roller coaster

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#Autism – #Halloween, #GuyFawkes and the problems they bring!

Published November 22, 2013 by mandzmagee

Oh the issues in our house around this time of the year!!

Theo doesn’t like dressing up, doesn’t like the door being knocked on making the dog’s bark, doesn’t like seeing other people dressed up so that he doesn’t know who they are so Halloween certainly is a challenging time for the poor little soul.  It’s even worse when less than a week later we celebrate Guy Fawkes and his escapades by lighting fireworks that light up the sky and make noises when it’s supposed to be Theo’s down time.

I’m absolutely at my wick’s end around bonfire night (Guy Fawkes) because Theo’s anxiety levels are so high they’re lunar and he’s absolutely terrified.  The only way he can settle is by going to bed listening to the radio on his ear defenders and closing his eyes so tightly it’s uncomfortable to settle.  The sensory overload of visual and audible unpredictability for hours and hours of the night makes him so scared within his own safe space.

The curtain’s have to be closed that he can’t see any little piece of window pane, he has to be under a blanket incase he needs to hide his face if there’s too many flashes at once, his ear defenders have to play the radio … just incase they don’t block out all the noise!  I can’t be too far away from him, infact he almost insists on constant body contact with me, this year he cried every and I mean EVERY time Dad left the house.  Unfortunately when he’s had an upset like this it can take weeks … And I mean weeks … All this began 5th November and he’s still having troubles from the night …  He still doesn’t feel safe in his home 😦

It’s absolutely heart wrenching to watch him so upset knowing that there’s absolutely nothing that we’re able to do to make it all better.  I genuinely wish that organised events away from our house were all that was available to the people celebrating and that they were as far away from Theo’s safe space so that he was oblivious to what was going on.

Here’s a little look at him trying to get settled for the night …

https://www.dropbox.com/sc/qs7vfvaii6w8lxj/0HqCQ-vp5h

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#AutismAwareness – A Very Inspiring Find

Published November 8, 2013 by mandzmagee

Having a scroll down my Facebook friend updates I found myself absolutely inspired by a post that a fantastic UK based Autism Awareness group shared.  Personally I think the author is brilliant in wording her Autism life experience into a comparison that anyone would be able to understand wholeheartedly! I simply had to share with you’s all!! If you’re on Facebook like the group … Their posts are always inspiring!!  Links given at the bottom of the post.

The post went as follows …

Before You Complain

Before you complain about your child waking up too early….
Imagine if your child didn’t sleep at all because their brain and body couldn’t connect correctly…or if they woke up for 3 hours in the middle of the night just because

Before you complain that your child is ignoring you or not listening…
Imagine if your child didn’t acknowledge your presence, didn’t even realize you were there, didn’t respond to their own name or even a loud BANG

Before you complain that your child constantly wants you to play and won’t play by themselves…
Imagine if your child NEVER wanted to play with you or freaked out if you attempted to play with them

Before you complain that your child won’t stop talking….
Imagine if your child couldn’t talk or if your 3+ year old couldn’t even call you mama

Before you complain that your child’s insurance has a deductible or high copay…
Imagine if your child’s insurance had a high deductible and high copays…AND doesn’t even cover what your child needs, even after paying the deductibles and copays

Before you complain about your child throwing a tantrum because they can’t get their way….
Imagine if that tantrum was so extreme that the child was screaming(like they were being tortured) for hours, punching the walls, hitting themselves or you, banging their head on the floor, etc….and even if you give them what they wanted, they are so deep in that meltdown, that it doesn’t help. Or worse, if there’s no apparent reason for the meltdown.

Before you complain that your child had a potty accident….
Imagine if your 10+ year old was still in diapers (that you have to change) because their body doesn’t work right or their body is so undersensitive that they can’t feel when they have to go.

