The littlest mechanic

Yesterday morning was an absolute shocker. We were about to leave for school – but when we went out to the car, I noticed that the battery in my car was dead. So I had no choice but to clutch start it by rolling backwards down the driveway much to the delight of two excited little boys in my backseat.

I really hope he was as oblivious as he seemed

After we’d pulled up to the school and gotten out of the car, we were walking in through the school’s main gate when Lucas spotted one of the kids from his grade and started to tell him all about our adventures in re-starting my car.  I smiled but not for very long as I watched the other boy’s eyes start to glaze over as Lucas went into the specifics of how the engine works. He had just started to explain to his friend about how he was unable to turn on the cabin lights because of the dead battery when I observed the little boy whisper something to his mate and they both started walking faster together – they were trying to get away from Lucas.It broke my heart to realise that Lucas hadn’t picked up on their non-verbal ‘we don’t want to hear your story’ clues and he kept on talking AT their quickly departing backs whilst quickening his own pace to keep up as though nothing had changed.  I comforted myself with the fact that if Lucas was unaware – it obviously wasn’t affecting him too much so tried to let it go. I kissed him goodbye and waved him off as I headed toward the middle school where I am currently doing work experience for two weeks.

But this story doesn’t end there.

This kind-hearted man made my day

Lucas was in his element

Fast forward to that afternoon and I knew that I’d have to call roadside assistance to either jump-start me or replace my car’s battery as there are no hills that I could use to clutch start it on at school. So we sat in the car for about half an hour playing eye-spy whilst waiting for the man to turn up.  And when he did, I quickly told him my problem and lifted my car’s bonnet for him to take a look. Meanwhile Lucas is hovering close by trying to get a look under at the engine and I held out my hand as if to say “stop, you can’t come over here” but what happened next really surprised me!

The gentleman who was looking at my car smiled at me and then motioned to Lucas and asked him if he wanted to help him fix Mummy’s car! Lucas beamed and nodded excitedly.

The man asked him to lift the lever that holds the bonnet up and then he asked him to help clip the leads onto the battery. Finally he asked Lucas to read out the numbers on the screen that he was holding and very patiently explained in detail what each number meant as he went along. He answered all  of Lucas’ questions properly not just with throw away answers and paid him the greatest amount of respect by engaging him and showing an interest.

Lucas smiled so widely – he was so thrilled to be allowed to help and I could tell that her felt super important right then! I was so thankful to this kind old gentleman. He has no idea what a difference he made not only to my little boy but also to me. It restored my faith in humanity after watching helplessly that very same morning as other children tried to give him the shake off.

And Lucas hasn’t forgotten it either – he woke up this morning and told me that he wants to fix cars when he gets older. And if that’s what he wants to do - he’ll be an amazing mechanic and I’ll support him all the way.

Thank you Mr Roadside Assistance, you’ve made this Mother smile and shown her that her little boy is gonna be just fine

An Impossible Situation

Sometimes parenting on the spectrum finds you in situations that are hard to navigate and it’s often impossible to figure out the best strategy for dealing with them when you are in the heat of the moment. Because these moments aren’t always black and white like regular parenting can be at times.

There have been times where I have had to make a choice of which child to comfort when some situations arise.  And that’s an incredible hard thing to have to do!

Like yesterday, we were all driving the 6 hours from my Mum’s house to ours and had stopped for lunch. I had taken the boys with me to the bathroom and was helping Lucas to wash his hands by turning on the tap for him, only I accidentally turned on the hot tap causing him to burn his hands. He let out an ear-piercing scream from the pain and Harley (who was standing next to him) reacted strongly to the sudden loud noise and thumped his little brother HARD on the back.

Lucas was still crying from the burn and now also from being hit and his screams got louder causing Harley to throw his hands over his ears to block the continued screaming.  But, Harley was now kicking Lucas because he was still screaming and it just went around and around in circles.

Lucas kept screaming – Harley kept kicking Lucas because he was screaming – Lucas screamed from being kicked. And repeat.

I was in an impossible situation because I needed to get cold water on Lucas’ hands to help ease the burn (who wouldn’t let me put his hands anywhere near the water because he didn’t want to get burnt again) and trying to calm him from being hit and kicked as well as trying to comfort a distraught Harley who was in full-blown meltdown.

I couldn’t do it and had to make a quick on-the-spot decision to deal with the most important issue; which was focussing on the burnt child. I then had to put myself physically between the boys to take the force of Harley’s kicking to shield Lucas all while trying to get him to stop crying, run the water over his hand and show Harley that I was there for him.

To add to this: at the moment I have a bad leg and knee from a running injury so I also had to ensure that he didn’t kick that leg during his meltdown. It was a challenge I can tell you!

Eventually Lucas’ cries turned into small whimpers and Harley started walking in circles on the spot looking at the floor. (This is part of how he calms himself) and I was able to gather a boy under each arm and hug them closely.

I tried my best to talk to them both about what had just happened but honestly: I didn’t believe that either of them was deliberately upsetting the other. So I asked Harley to apologise for hitting and kicking and I apologised to Lucas for turning on the wrong tap and causing him to scream and hurt Harley’s ears.

