The Big Bang Campaign… Keep it before 9 p.m

Remember, remember the 5th of November…

My guess is, many parents of children on the autism spectrum remember the 5th of November and remember it well!

The 5th of November is a night that will see the skies above us alight in an array of stunning, spectacular colours, but that’s not all we will see! Many of us throughout Britain will see not just our pets dart around the house in distress, but also a child or loved one.

Bonfire night is celebrated by huge numbers whether it’s by attending a large public display or hosting their own back yard antics. For some it’s a night of fun and laughter, a chance to meet friends, drink wine out of plastic beakers while eating hot-dogs smothered in mustard. For others it’s a night of hiding, turning up the TV and comforting their frighten child.

We grow up looking forward to such events, we loved them as a child and can’t wait to share a night stood by the bonfire with our own children. What is there not to like about this fun and eventful night?

Why don’t you ask that question to a child on the autism spectrum!

No, not all hate fireworks, but a large proportion of children and adults on the autism spectrum will spend the year dreading it! I wrote a last year about little mans fear of the firework! He thinks they are stunning and at a distance his not to bad with the big bang. But when there’s rockets flying about above his head, then bursting into a glittering infusion of colour, my child will likely do what I refer to as the “Army drop and crawl” Basically he fears the fireworks will come clashing back down on top of him, he freezes then drops, before embanking on his army crawl to safety. Despite this reaction, my little man could hold a sparkler all night long. As I explained before, it’s a sensory reaction, because the firework is above him and he cannot judge the distance between himself and the exploding firework, he then begins to fear it! My Little man feels much safer stood behind a pane of glass watching fireworks from the safety of his home.

For many people on the autism spectrum the dislike of fireworks relates to sensory sensitivity as-well as the dislike of “social gatherings”.

Even those who are not on the spectrum can have difficulties tolerating the loudness of a firework display, especially a big one! For the person with autism, this sensitivity to noise is sometimes so overbearing it causes actual pain. Now, can you even begin to imagine how hard that must be? I can’t and thank myself lucky that I do not experience such a difficulty. However this doesn’t mean that it doesn’t matter, because it does, it really does! Little man only has problems when we go out, so of course we avoid the public displays, or one parent stays home while the other treats the other children to a trip to our local display. That’s just how it is and always has been. I think that we are quite lucky, some children experience such anxiety that they require comfort from their parent throughout the night meaning little sleep is had by many.

I’m not trying to make you all feel guilty, nor am I saying this in the hope that you wont go to your local fireworks display or celebrate in your own way. I’m just asking that you all spare a thought for the families housing an autistic child or adult. I simply ask that as much fun as bonfire night can be, take a second to stop and think… Light your fireworks at a reasonable hour! Who is your neighbour, do you know a family affected by autism? Keep it early, keep it safe, keep it before 9 p.m.! That is all I ask!

“ Do you think that’s fair? If so, how about tweeting this post just once using one of the share button (tweet, Facebook, Stumble, etc.) located at the bottom of this post. You could even raise awareness on this one day, just by right clicking the image above and uploading as your profile pic on your social network” after all it is just one day!”

The Panic Attack

Not every day is easy when you’re an 11 year old boy with Aspergers Syndrome.

Little man is currently in year 6 of his independent special school. He will be making the move from primary to secondary in just a few short months. Although this is within the same school complex, this is still a massive step in Little mans journey.

Maybe this is why his current teacher is doing a great job to teach the children in her class some effective steps to independence. Every week Little man and his class peers embark on a creative cooking challenge which results in him bringing home some really tasty treats. However last week not only would they be cooking but first they had to go out shopping and purchase their ingredients.

Little man was dead excited and he left the house in high spirits despite having very little sleep the night before.

However at about 2 PM I received a phone call from his teacher. She explained that little man wasn’t feeling himself and was actually quite upset. He had expressed a need to speak with me so I said to put him on the phone. She was right, little man was indeed very upset, he sounded muddled confused and panicky. He repeatedly told me that he didn’t feel right and that I just didn’t understand as something seriously wasn’t right. Normally when the Little man isn’t feeling well he is rather quiet and reserved, so something definitely wasn’t right here!

Now I don’t drive and the school Is a good few miles away from where we live. Little man gets transport to and from school which is provided by the LEA. I asked him if he could possibly wait as he only had one and a half hours remaining until he was collected, this however didn’t go down well and he seemed to become quite erratic in his speaking.

I was quite concerned and it seemed he’s teacher was too as she volunteered to drive him home herself. Yes, I’m not actually used to such kind and thoughtful actions as things in mainstream school were of an extremely different story.