Before you complain that the schools don’t give your child all they need….
Imagine if your child needed special schooling and 20+ hours of therapy per week and wasn’t able to get any of it

Before you complain that your child won’t eat their peas…
Imagine if there were only 4 specific foods that your child would eat(not necessarily because they’re picky) and nothing else.

Before you complain that your child is whining….
Imagine if you couldn’t understand what they were whining about.

Before you complain that your child is too emotional….
Imagine if your child didn’t show any emotion…not even happiness

Before you complain that your child is always catching colds….
Imagine if your child has been to the ER so many times you can even guesstimate how many…you’re on a first name basis with the nurses…you have no clue how many times you’ve answered the exact same questions, sometimes to the same person

Before you complain that you don’t get enough alone time or enough breaks…..
Imagine all of the above….and even less alone time and less breaks because there are only a couple people that can handle your child or know enough about your child to make you feel confident leaving them

Before you complain….
Imagine what other some parents deal with on a daily basis…and never complain or ask for anything for themselves. All they do is pray that their child will get the help they need…and that others might be a little more sensitive.

Wrote by Nikki Hazzard Bumgardner

Links – Will open in another page (if it behaves!)

Autism Storms and Rainbows UK – http://www.facebook.com/pages/Autism-Storms-and-Rainbows/152663228214371

Direct link to the post – http://www.facebook.com/permalink.php?story_fbid=260237034123656&id=152663228214371

#MerryChristmas! – #Autism

Published December 13, 2012 by mandzmagee

Christmas and Autism means a whole mixed bag of emotions and feelings for our family that most others take for granted.

While most readers of this blog are busy spending December decorating their houses with beautiful decorations, we have to keep them minimal as this causes Theo to get anxious and highly strung. Where most people are taking their children to see Santa, we’re trying to teach Theo that this jolly happy person isn’t someone that is supposed to terrify him. While other people are taking their children to deliver presents and cards to friends and family we’re trying to get Theo to accept a change to his normal routine to be able to do this. While other people are taking their children to Christmas parties we’re trying to get him settled because he’s came into contact with too many people that have given him a sensory overload. While other people are putting Christmas presents below the tree and watching their children getting really excited to see them grow in piles and guessing what’s underneath the wrapping we’re locking the presents away because anything with wrapping paper around it makes Theo nervous because he doesn’t understand that it’s something that’s to be saved for a specific day and he can’t have it til then!

Theo absolutely loves Christmas Day however, Christmas day to us is like most other families, getting up at silly o’clock to see the kids opening their presents however that’s probably where the similarities end to most families,

Theo tears through his paper, carefully making sure that every scrap goes into the rubbish bag, neatly organising his new things into their specific piles, clothes in one pile, toys into a box, books in a colour specific order, money into the money jar and so on … If one of his brothers are making a mess he’ll stop opening his presents to make sure that their mess is tidied up then return to his when he’s satisfied.

At dinner time we’re at his Grandma Julies, with many other members of the family, which in hand makes him anxious and will melt down until he can start eating dinner, he’ll do things that he knows that he’s not allowed to do, keep pulling at either his Dad’s face or my face to get our attention focused onto him again. When dinner is served he’ll settle again and we’re sorted out, as long as there is nothing green on his plate! After dinner we’re back to the Mum and Dad attention seeking until the buffet is put out for when the rest of the family arrive. When he’s eating again he’s all happy, however Theo has no understanding of what feeling full or being hungry is, so he’d pretty much eat until he is sick.

When we return home he wants straight to bed, the day has been far too much for him and he just wants to be in a dark room with his familiar surroundings.

On Boxing Day he takes a bit more interest in his new things, he’ll take them into his room and self adapt to them being there, if there’s anything that he doesn’t like he will not accept it being in his room until he’s gotten used to the item. We spend the day encouraging him to interact with his new toys, sometimes he’ll cooperate! Mostly he wont however because they’re a change in his routine.

Autism makes our Christmas a very interesting time! I wouldn’t change it for the world tho!!

