I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Someone’s having a birthday!!!!

This is me on my 2nd birthday. Gotta love the 70s'!
The cute blondie on the right is my BFF *H who incidentally is STILL my best friend to this day

Yesterday my blog turned 2!

Hip Hooray!

My very first post was over on my original blog “Welcome to the Madhouse” which I later merged in to Wonderfully Wired as I felt the name change was more appropriate.  (Though there are many days that I seriously still wonder about that!)

Since then I have written just shy of 900 posts, had 11,805 comments and have had 72,679 page views.

WOW!

In that time I have shared my highs, low and everything in between online.

Some would say (and have said) that putting myself and my family ‘out there’  is a huge risk to take, but for me – I have nothing to hide so why should I?

I am the same in person that I am online and have never felt the desire to create an online personality for the sake of being ‘liked’. This is me, warts and all.

I am often outspoken and too opinionated for my own good. I get worked up easily when I am passionate about something and tend to shoot from the mouth (or fingers in this case) without knowing all the facts, and often hindsight comes up and bites me in the butt.

But I have good intentions.

I seem to have a faulty connection between my brain and mouth and forget to put the filter firmly in place before going into battle.

For me – blogging is all about creating awareness one person at a time.

I am no-one special, I am not expecting to be a world changer but I don’t want to sit back and whine about no-one understanding our life or how autism looks in my family and do nothing to remedy that.

I vowed to my boys that I would do everything in my power to teach people about autism so that they can grow up around people who have a much broader understanding of how the world looks to them.

I made the choice to not allow their diagnoses to sink me but instead used them as a springboard for catapulting me into action.

And in the process, I’ve learned a very sobering fact: That not everyone out there will understand my motives or intentions.

Not everyone will agree with my opinions and not everyone will like me.

And that’s been tough for me to have to come to grips with because I never knowingly set out to offend anyone but as it is – we are all different and we all see things in our own unique ways.

And with that said – I sincerely thank all of you who have stayed on this journey with the Wonderfully Wired family and keep the encouraging comments coming – I am spending the afternoon today catching up on replying to you all. I apologise for being so slack with this aspect of blogging but please know that I read each and every comment and cherish them all. Time truly is the culprit here. I don’t have a lot to spare and that which I do have tends to be taken up with something or another!

Good intentions remember! LOL

Have a beautiful weekend  – love yas all!

Executive functioning and visual aids.

Temple Grandin once said:

“I cannot hold one piece of information in my mind while I manipulate the next step in the sequence.”

Individuals with AS often lack the ability to use skills related to executive functioning like planning, sequencing and self-regulation.

>> Source <<

So, What is executive functioning and how does it affect those with autism? Well….in autistic individuals, it’s more of a “dysfunction” than anything else because it is something that many of them struggle with greatly.

Put simply: Executive Functioning is something that is instinctive in those with NT (neuro-typical) minds but needs to be taught and learned in children with autism.

It includes skills like planning, organisation, attention being held and the inability to see the big picture. People with an executive dysfunction tend to focus on the small or minor details and miss the rest.

As Temple Grandin said in the above quote –  She is unable to ‘plan ahead’ if she’s in the middle of a different task.

Can you see how many problems this can cause for my kids? Yep. A lot!

I often have to stop myself when I’m giving directions to them because I remember that I have given them too many instructions and that they are unable to take it all in and act on it.

Like – telling the kids to “tidy up their rooms”. That is waaaay too general and non-specific. So I have to break it down into little bite sized chunks and walk them through it step-by-step.

We are a big fan of using visuals in this house. We have them everywhere! On the fridge, above the basin, on the toilet wall, in the shower, over the bath, in the car and on their wardrobes reminding them to do the basic tasks like getting dressed. A simple picture of them getting dressed wouldn’t work, they need the sequence that the clothes need to go on.

And visuals are useless if you don’t teach your child how to use them effectively and have them teach you back so that you know that they fully understand the purpose of them.

As you can see in the above picture, all the tubs in our toy room have enlarged photographs on them of their exact contents. This makes it so much easier for the boys to tidy up. If they don’t know exactly where something goes they can look for it in the photo.

Below is a short video of Lucas and I today “tidying” up the toys and you can see how the technique has started to work but still needs a lot of work (on my part too).