His teacher accompanied by a TA bought him home within about 20 minutes or so, much quicker than I could’ve collected him myself. This I was most grateful for.

Seeing little man and from speaking with his teacher and TA it was pretty apparent that little man had experienced a panic attack. He had claimed several times that he was feeling dizzy and he even asked one of his teachers if there was a possibility of him collapsing.

Little man looked tired and as white as a ghost. His forehead was sweaty and eyes were red, there was no doubt within my mind that this particular panic attack had been caused by his lack of sleep combined with the excitement of his planned day of shopping and cooking with he is friends.

He also had a bit of a tummyache which he had complained about the night previous. Once home he spent quite a while in the toilet something you wouldn’t find him doing while in school. Now in his own environment he seemed to relax and calm down somewhat. Lying on the sofa with a blanket over him, he drifted off to sleep pretty quickly.

Panic attacks are extremely scary for any adult let alone child to have to experience. The mind is a pretty powerful tool and during an attack there really is no reasoning with this tool. How do I know? Because I’ve been there before! My first experience of a panic attack was when I was a teenager. Seriously I thought I was going to die right there on the street and in my panicking state I started requesting that random people call me an ambulance. There is no words to describe the feeling you experience during a panic attack. The sheer terror you feel within. You really feel close to death, at that moment in time you actually couldn’t feel any closer if you tried!

Those who’ve never experienced a panic attack will never know the true extent of how frightening an experience this really is. The whole world around you is moving yet somehow you feel impounded to the ground your body is heavy, too heavy to move, your heart beats faster and you’re hand begin to uncontrollably shake. Your mouth feels dry, it’s hard to swallow even breath. I wouldn’t wish it on anybody especially my own little boy.

Why some children with autism may hate the 5th November

It’s almost here, the one night of the year that has my son crawling around on the floor like a solider in combat. 

The 5th of November is bonfire night and as much as Little man likes watching the fireworks at a distance from the safety and comfort of the living room window, it’s a whole different ball game when outside.

In a way I’m extremely thankful that we know it’s on the way so we can therefore avoid being outside on that evening. However I’ve noticed that the fireworks are already lighting up our skies. 

That’s when It’s most difficult, when he doesn’t expect it. He will flip out and quite literally drop down to the ground. It’s not only the loud whistling, sizzling & loud bangs that frighten him, his also frighten that they are falling from the sky on top of him.

Again I think that much of this comes as a result of his sensory processing, the way in which his senses work. His also got a fear of tall buildings fearing that they will fall and flatten him. I remember speaking to the occupational therapist about this issue who confirmed that it was is in-fact something to do with his sensory processing! It actually has a name which is “Proprioceptive Dysfunction” 

Let me explain a little… We all have a range of senses and one of these sense is our proprioceptive sense which works by feeding the brain information that tells us about movement, and where our body position is in space.

When we received Little man’s OT report it was clear that he had difficulties within all his senses which in some ways made me feel quite sad. 

Well, if your child has difficulties in the sense his Proprioceptive sense isn’t processing as it should be then they will likely experience the difficulties that Little man does. He states that looking at tall building makes his head spin and everything moves around him making him feel that his feet are no longer on the ground. This kinda leads me to believe that when Little man looks up at the fireworks directly above him in the sky, as they explode and drop lower he becomes confused and is unable to sense how near or far the firework actually is.

The above combined with the loudness of a fire display is enough to send him crazy. 

Note: Little man loves sparklers and will happily hold one, this is also confirmation that yes, his fear in fireworks are a sensory problem.

I remember at the beginning of the year, I was out with the children shopping then we met up with a friend to grab something to eat. It was a freezing evening in January so nowhere near November. Can you imagine his horror as we stepped out the restaurant and onto the street where the sky suddenly turned into a mass of beautiful golds and pink as a spectacular fireworks display took affect above. We were already on route to my friends card who was parked a good five minutes up the world. The shops in the high-street were now closed and the restaurant was now way back in the distance! With no place to run he did what he does best in such a situation, he drops. My son is no “tiny little man” believe me his grown. He was ten at the time, far to big to pick up, throw over my shoulder and make a running bid for the car. Like I guessed Little man refused point-blank to get up from the ground and proceeded to crawl instead. 

Can you imagine the looks on the faces of those passing by, some people really are rude sometimes when they point and stare, (is it entertaining seeing a child in distress)? 

My friend ran for the car which we finally got him in, but my goodness it was extremely stressful for him and a memory that will stick with me forever more.

