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.

#HAWMC Day 27 – Difficulties and Victories

Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!

So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!

Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.

Things I find most difficult

1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.

2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!

3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.

4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.

5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.

Victories

1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.

2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!

3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.

4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.

5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.

So, there you have it, my little list of 5’s.

This post is 27/30 in the #HAWMC

Ruby Wax – Depression isn’t having a bad hair day!

Have you ever had one of those moments, when what you’re seeing is so… hilariously funny, yet, somehow powerful enough to move you to tears? Something so thought provoking it leaves you with a strong desire to talk about it? 

I have!

I was greeted by a delightful tweet earlier in the week by the fabulous Britmums! A tweet informing me that I had won their competition, bagging myself a pair of tickets to this weeks WOW (Women of the world) Festival, located at London’s Southbank. What’s more this included tickets to see the play “Losing it” and a chance to meet the star “The Lovely Ruby Wax” following the performance.

I’d previously heard about the show, which also stars the very talented  signer-songwriter “Judith Owen” so had some knowledge of the plot. What excited me most, was the fact this wasn’t set to be your average play, Ruby Wax was actually on a mission to break the stigma associated with mental illness, this would be her being open and honest about her own mental health while somehow keeping it comical! 

I’d never seen it done, the only time id ever seen a comedian raising such a subject was by cracking non tasteful jokes, laughing at those with the condition, as opposed to laughing with them! I was intrigued to discover if and how Ruby would achieve it!

Well, yesterday morning I found out….

“Losing It” is the complete opposite to the above, its made up of an extremely funny, yet thought-provoking script that really is capable of causing you to fall of your chair as you pee your pants laughing or draw a tear as its strong message buries itself deep within you. Judith Owens amazing voice with powerful lyrics combined with the hilarious yet informative words of Ruby Wax, together create something amazingly powerful, something that grabs a hold of you, leaving you replaying it in your mind once its over, therefore proving it to be the powerful awareness tool it set out to be!

Here’s what they say about “Losing It” over on the official website

Ruby Wax had it all – career, dream house, husband, kids, so when was the moment she realised she was the 1 in 4…

Somewhere between painting her kitchen beige (again), realising she didn’t own a life manual or comprehend the contents of a children’s party bag?

Ruby’s acerbic, honest humour and Judith Owen’s touching songs are both poignant and laugh-out-loud funny. This show gives you the chance to explore the ups and downs of mental illness, its stigmas and the freedom you discover when you share the darkest moments of your life.

I may not have had the same life as the lovely Ruby Wax! I didn’t attend drama school and bag myself a carer as an actress or comedian, but I did create my own wonderful family consisting of three beautiful children. However, like Ruby, this didn’t stop the hand of depression, it didn’t cure me of the ongoing anxiety attacks, severe OCD and the up and down eating disorder, all being an active part of my existence since childhood. 

My head nodded furiously as Ruby touched on the feelings of shame one feels because this is an illness located in the brain rather than another organ in the human body! Ruby is right, Mental illness doesn’t care who you are, celebrity, doctor, mother….  If your one of the 1 in 4 that mental illness has chosen to capture, than status holds no ground, we’re all human after all. 

Ruby becomes an open book, she tells her story by doing what she does best, creating laughter! I don’t know anybody who has managed to talk about depression for an hour or more without causing its audience to leave with their heads hung low.  

Oh, and it seems that Mental illness isn’t all Ruby’s clued up on… Oh no! She seems to have the whole relationship and marriage thing sussed out pretty well too! Now, I really don’t want to ruin it for those who are yet to see the play, lets just say, I almost choked on my own tongue laughing… Ruby at her best!

Both ladies make this sensational entertainment, the sheer fact that together they have created something so funny from such a serious issue, without damaging it, is fabulous, and reminded me how talented a comedian Ruby really is. This show left me wanting to go home and help break the stigma, while allowing myself to let go of any shame I may still hold regarding my own demons. As a woman who has been to crazy town and back again, as well as a parent to a child with Asperger’s who suffers greatly with anxiety and depressive moods, I’m with these ladies! It’s about time our society realised that depression isn’t having a bad hair day or feeling sad! Stop offering us tea and telling us to perk up… tea and ignorance cure nothing, just piss us off that bit more!