It’s been 24 hours now since this happened but I am still unsure if I have handled this properly.  Lucas’ hand is ok, the boys are best buddies again and it seems to be forgotten.

So why am I still upset over the whole episode?
Why is it still haunting me? Why can’t I just get on with it?

Because mothers are harder on themselves than anybody else is.

I’m interested to know if anyone else has any tips on how they might have handled this situation?

Any thoughts?

Just look at the ground Mum …

I will not enter a JB HiFi store if I can avoid it. It’s not a bad store, the staff I’ve encountered there have always been lovely and their prices and products are good. And it’s not just my local one that I won’t go into, it is every franchise. Anywhere.

This store kills me. But it’s not a superficial reason that makes me dislike it, it’s because this store does complete overkill on their in store advertising and point-of-sale. There are banners, pricing signs and posters hanging from every spare space of ceiling and covering every spare wall and surface that there is. I literally cannot cope with the bright yellows and excess of signage because it confuses and overloads me visually.

As long time readers would know – I have vision problems. I have had a corneal transplant in my left eye because I was born with a degenerative eye disorder. So this kind of in-your-face promotional onslaught actually hurts my eyes and gives me headaches. And this is because my eyes don’t work together but rather as individuals hence the reason that I have trouble knowing where to focus in places like this.

So I avoid them if possible.

Today we went down to the shopping centre to grab a few things and Harley pulled me by the hand leading me towards that very store. He wanted to go and look at the Skylanders in there and I shook my head and quickly explained why I couldn’t handle being in that store.

“Just look at the floor Mum” he said.

I turned around and looked at him asking him to repeat it.

“Look at the floor Mum. That’s what I do when you take me somewhere and it is too loud or there are too many people. If I look at the floor and count the tiles or floorboards, my brain focuses on that instead.”

I was amazed!

I asked him: “Is that why you are always walking into people and poles and stuff when we’re out?”

He nodded and smiled.
“Yeah, sorry about that Mum. I’m just looking after my brain”.

I LOVE that my boy has begun to develop ways to self-help and that he is starting to be able to verbalise them. I LOVE that he is finding a way to fit in this world. I love every little unique and quirky thing about him.

And hey…as far as I’m concerned, if counting tiles is what it takes for him to focus, count away my boy!

Judging books by their covers…

 Most of us know the phrase: ‘Don’t judge a book by its cover’ which basically means that there is a lot more to EVERYTHING than what you see on the surface.

And it’s certainly very true that its easy to jump to conclusions when we look at other people in our lives. Too often we form opinions based solely on appearance. And I too  have been guilty of this a number of times myself, but mostly – I come from a place where I believe that every single person has a story and that no one’s story is any less important than anyone else’s. But sadly – in today’s society, it is a view that isn’t held by many.

Because, like so many other hidden quirks, nuances and physical attributes, you can’t always tell if someone has a disability just by looking at them, especially when it is a disability such as high functioning autism.

I have lost count of the number of times that people have shown surprise upon finding out that my boys are on the autism spectrum. And I never quite know how to react to their surprise. Does their surprise indicate that to them – my child doesn’t look sick enough to be diagnosed with anything? Did they expect my boys to look more, I don’t know, handicapped? Or do they simply think that I have just jumped on the latest fad bandwagon whereby getting your child a trendy diagnosis is akin to acquiring the latest apple accessory?

Do people have an idea in their heads of what autism should look like? And do my boys fail to meet their expectations accurately? Were they expecting them to look more disabled? Would a wheelchair help to sell it?

I really don’t know the answer to any of that. But I have to say that every time that I find myself in a situation like this, I am torn.  A part of me feels that I somehow, on some warped level, need to defend their diagnoses and PROVE that they really do meet the diagnostic criteria despite the fact that they “look” completely “normal” at that given moment. I feel like I am under the spotlight as a mother and I want to blurt out all the challenging behaviours in an attempt to provide evidence that my child isn’t always this charming, well-behaved and loveable.  Because isn’t that what some people associate autism with? Misbehaving, out-of-control children who have no future? Why do I feel the need to feed that incorrect assumption? Why don’t I focus on the “good” parts of autism?  Because I want to be believed. That’s why.

I read that back to myself just now and I am disgusted.  Not because I feel bad for painting a true picture of how our lives sometimes are, but because I feel like I need to justify the good and very normal behaviour that my kids are displaying in order to prove that they truly do have a diagnosis of autism spectrum disorder.

Because any parent of a high functioning child on the spectrum will attest that the child you often see in public is often the complete opposite to what they live with. They also know how hard it is when your child appears “normal”. Because they want to celebrate their child’s success in “fitting in” but know that there will be a huge price to pay for it later. And it’s a price that no one else will have to experience.

But here’s where I need to provide one very big and important disclaimer: When we tell you the bad stuff, the challenging stuff and the stuff that puts an awkward feeling in the air – we are not trying to extract sympathy for ourselves or even for our children.