#Autism – Guilt, Recognition and Acceptance!

Published October 7, 2012 by mandzmagee

I recently joined up to a UK based website about parenting which I am really enjoying being a member of, http://www.wrigglyrascals.com.  It’s mostly geared up to pregnant and new parents however I found myself wanting to join up to share my experiences, thoughts and advice with other parents and parents to be.  Don’t get me wrong, I’m not in the slightest claiming to be an expert at anything, some of the pages are very thought provoking and I’ve found I can share my experiences on the site to try and help other people.  I found a couple of active questions about children with developmental issues which inspired me to write about this.  Have a look at the site and if you feel you can contribute to it do so!!

Before Theo was diagnosed it was very very clear that something wasn’t right.  He was late at hitting all of his developmental stages that a “Normal” baby and toddler should be hitting.  As he was growing up he developed what other people seen as unnatural obsessions and when people were passing comments I started getting very concerned and went to the GP to raise both other peoples concerns and my own.

We got Theo’s diagnosis at the age of 2 and a half, we were very lucky to have got his diagnosis so quickly, I know many a family that have struggled for years to achieve a “label”.  The fact of the matter is however – without the “label” there’s no support and nothing for you to research to try and help your child!

I found myself being isolated because of Theo’s behaviour, family, friends and onlookers comments, facial expressions and body language made me want to hide him away from all these people who were judging both his behaviour and my parenting skills.

I questioned everything I’d done for my son, had I caused him to be like this?  Was there something I’d done/ate/said during his pregnancy that had impacted on this little being that I hadn’t realised at the time? The guilt I put myself through thinking that I’d caused this was unreal, then came his diagnosis and I invested all my (rather limited) spare time into researching what Autism was.

You have no idea how that little label “Classic Childhood Autism” gave such a sense of relief the more I researched it.  My first hurdle out of the way and conquered!  It wasn’t my fault, according to statistics I’d found autism effected 1/88 people – so why weren’t people more informed about it?  Why was there so many other parents and carers going through the same guilt process as I was?

I joined forum after forum online and spoke to so many other families that had been through similar and it was such a relief to know I wasn’t the only one to have gone through it.

I still found myself protecting both Theo, Ali and myself away from other peoples judgements.  I knew in my head that nothing had been caused by myself, I knew that Theo wasn’t badly behaved but I also knew that other people didn’t see what we were now aware of.  I also wasn’t as confident or out spoken at the time to correct other peoples judgement.  We went walks on paths that Theo wouldn’t come into contact with people who would look at him strangely, where they couldn’t sit and mumble to their friends about how spoilt he was to be throwing a tantrum like that to get his own way.  How he only self harmed to get his own way.

My turning point was a time (post diagnosis) where family and friends had took the boys and I to a local (supposedly) family orientated fast food chain – an alien situation to Theo because I didn’t risk him facing the criticism of others  – where naturally it was out of routine so he thought he’d voice his dislike and discomfort.  Theo was nonverbal so it wasn’t in words – by jeebus that boy could (and still can) scream!  After placing our order and requesting a drink for Theo asap to stop his screaming (sucking was a calming technique) the manageress came over and told us that if we couldn’t stop “The child wailing” we would have to leave the premises.  All of a sudden I found my voice and well she was given the whole “what gives you the right to discriminate against a child with a disability, couldn’t you have asked to help and got the drink we’d already requested to calm him with instead of trying to make us feel uncomfortable and unwelcome?  Within a week I had the company’s area manager in a meeting with me about discrimination towards disability and found myself insisting on discrimination training along with customer services with feedback from the facilitator so that I knew that it’d actually took place (which surprisingly I received!).

I’ve never looked back!