I’d recommend everyone checkout “Losing It”, if this doesn’t change ones perception of mental illness, then quite honestly nothing will! Having already performed for all branches of the priory and a large number of mental health wards up and down the country, “Losing it” brought the play to the public by going on tour  last year! Both the public and media seem to love what these ladies do, with a large number of glowing reviews and feedback from your national news papers, your average tom, to celebrities such as Annie Lennox. 

I was lucky to have a quick chat and grab a picture with the lovely lady herself see belowOn the whole, a great way to spend my Friday! A large dose of appreciation is on its way to Britmums for the tickets and a double dose making its way to Judith Owen and Ruby Wax for their truly inspirational play and attitude to metal illness… your all great! 

Check Out the official site for show dates (currently offering special price of £25 for their planed shows in London’s West end in August) click HERE for details

Please check out the Black Dog Tribe a social network/forum and informative website where members can share advice, connect with one another, get all the latest news and updates on mental health and current campaigns and developments! Both Ruby and Judith are a big part of the network and encouragement you all to go and say hello, speak out, gain comfort and break down the stigma  

Here’s a taster I uncovered for you on youtube 

Lastly those attending Britmums Live, don’t forget Ruby wax is a listed speaker, so if you haven’t got your ticket by now I’d suggest you wiggle on before its listed as a sell out.

 

Questioning your coping mechanisms

Image by rosefirerising via Flickr

Some days are great and others… not so great… yesterday was one of the latter!

Unfortunately a family row commenced at home yesterday (something I wont go into on the blog) however I do believe that as a result of this, a series of high-profile challenging behaviour was demonstrated by my little man. In all honesty, the behaviour was off the scale and I really did struggle to maintain sanity!

I do understand that arguments should not break out in front of children, especially those on the autism spectrum, already easily tipped into an overly anxious state of being, but I’m human and there are times certain situations commence, especially when you find half the arguments are caused by something or another your child on the spectrum may have done or said, worse the person who is arguing with you just can’t leave it a lone, refusing to stop!

I thought it would properly be a good idea to take the children to my mothers, we could see my mum and chill for a bit! Little man could spend some time playing the PS3 with my sister’s boyfriend and all should convert to something far merrier! My plan was going ever so well, though as the evening approached, little man began getting worse and worse… before I knew it, he was throwing a load of nasty swear words at me, why proceeding to kick, punch and lastly spit at me.

God I felt like running away and staying away! When your child has a tendency to throw a load of offensive nasties in your face, you tend to get used to it (in a wrong kind of way) though sometimes such obscenities hurt a thousand times more than any violence… and this time his awful name calling was becoming much to hard to bare. Little man finished his almighty meltdown with a hard punch in my arm and a thump in his sisters back, all while his little brother of two sat screaming! It was at this moment I actually thought… Maybe it would be better if his not here any more, maybe he should live some place else!

I felt such a mix of overbearing emotions as I tortured myself over the thought that had entered my head! I felt assumed and heartbroken how I could even think such a thing! Yet.. at that time as he stood showing no remorse for his actions and I watched how he continued to lash out at his sister, I know I couldn’t help it, I just couldn’t! Every time I stood trying so hard to reason with him, he’ll just laugh and swear! I seriously felt complete despair, lost on where we go from here! I just felt like going to bed forever!

Day’s like this, I wonder what happened to my Little red-haired boy? Though he was always noticeably different, he would sit watching his favourite Thomas video or sit happily playing (even if it was mainly alone… he seemed happy, that’s what counted)! Not anymore! I just see an angry child, who gets anxious, depressed, violent, and often acts in quite an evil and scary manner!

As my Little man grows into someone who actually doesn’t resemble that of a little man at all, I fear for him, I fear for us as a family! At 11 he is reaching the stages of puberty and with it I notice so much more anger, the ability to care less about the people who get hurt in the cross fire. I therefore question my ability to control such behaviour, longing for an answer! As the little man grows bigger, stronger and sadly more violent, I worry he will hurt himself, me or his siblings! Though there is one thing that I fear that little bit more…. Asking for help!

Related articles

• Christmas Meltdowns, Supermarket Style (aspergersinfo.wordpress.com)
• Understanding Autism Spectrum Disorders (everydayhealth.com)
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NEVER EVER AGAIN

This is the post where I try to explain why I never want to take my child with Aspergers on holiday ever again.

 Most of you will know me as the mother who is first to state that, ‘Just because a child is on the autism spectrum, doesn’t mean they should not be given the opportunity to enjoy life’s pleasures such as day trips and holidays’ I stand by this, really I do!