Yesterday fireworks began going off right outside the living room widow. Little man ran towards the window where he stayed and enjoyed the show in till they had disappeared. He then turned and said to me, “Lucky we weren’t outside mum” 

We have been to a few well organised public displays but always get the same result. 

This year I think we will stay indoors, grab some toffee apples and lemonade and put some comfy cushions up at the living room window. 

Lets just hope we are not caught unaware in the run up to the big night. 

The NAS have created a list of tips for bonfire night aimed at families with children with autism

 This can be found by clicking HERE  

If anyone has any tips of their own, do please let us know in a comment. 

Autumn’s frights and delights

The leafs on the tree’s have that tint of brownness, the conkers have started to fall! The air is becoming somewhat noticeably cooler, and as the days go on, I notice more and more children heading to school in their wooly hats and winter coats!

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Well, all except little man that is! His a hater of coats (though his worn them in the summer when it resembles Spain outside the window)

I’ve spent so much money on these things, it’s driving me bonkers!

he isn’t outgrowing them, he isn’t even wrecking them , his just simply refusing to wear them. 

Do I get some deadly stares from fellow mothers when we are out and about?

GOSH, YES…

… You can see just what they are thinking, though the stare of their spiteful eyes…

“SHAME ON YOU, HOW CAN YOU CALL YOURSELF A MOTHER”

Raincoats are the biggest No, No!

Trust me, put one of them things near his skin and he’ll eat you for tea. 

A tactile related & highly upsetting meltdown, will be delivered quicker than you can possibly redirect your horrendous mistake.

Then there’s the issue of scarfs! 

I try to keep my baby warm, his hyperventilating accusing me of strangulation!

Wooly jumpers, Please don’t!

“I wanna get out the door alive”

Gloves, make sure there the right material, fingerless are my best bet…

despite the fact his fingers may drop of with frost bite!

This is what he likes!

I love the colder months, the festive events that near! 

I love being by the warmth of the fire, while a casserole slowly cooks in the oven releasing that savoury aroma.

I love the autumn smell that you get in the air and the extra bedding loaded on my bed at night!

I love the 5th November when the bonfires alight and the fireworks fly up into the dark musty sky. 

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Fireworks, these send Little man into almighty panic, throwing himself down onto the ground and army shuffling out of sight!

Oh Yes, we are now passed the fear of sun burn (hence the coat in summer).

Little man will no longer need to run from the buzzing bees & warps or shake his head at the flying ants

But with the fall of Autumn comes a whole different set of sensory related triggers & anxieties, ones you would never have imagined!

.Related articles

• Autumn is Here! (ontopofbutterflywings.wordpress.com)
• Autumn Discovery (prairiebirder.wordpress.com)

“Please Save me from the falling buildings”

It’s the 29 Th. April 2011 and the day of the Royal Wedding. Its getting late and has started to rain, within what seems like a second I’m wet through.

Stood on Waterloo bridge in bight red heels, “Heels I so, regret wearing!” I’m tired, becoming cranky and just wanna go home!

One problem! Little man wont cross the bridge.

Myself, a friend and my daughter had just started strolling across the bridge when little man shouted, “No, no, no! I’m not walking across that!” He stood very still with an expression of fear spread across his face. He shook his head repeatedly and started to mumble something which normally indicates his nervous.

Did I know he had a fear of this kind? Nope I truly didn’t! I can’t remember us ever having to walk over a bridge before (his fine with driving over them it’s just walking that presents a problem).

It hadn’t rained all day despite the predictions, the Royals married on a gorgeous sunny day. Well, that was in-till now! I was quickly losing the will to live as I tried desperately to persuade Little man to cross the bridge! The prospect of having to get the train one stop to avoid it was one I didn’t fancy having to contemplate. Then there was the fact I wanted to get a picture of the stunning views of the River Thames that I must say looked stunning on this particular night (despite the rain). The London Eye looked incredible, all lit up in blue and red, the colours of the union Jack in honor of the newly weds.

My friend took over and somehow after what seemed like ‘forever’ little man walked across the bridge.

The rain had stopped and despite how heavy it fell, it lasted no more than a mere 30 minutes (nonetheless it was enough time to soak an entire family)

The mission back to Waterloo east station would require us to walk past the London Eye. As we got nearer I suddenly realised another problem was about to unearth itsself! Little Man was now refusing to walk past the wheel. His anxiety levels rose and he become quite panicky.

“Please mum… I don’t want to walk past it, it’s to big, I’m scared!”

“What are you scared of darling?”

