns.  I would hope with proper autism awareness and acceptance within a school a child like Sam would not be left out. I would also consider the needs of all the children within a class and look to choose activities that wouldn’t emphasise difficulties.

Sam goes to PE, his teacher splits the class into two teams and they play a version of  basketball Sam is good at getting the ball in the hoop.
Sam changes back into his school clothes, again everything feels wrong.

Sam changed back into his comfortable clothes having enjoyed running about at PE.

“Come on Sam everyone else has finished that worksheet!” Sam flaps his arms and stamps his feet.  Sam is struggling to hide his autism.
Sam wants to run away, he feels sweaty, his heart is thundering in his chest, the classroom is too hot, too loud, too bright, just all too much! Sam sits repeatedly banging his head off his desk.
Sam doesn’t understand, Sam needs to move, too fidget, Sam chews his fingers, the bones in his fingers are deformed from repetitive chewing.

Sam on returning from PE was able to look at his visual timetable and knew he was meant to be doing a worksheet, he was able to finish at the same time as everyone else, he feels calm.

Assembly, “Sit down Sam!”
Sam just can’t sit still, Sam just can’t keep quiet. Too many people, everywhere, it is all too much!
Smash, Smash, smash! Sam is smashing his head off the tiled floor.
Sam starts making primal noises, squealing, howling like a wolf, feet stamping, arms flapping.
Children whisper, teachers talking, it is all too much, more head smashing. Sam is crying.
“Sam back to the classroom” Sam stands up, he doesn’t understand why he has to leave and is guided back to the classroom everyone is staring, pointing, whispering “weirdo, freak, cry baby” Sam understands every single insult, the tears fall faster.

I would suggest allowing Sam to sit at the end of a row, so he can easily leave if he needs to, I would make sure he had a chewey and fidget toy along with ear defenders.

Sam finds assemblies difficult, his teacher is aware of this and sits Sam near the door, Sam has his chewey he chews on and his fidget toy, when he starts to feel overwhelmed he is able to show his time-out card and leave quietly without the others noticing and heads back to his time-out space to bounce on the trampet.

Sam is back at his desk drawing when the rest of the class returns from assembly, he looks at the visual timetable and sees it is home time.

“Sam get your coat and bag”
Sam can’t find his coat and what else was he to find….
Sam gets knocked into, pushed out the way, Sam returns with his coat,
“Sam where is your bag?”
Sam goes back into the cloakroom, more pushing and shoving to find his bag Sam’s bag is not on its peg someone has moved it, Sam is panicking, finally he finds his bag hidden out of sight over by the door.

Sam’s coat and bag are on his peg, his teacher sends the children in small groups to collect their things to avoid pushing in the cloakroom, Sam finds his things easily.

Hometime! Sam negotiates his way along a packed corridor full of a sea of moving children. He fights his way through the door outside into the playground to be met by the faces of 100’s of parents waiting to collect their children, Sam spots me.

“How was your day Sam?”

Sam’s class are escorted to the door by the teacher to minimise pushing, I would be standing in the same spot as I do everyday so Sam knows where to meet me.  Sam still needs to let off some steam as do most children after school but the risk of mealtdown is minimal because Sam has had a day at school where his needs were thought about understood and supported.

I hope in taking you back through Sams day is helpful in demonstrating that small easily implemented changes can make a huge difference to children like Sam they also help children without additional needs be understanding and accepting.

 

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A day in the life of a child with ASD using the coke can explanation…..

Tonight I helped a local group with some Autism awareness training, I think it went well.  I used the coke can explanation to describe a day at school for Sam, Sam is fictional he is a little boy aged 10, he has red curly hair and a cheeky smile, he is a combination of my own school experiences and that of my children.

The coke can analogy was first described to me by another Autism parent a good few years ago and it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school. I have seen other people write about it, this is my interpretation.

The coke can example…

”Come on Sam time to get up”

The light streaming in the curtains burns Sams eyes blinding him.

Sam gets up, Immediately the pressures of every day life are upon him.
get washed and dressed, brush teeth,
go downstairs, join the rest of the family,

”Morning Sam”

Clothes are scratchy and uncomfortable, they are not comfy clothes Sam would choose.
Seems dig in, or don’t sit right, labels rub and feel different to the rest of clothing they become an annoying distraction for Sam.
Sam tries to eat breakfast but all he can think of is those seems and labels.

Now shake the can!

Sam now now needs to find and put on his shoes and coat,
Shoes are heavy, they squeeze and pinch, feeling tight over Sams feet.
Coats are restrictive, bulky and annoying!
Now Sam needs to leave the house.

Shake the can!

Sam gets in the car, the car is cold, the seats are hard, the car has a funny smell.
The seatbelt digs in and restricts movement, it feels suffocating.
Sam arrives at school, he gets out the car, there are other cars, children and their parents everywhere.

Shake, shake, shake the can some more!

So much to see, Where should Sam look?

So much noise,  Did someone say Sam?

Where is that noise coming from?
Sam trips and falls on the steps.
Sam gets up, he feels like running away!

Shake the can some more!

The noise is the ringing bell,  Sam covers his ears and drops to the ground slamming his head off the ground!
I help Sam up, I hug Sam “it’s ok, you are o.k” Sam is now late for school.

Shake the can!

