Diagnosis

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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

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Toilet Training A Toddler With Development Delays

Published October 19, 2012 by mandzmagee

My guest post for http://www.wrigglyrascals.com

I’d already been through the whole toilet training process with Theo’s older brother Alisdair four years before hand, which had been an experience to say the least! This time round I was absolutely terrified of toilet training as I’d only had Theo diagnosed with Classic Childhood Autism when he was two and a half. I was still coming to terms with the ins and outs of the disorder and we were at least nine months to a year behind all the other toddlers at the Baby and Toddler Group that we went too.

Theo really wasn’t into social settings, to be honest neither was I with the Baby and Toddler Group. I was so jealous of all of these mothers bragging about how well their children were developing, the words they were beginning to put together but most of all how they’d managed to go several days without any accidents at night. The more I listened to them week after week the more the realisation was setting in with me that with Theo’s delayed progress he was yet again going to have his Autism completely standing out to other people and singling him out for people to be talking about him being so different.

To continue reading  http://www.wrigglyrascals.com/blog/2012/10/toilet-training-a-toddler-with-developmental-delays/

When you have read why don’t you take a couple of minutes to see if you can offer advice to help this Mum?  http://tiny.cc/wriggly149c

About Wriggly Rascals

Wriggly Rascals was set up by Shona Motherwell, a frustrated mum of twins Mhairi and Archie to get mums together to share pregnancy, baby and toddler advice via quick surveys to get the facts about what other mums do. Our mums pass on loads of great tips to mums who have asked for help. If you would like some advice, get in touch at http://www.wrigglyrascals.com

#AutismParents stand #United in #AwarenessRaising

Published October 8, 2012 by mandzmagee

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I have to say the feedback that I’ve received has been amazing from the couple of blogs that I’ve done so far on Autism.  It’s really surprised me the fact that so many people have been retweeting my blog and giving me such great comments back!!

Over the past few days I’ve found that there is still far too many parents and carers that have ASD as part of their daily lives still feeling as if they’ve isolated and alone, not knowing which way to turn for support and advice no matter if it’s pre or post diagnosis.

Tonight there was one thing that I realised after speaking to a number of folk – On the off chance that they happen to fall across my blog – I may be able to make a difference!!

One of the best places to turn to for to get this support and information is at your fingertips right now!  There are many fantastic online communities, dedicated sites, users of social communication sites that are here to help, advise and most of all support you.  The best thing about it is – you can sit comfortably at home after a really stressful day and not worry about people seeing you!

To the people who are already regular readers of my blog and ASD connected – If you’d like to share anything please feel free, let me know if you don’t mind me reblogging your posts or sharing a community you’re involved with – at the end of the day, as you’ll know your self we’re forever picking up useful bits and bobs that are worth while trying just through speaking to other parents and carers.

If you happen to have just stumbled across my blog and have experiences to share, sites or online communities or information pages please do post up and get involved.  I’d love people to be posting up more to share with people who are new and unsure of ASD.

Now for the folks that really matter, if you’re new to ASD, unsure of where to go and what to do, needing to ask questions about anything – REMEMBER there’s no such thing as a silly question!  If you’re just needing to share your experience and seek advice or hints and tips to try – You’re more than welcome to post up on here and I’ll do my best to get you an answer.

Autism Parents Stand United In Autism Awareness!

#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!).

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