“What do you mean what am I scared off, I’m scared of that thing, that’s what I’m scared of!”

Well, didn’t that tell me!

This time there was no reasoning with the little guy and it was apparent by the frustration on my daughters face that she had now had enough and looked forward to a hot chocolate and her lovely warm bed. I looked at little man who now had his hands spread across his face in a desperate attempt to conceal his eyes from his surroundings, while shouting, “COME ON MUM, COME ON! ITS GOING TO FALL ON US IF WE DON’T GO RIGHT NOW, FOR *#*# *#*#”

Yes, bad language was flowing freely from the mouth of my little guy, he normally does when anxiety kicks in!

I knew from that moment we wouldn’t be walking past the beautifully lit London Eye and that this time not even my friend would be able to use her magic ways of persuasion, just as she had done on the bridge.

Now, did I know he feared the London Eye? No! However I had learnt through recent events that little man feared very tall buildings.

It was about three weeks pervious, when I decided to take the little dude on a visit to Canary Wharf during one of our ‘special transport days’ For those who are wondering what this crazy lady is chatting about, a ‘ special transport day’ involves little man super indulging in his special interest of transport by riding on the trains, tube, bus, dock-lands light rail, and not forgetting the clipper that jets across the River Thames into Greenwich or Westminster. Though this mum would like to see her little man splashing about at the swimming baths or playing with the other children in the park she wouldn’t have it any other way as seeing the enjoyment in his eyes makes it more than worth it (even if it does mean she has to be a transport enthusiast)

However once at Canary Wharf I could no longer see that same ‘enjoyment’ in my little mans eyes, Instead I saw fear. Stood amongst the skyscrapers Little man dropped to the pavement to the safety of the ground. I had never seen him react to anything in such a manner. I had clearly brought him to an environment that he could not tolerate.

Canary Wharf Isn’t to far from the London City airport and as a result the skies above see quite a bit of air traffic. As you can imagine this creates quite a noise as the sound of the aircraft bounces of the skyscrapers. This sent the little guy into an even bigger frenzy of panic.

As per-usual there were those that stopped for a look, this time it was different though, purely because my son wasn’t having a meltdown, this was in-fact a lot different, he was reacting like the terrified child he was instead of a child who come across as ‘challenging’ Nonetheless this was challenging for me, I still had to get him off the floor and back onto the tube.

Of course I succeeded but this wasn’t without lots of reassuring and encouragement. Back on the tube little guy questioned himself, he said he never thought he would be scared of buildings and couldn’t understand what went wrong! He said he was now feeling a little stupid. I explained that he shouldn’t feel stupid as it was a common occurrence, more than some may think. I wasn’t just trying to make the little guy feel better (even though this was of course my first priority), I was actually stating what I believed to be true, after all I was the same as a child. Once I explained to him that Mum had once felt that way, he really engaged and we discussed it all the way home.

It turns out that like me as a child, little man had felt dizzy and sick, his head went funny and his body wobbled! He even described a butterfly feeling inside his tum which he informs me was a very strange feeling. I think what he meant or at least tried to describe was the  feeling and  an experience of vertigo caused by his vestibular processing.

From the age of two I used to throw myself out of my buggy and lay on the floor every-time my mother or father pushed me past a bill-board poster. It took sometime for them to work out what was going on but they finally did, especially when my father took me on a crane where he worked and was presented with a little girl screaming her head off while shaking so forcefully that the crane wobbled (Well, at least that’s what my dad claimed *giggle*).

It’s funny as now I’m older I realise that I myself had quite a lot of sensory processing problems. I like my little man was and still am to some degree… tactile defensive!

You see, it’s not just the issue of fear here! This was a sensory issue for my little man. Well, it was defiantly a contribution of the two. Little man is also worried of a terrorist attack, something I should have considered before taking him there! Skyscrapers, aeroplanes and the feeling of being out of control on top of the vertigo was a tad too much for Little man while at Canary Wharf and seemed to be that same way now.

After a long day and night I decided that we would not walk past the London Eye, after all he had already faced his fear on the bridge (proud mummy)

I wrote this blog as I wanted to show how such issues can pop up out of nowhere, how it’s important to be aware of the possible triggers of anxiety, the achievements our children can make (the bridge), and also how I see a little bit of me in my little guy! No I’m not an Aspie but I’m his mum and his bound to be a little like me after all 🙂

It’s funny as a child I considered myself a bit of a nut job! what with the need to bite my sleeves even though it drove me mad, the fact i couldn’t deal with polo neck jumpers and school shirts, the way I hated G-strings in my early twenties lol (comfort babe is me) Oh, there are many more and I assume such issues of sensory processing disorder (SPD) were non-existent when I was a kid (now i feel old) Maybe if they were I may well hold the label, but then again I guess many of us would.