Sure it’s a much longer drawn out process than if I tidied it myself, but it’s important to me that my kids learn these basic life skills so that they can take them with them into their adult lives.

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Oh , and I actually managed to post on my poor neglected ‘fun’ blog today as well. Just a silly poem about school holidays. You can read it by clicking >> HERE<<.

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Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing pre-cooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Creating awareness on my terms…

So…..what exactly is creating awareness all about?

Is it railroading people with your beliefs because you want numbers on your side?

Is it bombarding people with a lot of random facts pertaining to your cause in the hope that they retain at least one important snippet of information only to forget the rest once the awareness campaign ends?

Or is it explaining why the cause is important to you and how it directly affects day-to-day life for you and your family on a more personal level, so that people can see real life examples that stick in their minds forever more?

Well, I guess that it all depends on where you’re coming from and what your ultimate goal for creating awareness is.

Over the past few weeks, I have read many personal accounts for and against the “light it up blue” campaign for autism awareness that is running for the entire month of April and the opinions are greatly varied.

* There is the camp of parents of children on the autistic spectrum who are in favour of the campaign and all for getting the message out there so that children like mine benefit from more knowledge and acceptance being created (which is the camp I am from).

* Then there is the camp consisting of the adult autistic community (which is varied in it’s opinion, some are for it and some are against).

* And lastly: there is the third group made up of both parents of children and adults on the spectrum who don’t agree with the campaign for various reasons but is mainly based around the allegation that Autism Speaks (the body responsible for the blue campaign) is only interested in ‘curing’ autism and only supports medicinal ‘treatments’ because they are allegedly backed by Big Pharma).

I cannot comment on another person’s choice or belief and I really don’t care to go into the semantics and politics of it all because I feel that they are irrelevant to me because I’m not trying to raise money or fund an organisation, I’m just trying to make a safer world for my kids. As far as I’m concerned: ANY effort to raise awareness and create more acceptance for kids like mine is wonderful regardless of the origins of the campaign and if I keep my focus in the right areas then I can hardly go wrong.

So with that said: let me explain where I am coming from and OUR story and why flying the autism flag is important to US.

~~~

Firstly though, I will say that wearing blue, pinning on a blue ribbon or replacing your front porch bulb with a blue one are not effective tools for raising awareness if they’re done alone. I’m all for it and we do all of those things here, but they need to be combined with a willingness to answer questions, offer up information and a passion to explain why the cause is so important to you and what you hope to achieve by being on your soapbox.

I completely understand that some people have chosen for whatever reason to not tell their child or their other children, close friends & family that their child has autism and it’s not my place to challenge anyone on their decisions, but for us: everybody that we know well is aware that we have 2 boys on the autistic spectrum so creating awareness is just that little bit easier.

(Plus – I write a blog about our life with autism – so for me to object to people knowing about us would be ridiculous right? ) Right.

I’ve been writing this blog for almost 2 years now and in that time – my wonderfully wired email address regularly fills with emails from readers who have admitted that they now give the benefit of the doubt when they see a child misbehaving out in public without instantly assuming that it’s due to lazy or non-existent parenting. They tell me that they have changed their views because they have read and realised that things aren’t always as they first appear. Sadly – most of those commenters haven’t publicly published their comment for fear of backlash and that saddens me – I don’t want my blog to be a hostile environment where it is ‘us’ versus ‘them’.

**(I welcome ALL comments whether you live with autism or not And I will ALWAYS moderate a comment that attacks one of my readers….I promise. Everyone is entitled to their own opinion but I won’t tolerate personal attacks).

A lot of the misjudgment of autism can be traced back to the 1940′s when Dr Leo Kanner coined the term “refrigerator mother”  to describe a parent whose cold, uncaring style traumatized her child  so much that the child then retreated into autism.

And you may think that society has changed a lot since then and that there is so much more knowledge out there that this type of belief is no longer existent, but sadly – this kind of thing is still occurring today on a regular basis. Pick up any newspaper or google autism in news websites and you are sure to see stories of abuse, mistreatment and misunderstanding for autistic individuals. It’s horrible.

Autism is still greatly misunderstood. Most people’s knowledge of autism is limited to Temple Grandin, or Rainman. (Incidentally the character Dustin Hoffman portrayed was Kim Peake who actually wasn’t officially autistic , he was a savant, but I digress)…

The autistic spectrum is HUGE and no 2 individuals will ever-present in the same way. There is no one-size-fits-all description for autistic individuals and for me – THAT is an important message to get out there.

Some children seem mildly affected and some severely….Some children are non-verbal and some are hyper verbal.

Some of our kids are sensory seekers and have to climb, jump and run everywhere, they love and crave squishy hugs and body contact and some are sensory avoiders who cannot handle crowds, loud noises, a lot of action or being touched at all.

To the average Joe – you cannot tell that either of my boys have autism by simply looking at them because mine are both on the high functioning end of the spectrum. They look like everyone else but when you know what you’re looking for – it’s as obvious as daylight.

They may look typical but they are definitely not. They still need allowances made for them in the classroom, in the supermarket, in their own homes and in restaurants. Often times when  they appear to be misbehaving, they are trying to mold into what they world tells them they need to be in order to be accepted. My goal is to spread the word that autism comes in many shapes and sizes and that it is on the rise. The latest stats in America come out at 1 in every 88 children is diagnosed with an autistic spectrum disorder.

1 in 88. That.is.huge.

We can no longer sit back and allow this to be simply swept under the carpet. It needs to be addressed and awareness needs to be spread so that my kids, my friend’s kids  and the ones yet to be diagnosed can enter a world where different is NOT wrong and they are accepted for who they are. The adults on the spectrum need to be told NOT that they are crazy, attention seeking or fruit loops but given the respect that they deserve and the understanding that they long for.

My ultimate goal in creating awareness is to get the word out that autism cannot be put into a neat little box and labelled “Too Hard”. It should not be shrugged off as the latest trendy diagnosis and we need to stand up and be heard. These kids have amazing futures, they have emotions, hearts desires, passions and dreams just like the rest of us and differ only in their brain wiring. Autism is not a design fault.

See this child:

And this one:

THEY are why I am passionate about this.

And there are hundreds and thousands of other children out there wearing blue in April. Can you look into their eyes and tell me that they aren’t worth it?

I can’t. And I won’t.

April – autism awareness month. I’m not asking for monetary donations, I’m not asking for you to support any organisations, but I am asking you to look around and open your hearts and your minds and see the beauty that is autism and remember these faces in April and beyond.

That’s all I ask.