What we are saying is that society needs to sit up and pay attention because these regular looking but struggling children will one day grow into adults. And currently, there are adults in the autism community who are overlooked and ignored because society has this ill-conceived misconception that high-functioning autism is no big deal.  That because these people look like everybody else that they are just attention grabbing complainers using a diagnosis to explain away their weirdness or lack of social awareness.

Lately – I admit that I have lost the will to keep advocating for autism. Because it’s exhausting and I don’t have the time to explain it in depth to people who really aren’t that interested in learning about it anyway.

Although the passionate side of me really wants to spread awareness far and wide, the sensible part of me says that there is already enough awareness out there. But what there isn’t enough of is; compassion, understanding and a willingness to learn how to stop judging books by their covers.

Autism is no longer a word that is barely heard of. Almost everyone in the western world have heard the word. But how many of those people have actually taken the time to find out what autism actually is? Or how autism presents, or even how incredibly huge the spectrum is?

The book covers of autistic people may be bright, fancy and attractive to look at , or they may be plain, simplistic and understated. But until people take the time to read these books, understand these books and really read between the lines of what their messages are: They will never be appreciated for how wonderful and valuable they really are.

Once you take the time to read them, you will discover that each one is unique, fascinating, sometimes horrifying and tear inducing but also exciting, thrilling and suspenseful.

And aren’t they the ingredients of all the best sellers out there?

Never judge a book by its cover.

Never, never ever.

Stilettos and Joggers

I was telling a friend the title for tonight’s post and we laughed about it.

We were discussing the act of walking in another person’s shoes and the difficulty factor involved when there are kids with special needs as part of the package.

I said that if the shoes you were made to walk in on another person’s journey were your own worn-in comfortable joggers – the walk would a lot more pleasant than if you were to walk the same path wearing unfamiliar and un-sturdy stilettos that pinched your feet every time you took a step.

And we agreed that as Mum’s of SN kids, we were often not given the option of footwear and were expected to sprint in heels regularly. But we’re not allowed to complain because this is our lot in life right? Somehow on some level we deserved to have more difficult children, or we were given them because “God” gives his toughest challenges to his strongest warriors (or insert any other cliché that SN mothers have been told to alleviate the speaker’s own feelings of guilt).  But the thing is – none of us put our hands up for this. This is just the way it is.

Lately – I am frequently overwhelmed with feelings of inadequacy. I constantly worry if I am doing enough to help Harley. I think about his future and wonder if he will be able to navigate adulthood or whether it will send him into frequent shut downs or worse – public meltdowns. And if he does shut or melt-down regularly – will he be able to hold down a job? A relationship? Friendships?

Last week was the school Easter Hat parade. Harley had told me in the morning that he didn’t want to go but I had a busy morning ahead of me so I made him go anyway. I turned up a few hours later to watch the parade and noticed during the event that Harley was dangerously close to losing it. As soon as it finished I went over to grab him to take him home early but knew by the look on his face that I was too late.

His class was the last one to walk around and he was on complete overload by the end. I walked him out of the auditorium and over towards his classroom when he turned to me and punched me in the stomach, he followed that up with a few kicks to my shins and some head butts for good measure. He was sobbing and moaning and clearly needed a safe place and I would have thrown him in the car if I could have found Lucas, but he had run off somewhere else and was somewhere amongst the throng of other parents and students.

I let go of Harley’s hand to take a phone call. It was Ella calling from over the other side of the school in the middle school area. She had somehow grabbed Lucas and was calling me to ask me to come get him because he was lost and looking for me. But by the time I had hung up from the call – Harley had taken of at full speed.  I tried to follow him but he was too fast.

My phone rung a second time and it was Ella again telling me that she’d seen Harley run past her and she’d noticed that he was terrified and told me which direction he’d headed in.
I eventually found him cowering inside a tent inside one of the junior school classrooms. My joggers had become stilettos again and I turned and walked out of the classroom alone and burst into tears.

Somehow, someone had alerted the head of junior school and she had gone into talk to him. Once he came out again to me she asked him to apologise to me and I was floored?

In all these years, it has never occurred to me to ask him to say sorry for hurting me whilst in the midst of a meltdown.

I just told myself that it was part and parcel of having a child with special needs. I told myself that he wasn’t in control of his emotions so therefore he didn’t need to make amends. I usually just nurse my wounds and try to pretend that it didn’t really matter.

But she pointed out that whilst he may have been unable to control himself at that time, he still needed to say sorry to me once he was calm again. She asked me (rhetorically) how he would go in the workplace if he never apologised for his outbursts. (If they happened).

I knew she had a really great point and I wondered if I had been strapping on stilettos when I should have been able to stay in my joggers all along?

Have I made things harder for myself by “allowing” certain behaviours that I would never allow from a typical child all under the guise of “he can’t help it”. Have I permitted my child to push me into a corner by not requiring him to take ownership of his actions.

Yeah….I really think I have! And discovering this about myself has opened my eyes to a whole new way of parenting.  I’m really not doing Harley any favours by not teaching him acceptable behaviour and if I continue to make excuses for him when he hurts me – how will he ever learn to treat other people the way they deserve to be treated?

It’s a tough question but one that I have had to eventually ask myself. I’m tired of running in heels.