THREE SICK BULLIES TORTURE TEEN WITH ASPERGERS, AND GET AWAY WITH IT!

Reading the news often makes me feel utterly sick and feels me with total terror, so I do try to avoid it as often as seemingly possible. But its everywhere you don’t even need to tune into a news station on the television or radio, pick up a paper or search the internet, because networks such as the all to popular Twitter and good old Facebook have become news broadcasters in their own right. It’s considered a fact that these social networking sites give us the news before its even aired on the national news! More then likely before the journalist has even got his foot through the door of the all to often “Crime Scene” So I guess the term “Seemingly Possible” was a draft dizzy expression to make!

So yesterday I’m trolling through my Facebook, like to many of us do! Only to come across a disgusting, stomach wrenching news-feed updated by one of my favourite pages “The National Autistic Society!” The, Headline reads:

“This week, three men who brutally attacked a 17 year-old with Asperger syndrome were let off with just 80 hours of community service.”

Clicking on the link provided I found myself faced with total shock horror. This countries justice system was truly confirmed the joke we all suspected it to be. Believe me, I’m not just ranting because this boy who was so brutally attacked in a sickening three day ordeal was on the autism spectrum (Though yes this is a major part of it!) But I would also rant if the person subjected to this degree of torture was what societies describes as, “Neurotypical” However this crime was inflicted on a person who was vulnerable and “disabled” Making this one ghastly disability hate crime!

” WARNING! LEAVE NOW IF YOU DON’T WISH TO READ JUST HOW HORRIFIC THIS ATTACK ACTUALLY WAS!”

The three sick & twisted criminals known as Jack Bolton, Andrew Griffin, and Nathan Marshall, all 18 years of age, from Manchester (uk) & known to the police, subjected their 17 year old autistic terrified victim through an unendurable attack, why filming it on their mobile phones. They filmed themselves proudly torturing their teenager victim. The victim who has a diagnosis of Aspergers (a form of autism) was treated in such an inhuman way that it is a total disbelieve that they were not sent to jail to rot. The Scumful three pelted their victim with dog mess, scratched his limbs with sandpaper, kicked and jumped on his head, beat him with a tennis racket and then forced him to drink vodka and gin until he passed out. A National Newspaper The Daily Mail wrote:

Mobile phone footage showed the yobs laughing and joking as they made him endure other abuse and, in a final humiliating assault, they applied adhesive tape to his genital area before ripping the tape off.

It is in my opinion that after reading this story, posted by the Daily Mail and the National Autistic Society’s Facebook page “Judge Jonathan Geake” who imposed this despicable insulting “so called sentence” of  three-month curfews and ordered them to carry out 80 hours’ unpaid community work as ‘an intensive alternative to custody’ is a prime example of  what our justice system is today. “AN UTTER JOKE!”

The victim will live with this horrid disturbing attack for the rest of his live. My guess is he has been left with no confidence or trust in the human race. Instead he is left with just a body crippled by fear. How will this teenage boy ever live a full and independent life now? Yet these beast are allowed to roam our streets, serving a mere 80hrs community service. 80hrs is just a little over three days. Is it bad enough they were not sent to rot in their cell but instead be given a sentence of painting youth clubs or even worse maybe in our schools amongst  our vulnerable children some likely with Aspergers the same condition as their victim! Yet this so called community service order, that is an insult to the word punishment is for a period not even totally four days in total! (If added together that is.) Gosh I give my children a harder punishment for fighting with one another. I’m not stating I know what and where such community service will be served! I’m merely stating that we as a nation see it all to bloody often. Giving something back to the community! Is a term used all to often within our failing justice system. “Yer right” Are they planing to give that young victim his life back? Give him the confidence to go out and meet people, walk the streets free from fear of unprovoked attacks from monsters like these scum-bag offenders? “NO, I THOUGHT NOT!”

The Daily mail online state that Senior police officers and an MP have branded Judge Jonathan Geake sentence “a joke” and like the National Autistic Society, have called for the sentence to be reviewed. The National Autistic Society has launched a campaign where you can get involved. By clicking on the link The national autistic society above, you can tell Judge Jonathan Geake just how wrong he got it! Or visit The Daily Mail Online for the full story including the mug-shots of these low life scum bags who are free to roam our streets and a picture of the “wonderful” Judge him self Jonathan Geake.