 Now, I will try my best to put into words what I can only describe as one of the hardest, emotional draining and tiring, three days of my entire life.

 This past weekend saw me on the edge of a breakdown as myself, good friend Donna and three children (Little Man aka A boy with Aspergers, Alice-Sara & Harley) embanked on a mini weekend Christmas break at Butlin’s Bognor Regis.

 I had been extremely lucky to be invited to the tots100 Christmas party which meant an awesome deal on accommodation and presented me with the opportunity to also bring along the family. I will talk more about the Tots100 Christmas party and Butlin’s itself in another post, right now I need to get this out my system!

 It’s never easy taking Little man on days out and its even harder trying to embark on any type of Holiday no matter how short or long it maybe. The change and the anxiety mixed with the unknown often brings about havoc, and if you have ever read any of my post relating to such event’s you will already know this (remember the camping trip or even the day trip to Chessington)? 

 Nonetheless, when stating like many do “Never again” I somehow never really mean it and with passing time I find myself trying to do it all over again! Why? Because his my son and I don’t want to leave him behind!

 Despite things starting reasonably well (his delight over the funky hotel lighting which was a sensory pleasure was most welcome) things soon turned sour and within an hour or so all hell had broke loose.

 OK, Ok, I half expected this! After all we have just arrived, everything is different and a mix of both anxiety and excitement fills the air. 

 After a soak in the bath, just before heading to bed he started to argue with his sister. I know arguments between siblings are the norm with most children, but these really are over the top, Little man becomes far to angry and loses his temper rapidly. Worse still his now able to throw an almighty punch. On trying to break up yet another blow up that had become somewhat out of hand, Little man thought he would also hit out at me, not only punching but kicking me too. His not a baby anymore and his growing which I guess kind of worries me if I think about it!

 No, this isn’t good, I don’t show him that I’m frighten of him, I’m actually not, I’m just worried that one day he will go that bit too far!

I don’t like having to restrain my own son but it did have to be done before he hurt himself or somebody else, it was then he spat in my face and then laughed inappropriately. 

 The fact that his violence stopped and I thought we were over this hurdle makes this so much harder.

 After lots of tears Little man finally slept and I convinced myself that as the days went on things would get better, however they didn’t and despite trying to structure all the activities his need to control everything and everyone around him was just too much. Yes, I know things are hard for him, but there were stages of that holiday that I felt like running away especially when he carried on hitting out at me leading me to seek first aid for what was a suspected broken finger (I had pointed at him and he had hurt my fingers so bad I had no choice but to get them strapped up). This was the last day and in all honesty I was so thankful it was. By now I had cried till my eyes were sore and seriously felt like smacking my own head repetitively against the wall. 

 Harley also spent the best part of his second birthday amongst meltdowns and my pleads for a little respect and if anything a five-minute break. I know many people will think, “It’s hard for him too” Believe me I know that, of course I do! I didn’t care about the disapproving stares as Little man hauled abuse at me, I did however feel terrible for the children stood in ear shoot of his language. There was even one episode that resulted in me having to leg it out of a local fish restaurant leaving my poor friend with three kids, one who wasn’t in the friendliest of moods. 

I sat on a bench looking at the sea and really felt like I couldn’t return and carry on with this job called “Parenting”. I left a message on my Facebook page which read, “I don’t think I can cope with Little man’s behaviour anymore” and at that moment in time, I really did feel this way.

 My friend said something to me as we sat talking in the hotel once the children were finally sleeping, she said “I can honestly say I have never seen Little man 100% happy unless his indoors” I thought about this and realised just how right my friend was.

 Once we did finally return home, a lot later than expected following unexpected car trouble (the word unexpected is not one little man favourites) I noticed how his mood calmed! Yes, he fights with his sister in the comfort of our home and yes he can still be abusive, but as I sat watching him cuddling his younger sister watching the end of Eastenders (yes, cuddling, the cheek of them, I know) I realised that in-order to parent and parent Little man well, It needs to be at home (well, at home meaning not on holiday)! I’m not stating I’m NEVER TAKING HIM ON HOLIDAY AGAIN! Though I did state this more than 1000 times during the course of the weekend, I’m just stating that for now, and in-till there are clear signs of improvement in this type of challenging behaviour and yes, my ways in coping and dealing with it, I will not be booking any family holidays in the near future… and that my friends is a ‘FACT’!