Now

I always wanted to be a mother for as long as I can remember. I have never been a particularly goal oriented person but having children was always right up the top of my to-do list. And I was blessed to have three healthy children which is far more than I deserve and I am thankful for this – every day of my life.

Really I am.

I don’t take this lightly – I know that there are a lot of women out there who go through years and years of heartache and loss and I will never understand why life deals crappy hands to some people. Life can really stink sometimes…it is unfair and it is harsh. Which makes me even more thankful for the blessings that I do have.

But towards the end of last year, I started to go through a kind of ‘shift’ in emotions. I found myself resenting the kids more and more and a number of times I told my husband that I wish we’d never had them in the first place. I tried to ‘speak to my soul’ and tell myself off for being so awful because I could hardly believe myself that I had allowed things to get that bad.

Of course I didn’t mean it but what I did mean was that I was losing who I was. I had forgotten what it was like to be “Fiona” and not just someone’s Mum or someone’s wife and I didn’t know how to get me back again.

I had decided last year that I would take the first year of Lucas’ schooling off before going back into the workforce and I can see now in hindsight that I wasted an entire 12 months. I achieved nothing except gaining weight, watching TV and browsing around shopping centres to kill time. No wonder I was miserable. But things are changing now in a really big way. I’ve taken the proverbial bull by the horns and thrown myself head first in to a number of new activities; boot camp, studying and even some part-time work. And I am once again looking after my mind and soul. I am taking care of ME.

As I mentioned, I have joined an outdoor fitness boot camp group that I’ve been going to three times a week and I’ve pushed myself harder than I ever thought possible. I’m so surprised at how much I really do love it and look forward to it. And whilst I still have a looooooong way to go to achieve my final fitness goal, at least I’m a helluva lot closer than I was last year! I have more energy, more motivation and a lot more self-esteem.

I’m eating better and sleeping more and just loving life at the moment.

I tried to exercise today, but my asthma let me down and I couldn’t breathe properly. There was a lot of smoke in the air and as soon as I tried to do the warm up exercises it became clear that I wasn’t going to be able to finish the session. So I decided to go for a slower walk for the hour instead and I took my friend’s new baby with me so she could do her workout in peace. And this beautiful baby boy taught me so much more than I ever thought possible.

As I walked, I watched him sleeping through the hood of the pram. He was so calm, so tiny and so helpless. He was safe and protected from the outside world and I thought about the fact that my friend had put so much trust in me. Her brand new son, her biggest treasure was in my hands and I wasn’t going to take that lightly at all. I felt honoured to be given such trust and I thought about how similar it is to how God takes cares of us. How He looks down on us and protects us from the world. How we were so helpless and insecure before we found Him. And because I know He is my shelter and my safeguard – I can also rest peacefully in Him. And that’s what I’ve been learning how to do.

While I walked I reminisced about my own little boy Harley – and remembered the many times that I used to walk around the block with him in his pram over and over again trying desperately to get him to stop screaming. I was always in tears myself as I walked. I would rock that damn pram for literally hours because my baby hated being held. He was so resistant to the outside world that it completely baffled and confused this once sanguine and outgoing mother. I sighed because I know that I barely even remember Harley as a baby. Sure I’ve got dozens of photos but my memory has blocked out a lot of his babyhood because it was just too painful. At the time, I thought I was the worst mother ever because he didn’t want me near him. I didn’t understand him and everything that I read about raising babies just made me feel worse because they were all written for parents of children who were developing typically.

But I didn’t know that I was dealing with autism. I had no clue that my boy’s sensory system was under constant assault from the environment around him. I didn’t know that taking his pram through a crowded shopping centre with bright lights, loud noises and crowds would do the reverse of calming him.

I just didn’t know.

But I do now.

I have learned how to show him love in a manner that HE understands. He has taught me how to navigate through the invisible barrier of communication and I now know when to leave him alone. I may not have had those moments of bliss where I got to gaze at my sleeping baby like I did today, but I have more than my share of those NOW.

And NOW is what I am going to continue to focus on because the past is only a reminder of how far I have come. The past is part of what has shaped who we are but it now serves as a reminder of just how far HE has come and of all the good times up ahead. I have fallen head-over-heels in love with my children all over again since I stopped to take care of me.

It was all about taking my eyes off what I don’t have and learning to be thankful for that which do have, because;

“Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom”.
Dr Tony Evans.

Psalm 61:22 From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.

Fi x

Consequences – choosing the right door.

Image from: image by freeimageslive.co.uk – photoeverywhere

I haven’t blogged much lately – it’s been busy here with me commencing studying and the kids going back to school and therapies etc.

This year – Ella is in her second year of high school in grade 8, Harley has gone into grade 4 and Lucas into grade 1. They have all settled in nicely as far as school goes but as is usually the way – home life hasn’t been anywhere near as smooth sailing.

Harley has rediscovered anger and aggression and Lucas has begun to push boundaries in a big way again. But by far our biggest issue at the moment is trying to teach them both about consequences. It continues to be an extremely exhausting uphill battle.