Being in the local Tesco’s getting things for tea and Theo having a melt down at the till (Theo was still self harming at this point), the older lady in the queue behind me snidely passed comments loudly to the lady that was with her drawing attention to everyone around us – again I couldn’t help myself “My dear you do realise that your discriminating against a child who is disabled?  He’s Autistic you see, he doesn’t have social skills or an understanding that this behaviour is frowned upon by people that are supposed to set an example to the younger generations that respect is a two way thing.  I would like to thank you for your comments given in a horrifying tone to a 5 year old also the animated faces that go along with that disgust which will probably horrify him for days to come.  He may have disrupted your perfect little life for a couple of minutes in the supermarket however you’ve disrupted his daily life through your actions probably for the next week or so.  Thanks again!”.  Applaud was given by the onlookers and they all passed judgement towards the cantankerous busybody that didn’t know what to say in reply.

Now a days however I have to say – I’m a lot more reserved.  When I see people looking at Theo in disgust or talking to someone about what they’re witnessing, I simply point out how he’s got a hidden disability and how they should educated themselves about Autism.  “Just Google autism and you’ll see” is a favourite line.

I no longer feel isolated, I no longer shy Theo away from situations, I strongly believe that knowledge is power and I use my power to inform people and spread Autism Awareness (without biting peoples heads off n spitting them back!).

#Autism – A few sensory things I’ve found that help

Published October 5, 2012 by mandzmagee

Theo’s Autism is an every day roller coaster, the slightest little things that knock him out of routine can have a massive and I mean MASSIVE impact on his day.  So I thought I’d post up a few things that I’ve found that have helped over the years that help him come down out of his melt downs!!

IKEA Swivel chair

http://www.ikea.com/gb/en/catalog/products/40100253/

Theo loved spinning to self soothe – there was only one problem – he hated people watching.  Even if we were in the room to help him, This chair was fantastic because he could hide himself away in his own little space where he couldn’t see people watching and if he was by his room on his own he was in a safe place to spin!  It was also good for if we had guests round and he didn’t want to face them, he could hide himself away with his books and just come out when he was prepared to face the world!  (Normally when he heard the biscuits being presented haha!).

Spacekraft Wiggle Cushion

http://www.spacekraft.co.uk/shops/sk/Product.aspx?cref=PD1682988&rguid=90fa870c-0f23-43d7-b7a3-d9128804e8e1

This was a massive thing for Theo, we could never get him to sit at a table to eat a meal, sit with us at story time, sit still on a train or a bus however this helped to partially solve the problem.  Theo could sit and fidget on this as much a s he liked and get the movement that he needed to help him stay calm.  He still uses one at school to this day!!

Spacekraft Wiggly Giggly Ball 

http://www.spacekraft.co.uk/shops/sk/Product.aspx?cref=PD1683059&rguid=e59f90c5-7358-470b-aa06-79f701b79659

This was the first way that we were able to get Theo to play with other children.  The ball has giggle tubes inside it where he was rewarded with a noise when he passed the ball to the other children, lots of happy giggles until the ball had to be put away!!

Asda Fit 4 Life Gym Ball  (We had another one from ebay however this is a good price and offer for more than one!)

http://direct.asda.com/Fit-4-Life-Gym-Ball/000934084,default,pd.html

Squashing, bouncing, throwing, kicking you name it we’ve done it for a multitude of reasons that have either been part of meltdown recovery or just plain and simple good fun!!  Theo loved this and I have to say – the squashing was always fun to hear the screams and giggles from him!!

Tumble Dryer Balls (You can also buy them in The Pound Shop)

http://www.tesco.com/direct/jml-dryer-balls-purple/212-7496.prd

Theo used to use these to self soothe by running them up and down his arms, he absolutely loved the feeling of it – I had to hide the ones I’d bought for the actual dryer!

This is just a round up of a few things that I could think of off the top of my head – If you’s have anything else that you might think that would benefit other people post it up with a link to the site where you can get them and we’ll see if we can put together good idea’s that may even help with stocking fillers for Xmas!!

Thanks again for reading!!  Xx

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