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• Preparing my child with Aspergers for our family festive break (aspergersinfo.wordpress.com)
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A week in Little man’s shoes

Image via Wikipedia

Little Man’s  had a not so good week, lets just say it’s been somewhat trying! Sadly I had a funeral to attend at the beginning of the week after a family member passed over. Mid-way through the week Little man throw an unexpected yet almighty meltdown at 8 am and was impossible to clam! As his transport arrived and his escort knocked on the door to collect him, I knew it would be an impossible task to get him out that door, and it was just that! This resulted in him not attending school, despite my attempts to persuade him to leave the house and let me take him on one of his favourite modes of transport, ‘The Train’

In all honesty Little man has been a little off the wall the entire week. Of course the events of the past few weeks didn’t help, he finds it hard to understand how people pass on and especially so suddenly. It was only March this year that a friend of the family passed away, again it was sudden and confused Little man a great deal. After speaking to his teacher over the phone, I was informed that when the receptionist had called down to speak to the class teacher, Little man had answered the class phone and reported back to the receptionist when she asked to speak with the teacher, that she couldn’t come to the phone as she had died suddenly!

However it’s not just the whole situation surrounding death that’s bothering him, though I’m not actually to sure what else is.

I do worry somewhat, as I am still fighting the nightly battle to get Little man to complete any homework, this goes for the revision of spellings and even reading his reading book! He reads to himself, yet this doesn’t enable me to judge how well his doing in-order to report back to the school.

Another issue lately is the return of the tummy ache, through I think this maybe entirely anxiety related! His teacher reported in his contact book that he had suffered a good proportion of the day with this discomfort, I was called but was unfortunately out for the count (I dunno what happen that day, I just crashed out, but goodness… I must have needed it)! He did still have the tummy ache once home and after some soup and a little rest on the sofa, he perked up somewhat and trotted of to engage in a game of Sims (which I must add is driving me loony).

As for Little man’s sleeping, well, the Melatonin is now up and down! Don’t get me wrong, if he goes to sleep the pro-long release works amazingly, it’s just getting him to this stage. We made some amazing breakthroughs over the last month, he started sleeping in his own room (which he hasn’t done since hearing the horrid car crash that resulted in half a car rammed into the neighbours gate) So his progress was something to celebrate. nonetheless things again started to slip, and yes I held my ground when stating he will not drag his chair bed into my room but instead go and get back in his warm and cosy bed in his own room! Yet, my son has a fantastic ability to continue begging at my door some 2 hours after having first started and what with him and his sister needing to attend school the following morning, giving in seems my best option, well… at the time it does anyway!

That was a few weeks back, and yer… you’ve guessed it, he hasn’t slept the night in his own room since, which is also my own fault, though I’m just to tired to do consistent right now!

The upside to the week was a call I received from a psychologist at the Institute of Psychiatry, Kings College London. They are currently running a study to piece together the puzzle that surrounds child anxiety disorders for those in children with autism and aspergers syndrome! The study in question is titled ” Evaluation of diagnostic techniques and cognitive and physiological correlates off anxiety in young people with autism spectrum disorders” and the principal investigator is, ‘Emily Simonoff’ at the ‘Department of child and adolescent psychiatry, Kings College London.’ Now, my son is no “Lab Rat” however he is a child who suffers greatly with anxiety, to the point it interferes with his day-to-day quality of life. He has the opportunity to take part in the study which just involves some task done through the use of a computer. They have booked him in for the 1st of December, and we will need to spend the day at the hospital in order to take part. Little man loves computers and he seems pretty up for getting involved. It’s my opinion that as long as little man is fully willing to do this, then why not try to help make sense of it all and maybe one day the research will benefit my son and others like him, after all childhood anxiety is a huge problem, one that I myself suffered at the hands of so greatly as a child.

This wont be the first time Little man has taken part in a study! He was also involved in the MRI scanning for children with autism research, which I must add, made me extremely proud. He faced a host of difficulties when it came to the scanner yet he did manage to stay in position and have some images taken though this was in small sections and each for a very short period of time. Just to get this far showed how amazing the little guy is.

So, as long as we get the letter I have requested from Kings which I want to give to his school in order to hopefully authorise his absence, given that they agree, then we will head to kings on the 1st of next month and hopefully have an update one day soon after.

Well, as you can see, things are really up and down at our end…. Here’s hoping we have a settled and trouble-free weekend.

Oh… and of course… Here’s hoping yours is a good one too!

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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!”  

 

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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!

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