Neither of them (but particularly Harley) seem to be able to grasp the concept that what they say and do now will ultimately dictate whether or not they are praised or disciplined for their behaviour(s) in the near future. It’s frustrating and so far I haven’t seen a lot of progress. But I’m not giving up just yet!

I’ve been asking questions such as: “How do you teach a child who isn’t able to even name their own emotions (let alone realise that other people have feelings and desires)  that they need to factor all of that in when they are making decisions that may also affect others?”

And: “How do you correct them without making them feel like they have failed or broken some unspoken rule that they aren’t aware even exists?”  I don’t want to break their spirit and cause them to feel useless or stupid.

Well – I’m honestly not really sure because we’ve also been on a steep learning curve as we try to parent without having any idea what we’re actually doing. But the good news is that WE as parents are able to learn from past parenting failures and therefore use a different approach the NEXT time that a situation arises. Because WE’VE learned that what we were doing just wasn’t working. So we can no longer use the excuse that “they don’t get it” because the onus falls on US to become teachable instead. Especially if we hold any hopes of actually training our boys to be responsible and caring adults one day.

Admitting that we haven’t got it all together is paramount to achieving success in any aspect of parenting. Stepping down off the pedestal and continually looking for new and better ways to parent is the only way that we will ever find what works for us and our children.

*****

This week , I was driving along in the car with my Mum and Ella. I pulled up to a set of traffic lights and looked into the rear view and saw my beautiful teenaged girl sitting there quietly singing along to her iPod. When she noticed me, she smiled and gave me a cute little wave and I immediately got a flashback to her at 18 months old sitting in her car seat kicking her legs and laughing as we drove along. She was SUCH a delightful baby. When she came along,  our lifestyle barely changed, our social life continued and we only ever had to say “no” or “stop” to her and we would get immediate obedience and absolute compliance. She never pushed boundaries (and still doesn’t), she never threw tantrums and she always seemed to slot in effortlessly anywhere that we went.

But guess what? We parent our boys in the EXACT same way that we parented (and continue to parent) her.The house rules and behaviour requirements haven’t changed, the expectations are exactly the same and whilst she continues to be pleasant to live with – the boys are increasingly challenging and pushing us to the limits of our patience.

And this is why we KNOW that we aren’t necessarily crappy parents so much as we need to find a different but equally as effective method of teaching the boys. It’s not that we think Ella is a better child, it’s just that she learns in a more mainstream way than they do and she adjusts to and understands the unspoken rules of society much better than her brothers. We were never in a position where we had to research and trial other less conventional methods of parenting with her, the methods that ‘everybody else’ used worked for her. We didn’t realise how just fortunate we were.

And because we had her first – I can understand why parents of children like Ella wrongly assume that autism is no more than a badly behaved, badly parented and spoiled child. This was one of the factors that led me to starting this blog. I want to scream from the rooftops: IT’S NOT ALWAYS THE PARENT’S FAULT!!!!!

I digress……

*****

I truly believe that ANY child whether they have a special need or not can be taught anything. It’s just a matter of finding out what works for each child individually and not applying a one-size-fits-all approach to learning. I am all for it in the classroom and in social situations, I want my boys to be given opportunities to flourish and I regularly quote the phrase: ‘Fair isn’t every child getting the same thing but every child getting what they need’. But embarrassingly – It’s only been recently that I have started to apply this same approach to my parenting style and start to think outside the box to find a way that will work for US as a family.

I have read a LOT this past week on teaching consequences and the best piece of advice that I found was to go back to the tried and tested social story.

So guess what I’ll be doing this week? I’ve also decided to try to make the most of Harley’s visual brain and have settled on the idea of teaching the boys using a RED door for a bad consequence (STOP) and a GREEN one for good (GO). Because it will be much easier for them to visualise and recall which door that a particular past behaviour has led them to so that they can LEARN from their past experiences than for them to recall a whole bunch of confusing and meaningless words.

And once they’ve learned how to connect behaviours to the right or wrong doors – we will be well on our way to success. Wish me luck! I hope I’m onto something!

Once it’s completed I will post it here and on the Wonderfully Wired Facebook Page so stay tuned.

MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3^rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

• Attending the carnival for the first time.
• Catching a bus with lots of other children.
• Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

God bless her - she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

• He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
• He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
• He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching

The Spinning Question Mark

Last night as I was putting Harley to bed, he asked me if I would stay with him and talk for a bit because he wasn’t tired yet. So I lay down next to him and we started chatting about the day and what we had been doing. We played the butterflies and cockroaches game.

I asked him what his “butterfly” was (his favourite part of the day) and he told me that it was playing the Wii (no surprises there). Then I asked him about his cockroach (not so good thing that happened that day) and he told me that it was the shopping centre that we went to that morning to have a coffee together as a family. It was too noisy and smelly apparently.

And then he started giggling so I asked him what he found so amusing. He looked at me and said: “Mum, every time we play the butterflies and cockroaches game I have to try not to laugh”

“Oh” I said surprised. “Whys that?”

“Because one of the butterflies that I can see flying around my head always bumps into the other butterflies. And it’s funny.”

I was surprised but really curious to learn more so I asked him; “Do you see a cockroach in your head too?”