~~~

Look closely…It’s all in the eyes…

At first I really struggled to know where exactly to start this post, so late last night I sat down with a pen and paper and wrote out as many random words that came to mind in an attempt to try to figure out what was really bothering me.

I came up with: bewildered, annoyed, helpless, frightened, angry, exhausted and I kept coming back to the one word that crept up more often than the others: frustrated.

And I determined to try to find out why I kept coming back to that word.

I realised that when you’re a parent of a child on the autistic spectrum, you are thrown directly into the deep end and forced to assume the role of not only parent but also that of ‘interpreter’ and “translator’ and you take on this role often several times every single day whether you want it or not.

And most of the time I am totally ok with that, but then there are days that my inability to decipher and decode what my son’s actual crisis is about is when the words like exhaustion, angry, frightened and helpless start to creep in as well.

Last October I took the children home to visit my Mum in the school holidays, and while we were up there, we attended an 80th Birthday party for a close friend that Mum had helped organise. It was a great night and I think only a handful of people actually know what went on behind the scenes in our little world that night. I’m sure that most partygoers were blissfully unaware that my little boy was breaking his heart and clawing at himself in major distress only 2 rooms away from the festivities. Mum was helping in the kitchen and also unaware at first of the mayhem I was dealing with.

And that’s because I’ve become very skilled at removing my distressed child from the attention of onlookers in situations like that night before the brown stuff starts hitting the fans. It’s become my superpower

That night last year was triggered by one small remark that I had made offhandedly to Harley who I saw drinking his second can of soft drink. I casually said to him: “You’ll make yourself sick if you drink too much of that stuff”, and I walked over to greet someone else that had waved me over.

As I started chatting to this lady, I glanced over her shoulder and saw Harley’s face contort and his body stiffen and I knew I had to get him out of there immediately. I JUST knew. I excused myself and apologised quickly and ran the eight or so paces over to Harley and grabbed him under my arm calling out to Ella at the same time to keep on eye on Lucas. She nodded knowingly and grabbed his little hand and skipped outside with him towards the grassed area.

