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!”

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. 

A disastrous half-term

Wow! We’ve defiantly had one hell of  a crazy few weeks.

I wanted to post this at the end of last week, but life being what it is, I didn’t stand a chance! You see, our half term didn’t start off too well (Understatement of a life time) The Friday the children broke up from school was going pretty well… That was in till our brand new living room ceiling fell through. “Does this ring any bells?” Those readers of the blog, that have supported me for quite sometime may remember this post “What went bump in the night” posted back in May 2009. Well, It would seem that I’m the receiver of bad luck, that and this sodding house is jinxed! If you are unaware of what did actually go bump in the night, I’ll give you one guess? … Of course it was my ceiling, what else! When the ceiling came down last year (I mean the entire ceiling) I was pregnant. The massive cloud of dust was too much to bear for myself and the children. It set of the fire alarms sending Little man “BONKERS” He had fallen asleep on the sofa, some ten minutes before the stupid thing fell down. Lucky his father was round who thankfully had noticed a strange sound. That strange sound was in-fact the ceiling cracking above their very heads. I was upstairs with my daughter half asleep watching a dvd. Little man was saved by daddy! He had scooped him up and made a runner to safety. Just as he shouted my name followed by something I didn’t understand! (His panicking state had him shouting in what seemed a foreign language)  Before I could ask him to repeat himself I heard the crash. Within seconds the house was like an ash cloud. Needless to say my children were petrified. Little man kept shouting… “FIRE”  what with the dust, smells and fire alarms going off  (who can blame him when he protested that smoke alarms were only meant to discover fire)

That was a nightmare night and it wasn’t set to be our last!

I was in a state of shock when it happen again! The last one fell due to old plaster being the problem. This time it came down with not only a huge crash but loads of stinky water that happened to be hot. I had been complaining about this old, wet, musky smell for weeks. I had to convince myself it was just me or it was something that would eventually  just disappear! I searched everywhere for the cause with no luck at all. It was gone nine p.m. when disaster stuck … Meaning the housing office was closed and I would need to ring the out of hours number. It’s funny! Given the amount of work I’ve had done on the house (most caused by the ceiling collapsing last year) I was remarkably clam. The receptionist on the other end of the line told me so… I think they expected a screaming mad woman. You see I had to go to the paper and kick a fuss to get that new ceiling & the crumbled walls replaced. “I even moved out” It was horrid as Little mans routine went off the wall, all he wanted was to go back home! My daughter was fine given we were staying at my mothers in which she loves. I also had my beautiful new-born  to look after. Though the damaged occurred in May 09 our ceiling wasn’t finished to the September and the walls in March 2010! Now this has happened!

Turns out the plasterers who had done the ceiling had nailed the plaster-board  through a water pipe leading to my daughters radiator. It had slowly leaked (Hence the reason for the musky smell) for well over a year…. In-till I decided it that fateful Friday night, that it was a little nippy in my daughter’s room so cranked up the temperature… Resulting in my living room becoming a flooded bomb site, my son running round like some “lunatic” and a great big mess to clean up! Of course this wasn’t the highlight of my year so far and I’m sure god has plenty more surprises in store. As you can expect despite remaining pretty clam, I wasn’t best pleased!

On a lighter note, the rest of the half-term went pretty well. We didn’t really do or go anyway (About from bus riding, but what’s new there!)

Halloween was quite fun:) Mainly due to the fact that once I had completed a few roads of trick or treating with my daughter I got to go home and have a bit of mummy time. Little man went with his friend next door and his mum, and my daughter then decided to go with her aunty and cousin as apparently I was a tad to slow *giggle* Well, was I complaining? Hell no! The baby was with his daddy and I was completely childless for all of an hour and what a blissful hour it was 🙂 (I love all three of you, but mummy also loves some sanity)

The children’s costumes were fabulous and were brought by my friend who loves spoiling them rotten. My daughter was a classic witch… big nose, teeth, black lipstick and the full outfit. Little man was a monster of some sort and even Harley had a devil dress up (Not that he participated but oh how cute he looked!) We discovered that little man couldn’t tolerate the mask, luckily he kept it on long enough for me to take a picture. His sensory sensitivities also meant he didn’t like the feel of the suit, but once we had explained he could wear it over his normal hoodie and track-pants (He would live in these if I let him) he was fine! Of course I had the dreaded fear he would be rude to people “Give me the candy Now” or “Your gay” (Don’t know why but he is always saying this one) Lucky I needn’t have worried, he was fine and I was told he was actually very polite.… *Big Smiles* I suppose he figured out that in order to gain candy he should just zip it 🙂 Last Halloween was a nightmare as little man throw a wobbler and had a huge meltdown while we were out with a parent and child from his class. Red cheeks and weepy eyes, I had to escort him home. It really didn’t help that I was the size of a beach whale due to being pregnant and just a few weeks from my due date!  Little man could not get his head around my changing shape. He would quite bluntly tell me I was huge (I could always rely on an honest opinion that’s for sure!) Well, he got angry that night and kept calling me fatty. Yep I wanted to be swallowed up whole by the ground beneath me. Pregnancy hormones had me a blubbering wreck, but lucky for me & little man, she completely understood and still remains to be non judgemental when it comes to little man.

So all that’s left now is the 5th of November to contend with. Last year little man did his Army SAS crawl, that gave the impression he was being shot at, when at a public display. Its fair to say we wont be doing that again….…Fireworks will be watched through the safety and comfort of his bedroom window 🙂