Sam enters his classroom last, twenty five noisy children each with their own unique faces, sounds and smells, Sams senses are totally overwhelmed, he covers his ears, shuts his eyes and slams his head off the nearest desk.
A voice is shouting “Sam, Sam, sit down Sam, come on now everyone into your seats, “Sam sit down.” All Sam hears is his name. He focuses hard but misses the instructions, he sees the other children sitting down and copies.

Shake the can harder!

Chairs are dragging on the floor, like fingernails down a blackboard, the lights are too bright, the classroom is covered in posters and art work made by children, pencils on paper make a noise only Sam can hear,  it is a busy environment full of distractions. All Sams senses are overwhelmed, Sams eyes and head hurt, Sam wants to run away.
Sam again hits his head off the desk.

Shake the can again!

Sam tries to do his work.
Sam doesn’t understand what he is meant to be doing, he couldn’t process all the instructions quickly enough. Sam can’t ask for help he can’t communicate his difficulties although Sam is verbal, it is to overwhelming to speak in class.

Sam rolls his pencil along the table, mesmerised by the way the light dances along it’s straight edges, watching the light dance is soothing for Sam, he gets up and walks around, walking is soothing too, Sam gets told off for distracting the other children he is told to return to his seat.

Shake, shake, shake!
Break time! Sam is alone, the other children won’t include him.  Over 100 children in the playground but Sam feels so lonely, he longs for company.  Again Sam is hit with sensory overload caused by the noisy playground environment, Sam covers his ears falls to the ground and hammers his head off the ground.
“Go play Sam”
Play? How do I play? What with? There are no toys, are the thoughts racing through Sams mind.
Sam doesn’t know how to play he struggles with imagination,
Play with who? Sam has no friends.

Sam runs up and down, knocking into other children, “ Go away Sam!” “You are in the way Sam”
The smell and noise in the dining room at lunchtime causes Sam to retch, he then falls to the ground hands on ears, eyes screwed tightly shut, slamming his head off the floor, his senses overwhelmed again. Sam barely eats any lunch.

Shake, Shake, Shake harder.

“Do your worksheet Sam!
Gym time, Sam is last to change, it is hard for Sam to change clothes, he is all fingers and thumbs,  his PE kit feels different, different materials. More labels. Light shoes that feel wrong.
At PE, no one wants Sam on their team, Sam can’t hit the ball with the bat, he gets struck out, he sits alone at the side punching his chin.
Sam changes back into his school clothes, again everything feels wrong.

Shake harder, Shake harder!

“Come on Sam everyone else has finished that worksheet!” Sam flaps his arms and stamps his feet.  Sam is struggling to hide his autism.
Sam wants to run away, he feels sweaty, his heart is thundering in his chest, the classroom is too hot, too loud, too bright, just all too much! Sam sits repeatedly banging his head off his desk.
Sam doesn’t understand, Sam needs to move, too fidget, Sam chews his fingers, the bones in his fingers are deformed from repetitive chewing.

Shake, shake, shake!

Assembly, “Sit down Sam!”
Sam just can’t sit still, Sam just can’t keep quiet. Too many people, everywhere, it is all too much!
Smash, Smash, smash! Sam is smashing his head off the tiled floor.
Sam starts making primal noises, squealing, howling like a wolf, feet stamping, arms flapping.
Children whisper, teachers talking, it is all too much, more head smashing. Sam is crying.
“Sam back to the classroom” Sam stands up, he doesn’t understand why he has to leave and is guided back to the classroom everyone is staring, pointing, whispering “weirdo, freak, cry baby” Sam understands every single insult, the tears fall faster.

Keep shaking that can!

“Sam get your coat and bag”
Sam can’t find his coat and what else was he to find….
Sam gets knocked into, pushed out the way, Sam returns with his coat,
“Sam where is your bag?”
Sam goes back into the cloakroom, more pushing and shoving to find his bag Sam’s bag is not on its peg someone has moved it, Sam is panicking, finally he finds his bag hidden out of sight over by the door.

Shake, shake shake!!!

Hometime! Sam negotiates his way along a packed corridor full of a sea of moving children. He fights his way through the door outside into the playground to be met by the faces of 100’s of parents waiting to collect their children, Sam spots me.

“How was your day Sam?”

Would you like to open that can now???

The coke can effect describes the child who bottled everything up for as long as they could.  This was my own experience of school and definitely the experience of two of my children.  Sometimes I didn’t last until the end of the day, I had a reputation for throwing classroom furniture out of the way while I made my escape.  One of my children who doesn’t know of my behaviour in school reacts in exactly the same way!!!

It is a fight or flight reaction, I just had to get out and anything in my path would be met with destruction!

For a child like Sam you need to find a way to release the fizz slowly.

At school pick up I  minimise communication with the children. Be welcoming with a smile, a hug and a high five. No matter how bad your day, remember how hard Sam’s day was?

My child like Sam bounces on a trampoline for up to an hour most days. My other child goes for a run. These days I use loud music and long walks when the need to let off steam arises.  They have to get it out their system just like I did.

If the coke can explodes before you can gently release the pressure you have to let the tears run their course. It may be a few minutes it may take hours.  The priority is keeping this child safe until the storm passes. Talking won’t work they can’t hear you in meltdown, touching can be risky and lead to more lashing out, all you can do is wait it out, be patient, be understanding.

Once the child is calming down use gentle reassurance, short sentences.

Never punish a meltdown.  The child has no control.

Now move on, be positive and kind.  The last thing any child wants is for you to drag up all the triggers and trauma that added up over the day.  School is done for the day, leave it there. Sam and others like him will have to summon up the strength to do it all again tomorrow.

 

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