I love that girl.

Anyway….I got Harley outside through the fire exit and sat with him as he bent over the 2 foot brick wall flapping, screaming and crying his little eyes out. He was virtually non-verbal but I managed to figure out that the groans,grunts,screams and cries were to the tune of “You said I’m going to be sick….I don’t want to vomit, I don’t want to be sick, I’m so sorry, I’ll never drink lemonade ever again”

Oh yeah…..Did I mention that one of the traits of  individuals on the spectrum is EXTREME literalness? Well it is.

He had convinced himself that he was going to be physically sick and because he is a massive germ-o-phobe….this was totally unacceptable to him. He stresses if someone even SAYS the word vomit in his hearing so the thought that he might actually be sick himself, had done his head in. I sat there with him for what seemed like hours and I managed to get him to calm down (well, the screaming and crying stopped but the rocking and the nervous flapping hung around a lot longer) and I walked him back inside because he was begging to wash his hands.

As I waited for him outside the bathroom, I saw a friend who I grew up with and hadn’t seen for years, and we started chatting. He and his lovely wife have a beautiful daughter with PDD-NOS and I only had to say that Harley was “having a moment” for him to understand exactly.what.I.meant.

Shortly afterwards, Harley walked out of the bathroom and my friend (God bless him), took one look at my boy and gave me a hug saying: “Ok……You need to leave right now, I understand completely….it was great seeing you.”

I picked Harley up like a little infant and carried his limp sweaty body out to the car with Ella and Lucas following me. I placed Harley into the car seat but he clung to me like a baby koala refusing to let go.(This child is 8 mind you). I couldn’t stand there holding him with my back bent on that angle so I lifted him out and sat with him in the gutter. And there we sat for another half an hour rocking and the tears stopped wetting my shoulder and he eventually released his grip on me and we were able to all get into the car and drive home.

My mum told me later that my friend had said that when he looked into Harley’s eyes, it spoke volumes and that everything made total sense to him at that moment.

I’ve learned long ago that parties and Harley just don’t mix. THIS is why we regretfully decline a lot of invitations (and probably why they’ve stopped coming in anymore).

And it’s important to mention that it wasn’t just the literal comment  of mine that sent Harley spiralling downwards that night, that comment was only the trigger. I had already noticed anxiety rising in him earlier on due to the crowds, loud noises and unfamiliar surroundings. He had his headphones on but the noise wasn’t the only thing bothering him.

Look closely. Those eyes tell a lot. They are saying: "I'm nervous but I know Daddy will protect me"

Which all leads to me yesterday.

Yesterday was the Easter hat parade at my children’s school. Just those words induce horror in a lot of ASD parents and it was no different for me. When I arrived, the kids were all seated in their classes in the quadrangle with the parents and visitors all sitting and standing in a large circle around them. There were a LOT of people there and each class danced around in a circle to very loud and lively music one by one.

Harley’s class got up and from 20 metres away I saw his eyes and said to my friend: “Uh-Oh, he’s gonna blow”. I just knew. It was written all over him and though he may have looked shy or reserved or even nervous to the average Joe….I knew exactly what I was looking at. I’ve seen it many times before, it was unmistakable.

So how did I know?

I have been asked many times how I “know” when he’s about to topple over the edge from coping to a soggy mess and until yesterday I was unable to actually pinpoint exactly how I know. The answer is in the eyes. As my friend pointed out at the party, it was in the eyes. Yes, the eyes tell a LOT. It’s ALL in the eyes.

These eyes say "I'm safe and happy".

As soon as the parade was over I took Harley by the hand and walked him over to his teacher.  He stood beside me silently head butting me and yanking at my hand and I asked her to look closely at his face and body language and explained that THIS is what the lead up to a huge explosive meltdown looks like. I asked that if she ever sees this face….it would be advisable to help him escape to a quiet place as quickly as possible. I explained that it’s when his sensory system is about to blow and that it’s something that you preferably need to get to in the early stages but if not – you need to deal with it ASAP.

I walked him into the quiet vacated classroom and he sat in the corner crying, rocking and shaking. His eyes were filled with pain, with fear and they were pleading for me to fix it all for him. To make it all go away and to help him to soothe himself because he knew he was past the point of no return. He didn’t speak a word but his eyes told me all I needed to know. The rest of the day was a complete write off and ended badly with the effects on the rest of the family carrying over well into the night.  I put on my brave face and acted all nonchalant because I’ve gotten that down to a fine art now But yesterday was hell in many ways. Hours and hours of inconsolable crying and screaming will do horrible things to most people, and I for one, cried long into the night.