He nodded and said: “Yep, he is really tall and has a walking stick and sits down next to me. He is really grumpy and shouts at the butterflies.”

We laughed together and I decided to explore further because I was fascinated to learn that my boy – like so many other individuals on the autistic spectrum – can truly see in pictures!

I asked him if he gets a picture in his head if I say the word ‘car’ and he nodded. So then I asked him if it was Mummy or Daddy’s car that he pictured and was astounded by his response. “It’s not anyone’s car Mum. It’s a car that my brain made up. It’s blue and white. It’s the same picture I see for the word ‘car’ every time.”

So I thought I’d take it further.

“Harley, what do you see if I say the word ‘Volkswagen’? Do you see that same car again?”

“No”. He said. “I see an empty box with a big question mark over it spinning around and around because I don’t know what a Volkswagen is”.

Wow. I knew I was onto something so I dug deeper and asked him: “Do you see a spinning question mark a lot?” 

He nodded. “Yes, every time someone says I word that I’ve never heard before. It is what I see when I don’t understand what the other person is talking about. I hate it when I see that question mark. I feel stupid and that’s why I sometimes get angry”.

I was even more amazed by now! I tried again: “Harley, when I say the word ‘kitchen’ do you see our kitchen or someone else’s?” I asked.

“I just see a big white area with a sink and a lady flipping pancakes on the stove”. He said. “I don’t know who the lady is so I call her kitchen lady”.

“What about if I say ‘dog’. Do you see the same dog every time?” He nodded. “What kind of dog do you see?” I asked him.

“A Chihuahua. Because they are small and don’t frighten me” He explained.

I also learned that when he hears the word ‘pool’ he sees a big empty blue hole in the ground with a person standing in it. There is never any water in it because the word ‘swimming’ pool has water but ‘pool’ doesn’t! And then he told me that when he is in the school playground, he sees pictures on lots of different TV screens.

“Sometimes when I’m playing with *Ben, I see myself on a big screen and I’m standing behind myself watching what I do. And because there are lots of other kids around too, I see them all on smaller screens. But they have all got the sound turned up too high and are all on different channels to each other. I can’t understand what any of them are saying and they all try to be louder than each other and I can’t work out how to turn any of them off so I have to run away.”

By now my mouth was almost hanging open! This was a massive revelation to me!

“And”. He continued “At church time at school, it’s like there is one screen for me with a question mark spinning around inside it and everyone else’s screen doesn’t.  If it is too loud or too confusing for me, I see myself inside my box hugging my teddy and he listens to all the noise for me so I don’t have to.”

I had been dying to ask him about how his brain goes when people talk to him really quickly. I know from experience that he doesn’t cope with information overload so I was curious to find out if he had developed a technique to overcome this.

“So Harley” I started. “When Mummy or somebody else talks to you and uses a LOT of words, what do you see in your head then?”

He sighed. “Well, when they first start talking, my brain shows me pictures of what they are saying and then before I can join the picture together to understand the sentence, they have already started a new one. It’s so frustrating so now I only answer the bits that I hear and understand.”

He followed with: “You are good at this now Mum, you know that I can’t do that and you wait for me”. (I think he meant  that I wait for him to “process” before speaking more). And yes, I do!

I smiled down at him and he reached up and gave me a butterfly kiss on my cheek with his eyelashes. He then giggled and said: “Mummy, that butterfly won’t get lost and bump into other butterflies. It is in my eye so I’ll always know where to find it. “

He looked back at me and stated:  “I love you Mum, I’m tired now so please go away now”.

Amused at his ability to be brutally blunt but charming at the same time I smiled and pulled the blankets up on him, kissed his forehead and ran to get a pen and paper so that I didn’t forget any of this.

My kid – like ALL kids and adults with autism – has a truly remarkable brain. He is definitely teaching me more than I could EVER hope to teach him. He is wonderfully wired and I wouldn’t want him any other way.

Ten ways to spot autism in a crowd.

Children on the spectrum often like things that are repetitive like spinning tops.

I am often asked the question: “What does autism look like” or “How can I tell if a child has autism” and the simple answer to those questions is “You can’t”. Because autism doesn’t have a particular ‘look’ but is detected by observing behaviours NOT appearance.

Autism is often referred to as the silent disability because there is no wheelchair or defining facial features to help identify it at first glance.

But if you know what you’re looking for – its not as difficult to recognise as you might think. It’s important to me to share this because the more that society is taught about differences – the greater the acceptance and tolerance levels toward children and adults on the spectrum for the future generations. So I are condensed a lot of information here into ten short points that may indicate an autism spectrum disorder.

The first rule of thumb in possibly identifying autism is;

ALWAYS GIVE THE BENEFIT OF THE DOUBT.

Whenever you see a child who appears to be odd or quirky or if their behaviour is not quite right-even if you can’t put your finger on the possible reason or see any other indicators of a disability, assume that there is more to the situation than meets the eye.

