Thank Goodness Its Over

Firstly, let me start by wishing you all a very happy new year. Here’s hoping all your hopes and dreams are granted this year.

We may only be in the first few days of 2013 but what an eventful few days these have been… Well in our household anyway! With the children still off school it sure hasn’t been quiet!

Little man’s routine has gone totally off course and once again as a result I have a child who sleeps all day and is awake all night. Yes, I do drag his backside from his pit most days but when you’ve spent most the night awake yourself it is kind of tempting to let him sleep. One, your able to get stuff done and two… Have you ever tried dragging a 12 year old boy from his bed? Especially one who has the tendency to wake in a super foul mood? I rest my case!

Still, its to be expected I guess! Christmas and New year does tend to interfere with the body clock of a child on the autism spectrum. OK, he isn’t the best of sleepers generally, its just that bit worse these past few weeks. That’s why I’m kinda glad its all over now… Well it will be once the children are back at school. I don’t wanna sound all ba humbug, I actually love this festive time of year though I also love a little normality in the house (not that we are your average family on most days but I guess you get my drift).

So… Let me tell you a little about our Christmas and New year…. There was lots of fun in our house. Christmas itself was really pleasant. Yes, dinner was a tad later than expected, but it was actually really nice and chilled. That’s as chilled as Christmas can be! I know for some it can be a really stressful day. Especially when you have a child on the autism spectrum who likes everything to run like clockwork. However, this year we managed an almost stress free day. Keeping things small really helped. There was no huge family dinner, just me and the kids and their father. We briefly popped to my mums in the morning which was really short and sweet, then we sat watching Christmas TV with a load of Quality street within reach. Dinner did ran a little late as mentioned but I blamed the Turkey! It had clearly been living in another time zone when living as it had no intention on playing by the rules and cooking in accordance with the timescales so clearly stated on the packet. Little man did get a little stressed at this point but so did I. Maybe it was a mix of his Aspergers traits and that of hunger. I’m guessing it was more of the latter as I know I was close to starting on the pudding I’d prepared at some point.

As mentioned in a previous post, that of Boxing Day didn’t go so well. With no schedule as such little man was handed a dose of the post Christmas blues and handled this in the only way he knew how… With a Good old fashioned meltdown… Little man style.

As the days passed, Little man kinda felt as if he was in limbo. The week between Christmas and New Year is a hard one for little man and I can kind of understand why. I swear, even I was unaware of what day it was occasionally. With money spent up on Christmas I found myself with nothing else to do but watch television and even I was getting pretty bored of this. What with one day being a holiday and the next day not, supermarket opening times still up in the air and not knowing if the rubbish would be collected or not (not great when you have a bin full of turkey bones, rotten veg and a truck load of gift wrap) you can’t blame him for the confusion… or me for the lack of schedule planning.

As for New Years Eve, well, this was spent with my mum. Just myself, mother and the children. So again a pretty quiet family affair (that’s if you don’t include the noise that was coming from little mans direction)!

You see, little man gets somewhat excitable when it comes to New Year. He is petrified of fireworks, but only when stood beneath them, so the prospect of watching them on the television is one of great excitement for him. As the stroke of midnight grew closer little mans excitement was growing off the scale. He had come up with this wild and somewhat bonkers idea to do his own countdown for the benefit of his youtube channel (have I not yet mentioned his growing fascination with creating videos for youtube? Another time maybe). Anyway this meant that he wasn’t only sat filming the mental piece clock but that of the TV. As the stroke of midnight finally came we were not only greeted by the sound of the fabulous London firework display on the TV as well as a somewhat loopy firework hating barking dog running around mums living room but the sound of little man as he commentated the whole thing in his own unique style (sweet you may thing but you were not the ones reaching for the Paracetamol so early on in the night)!

So… There you have it. With all the festivities well and truly over I’m just about ready for the year ahead. I have our holiday to butlins in April to look forward to but before that I have a monster high themed sleepover/party to organise for a very excited 9 soon to be 10 year old daughter…. The joys of being a kid!

I hope you all had a wonderful Christmas too…. Heres to a splendid & wonderful 2013.

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 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!

 Tonight is the 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 our 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 child and adults on the spectrum will spend the year dreading it! I wrote a few weeks back 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 think 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 below and uploading as your profile pic on your social network” after all it is just one day!”  

 

Related articles

• Why some children with autism may hate the 5th November (aspergersinfo.wordpress.com)

The stranger who got right on my wick

I like to write about the positive side to Asperger’s after all the first two years of this blogs content, was filled with nothing but rants, brought on by a mix of discrimination & my battles in obtaining appropriate education for Little man.

 However, I’m really sorry to do this to you all, but this is in-fact a “Rant” 

 Sometimes life isn’t all rosy and you need to unleash the not so good stuff… Today is one of those days!

 There are a few things troubling me that I need to get out my head and onto the blog, somehow just letting my fingers do the talking for me, helps me to adapt my mood and somehow go about getting on with things.  

 Now, the first is one that I’m convinced most will read and think, “Get Over It” and to be honest if you did, you would properly be right in thinking this, I should just “Get over it” I know this! However there are some days when something like this happens and it’s just the icing on the cake (so to speak)! 