And this is where the word frustrated comes in.

Everyone assumes that as his mother that I always have the solution. That I can come along and save the day and that because I can read him that I can make it all better, but this is not always the case. And most of the time I wing it all anyway because what may work one time isn’t guaranteed to work the next. It’s frustrating to be able to predict most meltdowns yet not know how to deal with them.

I was so frustrated as I watched other families laughing, talking and enjoying their picnic lunches with each other, while I had to go and fetch the head of junior school to retrieve my son who had locked himself in the boys toilets crying and screaming only to run out and escape and be untraceable for the next half  hour.

I was so frustrating to have to make my youngest child miss out on his first ever book parade after activities and it was equally as frustrating to have to go over to middle school and ask my 12 year-old daughter to leave her friends and sacrifice her lunch hour to help me by watching one of her little brothers while I searched for my absconder and do massive damage control when I finally found him.

It was even more frustrating for me to see other children on the spectrum sitting quietly with their parents eating their lunch while I bravely held back the tears yet again. I wondered what they had all done that I had forgotten to do?

Why were their kids coping and mine wasn’t? What did I miss?

How come no-one else’s child lost it on such a grand scale?

I finally convinced myself that these other parents must do what I do and whip them outta sight at the first inkling of an explosion too because any other answer would have been far too tough for me to bear.

So yeah….. Frustration is the word of this week.

But next week I’m aiming for fantastic
What are you all aiming for?

On Friendship And Laughter….

Many of you know that I have been extremely guarded with friendships over the past few years and I have put somewhat of a wall up around me as protection.

Part of the reason that I built this metaphorical wall can be traced back to the early days of Harley’s diagnosis. And I added a few bricks to it after Lucas received his because I didn’t want to let anyone in because I felt that I couldn’t relate to parents of typically wired kids.

I felt like an outsider.

I believed that I had nothing in common with any of them and that I would no longer be accepted by them because my kids were different. I imagined that I was being unfairly judged as a parent all the time and  I wrongly assumed that I had been also been tagged somehow once the boys were diagnosed. I honestly thought that my days of having a “normal” conversation with other parents were over for good.

It’s important to note that this was just my perception. No-one actually said any of that to me. My low self image probably contributed to it a lot more that I care to admit!

Lately, I have taken some time to sit down and reflect and have wondered why a person like me who seems to be hurt by words so much more than the average bear would dive into something as subjective as blogging in a public forum?

It doesn’t seem to make a lot of sense does it?

But somehow I have gained inner strength and peace through pouring it all out in print.  God has been able to use my writing as a therapy tool to show me His love and acceptance of me and to help teach me areas where I need to improve. I have had my eyes opened to things that I had formed a shield against.

Like friendships with parents of “normal” kids.

Recently, I have made a wonderful new friend who totally “gets” my strange sense of humour and has one that’s just as strange herself!  We have spent literally hours laughing till we almost cried about the silliest things and we just seemed to “click” from the get go.

You know how sometimes when you meet someone new and you know that you’re just MEANT to be friends? It just works and you can’t explain it. 

Well, we have found that we have a lot in common even though both of her children are 100% neuro-typical! 

Most of our conversations are over coffee (of course) and  seem to revolve around the crazy stuff our kids have done and she has blessed me in ways that she probably doesn’t realise just by being herself.

Naturally, many of the conversations we have had  have come back to autism and how it affects our family life, but not once has she rolled her eyes, glazed over or looked bored with the topic. She asks intelligent questions, she offers up ideas and has never undermines anything that I’ve said by making light of it.

She doesn’t live it day to day like I do but she also doesn’t begrudge me getting things off my chest either. I do try hard not to monopolize the conversation and I’m starting to talk about it less and less as we discover other topics that are fun to explore!

Laughter really is so therapeutic.  I love nothing more than sitting and giggling and smiling until my cheeks and stomach literally ache. My wall is gradually being chipped into. And that’s a good thing right?

~~~

PROVERBS 17:22 
A merry heart doeth good like a medicine!