For example: If you see an older child having a tantrum in public then it’s usually safe to assume that there is something else going on here. Generally, kids are too embarrassed to pitch a full blown tantrum past the ages of 5 because they have enough self-awareness to know that people will stare at them. But not in the autistic child because often they are simply unable to contain their emotional and sensory overload and it is no longer a matter of choosing whether or not to hold it in.

That’s not to say that older children don’t have tantrums, but in an older child, a tantrum in public is usually much more subtle. These tantrums are designed to get their own way without attracting attention to themselves. Like kicking a shop display, or mumbling insults under their breath or sulking and refusing to do what they’re told. But not flailing and screaming in front of dozens of onlookers.

And in an autistic child, what may start as a silly little tantrum can quickly escalate into a full blown meltdown if they are unable to make themselves understood. Usually something has triggered this tantrum and if its not nipped in the bud it can get really messy really fast. Autistic children cannot control these meltdowns and are unaware that they are causing a scene and giving into them wouldn’t end the yelling whereas in a tantrum – it would.

Some children on the spectrum can’t handle loud noises

But back to spotting autism….

Let’s imagine that you are in a playground and you know that there is an autistic child playing in there but have no idea which one it is. What would be the first clue that you would look for?

For me, spotting that child would be as simple as looking for the one who seems to be on the outer.

1. BEING ALOOF:

The child who either plays alone or is trailing along behind the other kids desperately wanting to be included. It’s often wrongly assumed that autistic kids don’t care for other kids but often it’s just their underdeveloped social skills and lack of social intuition that are holding them back. Most of the time they desperately want friends but don’t know how to initiate conversations or interact with other children. These kids don’t read body language or facial expressions and may not understand if another child gives them the ‘leave me alone’ face. Children on the autism spectrum learn by mimicking their typically developing peers and you would be looking for the child who is ‘following’ rather than leading the group.

However – in some of the higher functioning children (Aspergers Syndrome especially) the child may actually be the ‘life of the party’ and come across as obnoxious, precocious, loud, inflexible and unreasonable. But it’s important to remember that this is not a character flaw – it’s indicative of their under developed social awareness. They just want to be included but don’t understand how to do this in a socially acceptable manner. Either way – the child has a definite “quirkiness” about them.

2: REPETITIVE PLAY

Children with autism may also indulge in a lot of repetitive play. They may sit and watch the spinning of a wheel for a long time or continue to retrace their steps and repeat the same actions over and over again never seeming to tire of the monotony. That’s because children with autism enjoy getting the same result every time and take great comfort from being able to predict the outcome in an otherwise unpredictable world. These kids may also group items together or line them up. Example: rocks in a line in a sandpit or leaves sorted into colour shades.

3. EYE CONTACT

A child who has autism will rarely make eye contact with strangers or with other children. They can sometimes appear to be ignoring you but this is rarely the case. I’ve been told by autistic individuals that they are unable to look at people when they’re spoken to because it confuses them and they have to stop listening in order to look. They say that looking in people’s eyes is frightening unless they know , love and trust the person talking. Often times a child with autism may become mute when a stranger speaks to them because they cannot form the correct words whilst their brain is in freak-out mode.

4. TOUCH

If a child is in fact on the autistic spectrum, they may react if they are touched, hugged or accidentally brushed up against in a playground setting. They may strike out at another child who playfully pushes, taps or attempts to cuddle them as they sense that their personal space is being invaded. Because of this, they can wrongly be labelled as ‘rough’ ‘mean’ or ‘aggressive’ but really it’s just their self-protection mode kicking in.

Or….a child who under registers stimuli may do the exact opposite and be overly affectionate and not seem to recognise those invisible boundaries that we all have. Either way – the behaviours displayed here in these two scenarios are an indication that there is something bigger going on with that child.

5. UNDERSTANDING VERBAL CUES

These kids struggle to understand and comprehend instructions especially if they’re complex or contain too many steps. So you’re looking for the child who seems to be deaf or ignoring their parents or who doesn’t register that they’ve been spoken to immediately. The child may explode if they are unable to convey their wants and needs to their caregiver and become frustrated if they’re not understood by other children.

6. REPETITION

An autistic child may repeat (and mimic) the phrases that other children use or insert lines from a movie or tv show into a conversation whether it fits or not. This is called echolalia and it is a very common communication tool for children who are developing speech.

7. RULES

If a group of children are playing together and one of them changes the ‘rules’ or starts to play it differently, the autistic child may react with aggression or anger because they are not coping with change and suddenly become frightened at their lack of understanding. Autistic children thrive on rules and routines and require them to function peacefully.

8. SENSORY STIMULII

A child with autism may severely under or over react to noises, crowds, smells and sights. This is all due to their sensory system either being overloaded or under registering. Most typically developing children won’t notice subtle changes in noise levels or the sun getting brighter but you can bet your bottom dollar that the over sensory child will be the first to react negatively.

9. UNUSUAL COMPASSION

Children with autism usually always have an affinity with nature and with animals. They seem to have somewhat of a connection that most of us just don’t understand. The autistic child may be the one who prefers to lay down in the dirt with a dog or finds a lizard underneath a rock. They may also become upset and inconsolable if another child steps on an insect and go into bat for the poor defenseless ants that are crawling up your leg!