 What am I rambling on about, I haven’t even told you what it is troubling me, yet here I am trying to justify my own thoughts! Well, basically I am hacked off by a person I’m pleased to say I have never had the privilege to meet, a complete and utter stranger who really shovelled a generous amount of judgemental bull in my direction! 

 So what! I deal with this shit daily, right? True! However I wasn’t in the most stable mood this day (Note this was a few days back) I was actually darting to a Halloween party in an attempt to save my panicking 11-year-old with a diagnosis of Aspergers, from a pending firework display. My iPhone pinged and alerted me that I had mail (email) this is when I discovered the comment below. 

I was reading that one difference between boys with aspergers and girls with aspergers is that girls mimic people around them and end up blending in with neurotypical people. I believe aspergers has a genetic base. I think you and your daughter also have aspergers. It also sounds like you favor your daughter over your son, and he notices and resents it. The most annoying thing with mothers with aspergers is that they think the way their children are acting is somehow done on purpose just to frustrate, like they thing they are the center of the universe, them when in fact children with aspergers are just trying to do what’s best for them.

  Yes, I’ve had crap like this before but this however really rubbed me up the wrong way. Now here’s what drives me that bit more crazy… You get dealt this type of ignorance, become somewhat fired up, yet all you can do is leave an angry “Mind your own business” reply, containing a fair portion of swear words (which I just about reframe from adding) as well as a load of typos that occur as a result of your mad frantic typing! Then you wait… and wait… In reality I don’t want to get into some full on bitching match with this numb nuts above, yet somewhere muddled within the haze of my angry mind, I want to see his response and I want it now! Yet it never comes, ever!

 I’m my head I was screaming you cheeky patronising *#¡# how dare you read just one, just one post and think you have the right to judge me as a parent! 

 What’s more, what right do you think you have to diagnosis not only myself but also my daughter as having “Aspergers” Goodness me, you have never even met either of us. 

 Oh… and you can cut the other crap about my son acting out his aggressiveness in the direction of his sister because he feels she is my favourite, thankfully you really don’t know me.

 Yes, this asshole thinks he knows it all, when actually he doesn’t even know the slightest. I don’t care if the individual has a diagnosis himself or is even a parent, he still has no sodding clue about me and my family!

 Here’s the thing people! I spend hours punishing myself mentally, due to the guilt I feel every single day! Guilt towards my daughter! Why? Because she deserves so much more attention then I have been able to offer. I spent days and nights, writing to schools, filing in complaint forms, collecting evidence for a discrimination case and more besides.

Then there were and still is the trips to CAMHS (child adolescents mental health service) the nights he sleeps in my bed though his far to old, yet if my daughter asks I have to state she can’t and this is purely because Little man would never sleep and likely complain with every movement she made. So, why not refuse to let my son? Consistency is sometimes hard to withstand when its 4am and his been sat outside your bedroom door since midnight in tears! 

 So, when I sit there thinking about this stranger who I have never met, sat at his computer typing this judgemental bull, when this mother has not had a wink of sleep in three days I tend to become a little bit touchy! 

 I would like to state quite loudly that although I love my son with Asperger’s and try to activity embrace the diagnosis, No, myself nor my daughter have Asperger’s.

How this conclusion was drawn from that one post almost makes me want to roll on the floor laughing but at the same time really rattled my cage!

 Now, here comes trouble number 2! I’m worried that once more, yet on a worse scale, my son’s aggressive and growing violent behaviour is going to draw to a serious end but only when his seriously hurt someone (who knows, maybe this won’t even draw an end to it)! 

 At 11 years old his tall for his age, and is no longer the skinny little boy he once was. His gaining strength and today he punched and kicked me so hard I feel to the ground. This was only after he had finished with his sister and I’d tried to intervene. 

 I hear the same thing from high-end professionals who claim that removing the trigger will solve such issues, but what if the trigger is his sister, seriously she only has to like something he likes for him to feel it’s justified to give her a dig. Planned ignoring wont help either! You can’t ignore one of your own children who you love dearly beating the hell out another, it’s just not  worth contemplating. 

Related articles

• Brain Science of Aspergers and Autism Pt. 2: Anger and emotion (wizzkids.wordpress.com)
• Just because I love him (aspergersinfo.wordpress.com)
• Aspergirls: A Subculture Within a Subculture (psychologytoday.com)
• Siblings and Autism: How Are Kids Affected by Special Needs Brothers and Sisters? (blogher.com)
• Brain Science of Aspergers and Autism Pt. 1: Sensory Overload (wizzkids.wordpress.com)

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)

A new year

Just a short post to wish you all a very happy new year. Let’s pull out all the stops and really do some work to raise awareness for autism this year.
Our new year was pretty cool as well as having some friends over we went and watched the stunning display of fireworks over the river thames London. The London eye really did look fab. We did hit one problem with Giovanni. The fireworks really scared him and he had to be taken to the car off’ I was concerned we may have to face a problem’ but giovanni is ok on 5th nov but then again we have not taken him to a big display such as this one before. He felt as though he was in danger that they may fall on to him and touch him. He was fine once back inside the car with his dad. I just know better next time. I’m looking forward to the year ahead. I’m planning on really adding some good content to this blog to make it as helpful to others as I can.
I wish you all the very best for 2009 and if you are stepping into the asd world then I hope you decide to check back and visit the blog again as it has been off some help to you.