Every single autistic individual that I have met has got a very gentle nature and a sensitivity to all forms of life that most of us could really only dream of.

10. DANGER AWARENESS

The last thing to look for is the child who has no apparent fear of danger or consequence. And this goes beyond the normal ‘rough and tumble’ boy stuff. These kids have an underdeveloped sense of caution and just don’t see the risks that most other children would instinctively notice. Look for the child climbing up the flying fox or jumping off the top level of the climbing structure or – *gasp* running onto a highway to get to the shiny object that has caught their eye over the other side.

Autism really is beautiful. It is almost magical and it is extremely rewarding to live with. But how do I know this? I and the mother of two boys who have autism and they have taught me so much more than I could have ever imagined.

Because of them, I now appreciate the smaller things that most folk often take for granted. I am learning to look for beauty in the most unlikely places and I no longer take anything at face value.

Let me encourage you all to dig deeper, invest into those “different” people in society and you will always find that it was more than worth the effort.

Onwards And Upwards My Friends…

I realised yesterday that my perspective has shifted a lot in the past few years and my mother’s intuition has been fine-tuned a lot more than it has ever been in the past. And this new perspective has helped me to view an incident that occurred yesterday in a brand new light. In fact – I was able to turn the negative into a very big positive and it’s the little things like this that keep me motivated.

By now most of you would know that I am currently staying up at my Mum’s with the children as school doesn’t go back until the end of the month. There is a ten day festival going on up here at the moment which is great for families and gives us all something extra to do at very little cost.

The entire main street of town is closed off for about 4 blocks and the streets are lined with performers of all varieties. It runs day and night and does include a lot of loud music, huge crowds and a lot of different smells, sights and new experiences. (Which I’m sure is a sensory overload NIGHTMARE if you have autism).

So bearing that in mind, I have given the boys headphones and chewy toys and have tried to keep the exposure to the festival minimal and closely monitored, however yesterday – despite my best efforts, it came close to ending very badly indeed!

We went to church in the morning (If you know anything about Pentecostal churches is usually very loud, crowded and in your face), and then we met some friends for lunch. Afterwards we decided to go into town and go for a stroll down the street to check out the action. I watched the boys closely and they seemed to be doing wonderfully. I smiled to myself because a few years ago we wouldn’t have even have attempted to do all of those things in the one day let alone attempt an event like that!

I realised our progress and started to relax a little and enjoy myself. I stopped to listen to a few bands and chatted with strangers and just had a really great time. We walked another little distance when we passed a performer with a very loud microphone and a huge crowd of people gathered around clapping, dancing and watching.

I stopped with Mum to have a listen for a few minutes until I saw Harley freeze……he stopped dead in his tracks, clapped his hands over his ears and tears started rolling down his little face. He looked up at me with his eyes pleading and said: “Mummy, there is too much loud, too much people…I need to get out, I need to go home now”….

So I grabbed his hand and dragged him into the closest shop and sat him in a quiet corner on the floor wrapping myself around him while covering his ears. I held him tight and he eventually relaxed into me saying: “Thank you, thank you Mummy, you are the best Mummy ever”.

I sat there and went through my options in my head. Our car was up the other end of the street and we’d have to walk about 2 blocks to get back to it…..that wasn’t going to work…..I spoke to Mum and we decided that Ella and I would walk back to the car and I would drive as close as I could to this shop and pick up Harley, Lucas and Mum. It worked brilliantly and peace was restored for another day!

And when I got home again, I began to think the whole thing through in a bit more depth. I started to mentally list all the areas of progress in my head.

1. Harley handled an entire church service in a new environment with people he had never met previously.

2. We went for lunch in a place that he’d never been before.

3. We were able to walk 2 whole blocks before Harley showed signs of not coping.

4. Harley not only recognized himself that he wasn’t coping but he was able to communicate that to me without screaming and melting down. He was able to use some of the anxiety coping techniques that we’ve been teaching him WHEN HE NEEDED THEM and for me….this is HUGE progress!

A few years ago – he wouldn’t have been able to let me know that he was close to losing it….he wouldn’t have recognized that split second and make the decision to ask for help – he would have just exploded and I would have been angry at myself for not reading him better and the rest of the day would have been a write off because coming down from a mammoth meltdown can take literally hours! Not to mention the fact that it drains him as well as us.

Harley didn’t reach the point of no return yesterday because it was nipped in the bud so to speak. Afterwards – told him how proud I was of him for using his words. He is doing remarkably well at learning that if he talks about something that I can then help him. (This is a phrase that my dear friend has been drumming into him for a while now). I’m seeing so much exciting stuff going on with him (in particular) lately that it warms my heart.

And lastly – I want to say to any parents of younger kids who seem to be massively unpredictable and hard work at the moment…..go back and read some of my earlier posts and read about the struggles I had with Harley only 3 years ago. I remember parents of older kids telling me that ‘it will get better’ and I didn’t believe them. I couldn’t believe them.

But you know what? It does, it really does. It may only be small things at the moment but combined with all the other ‘small things’ from the past (almost) 3 years since I started this blog – they all add up to massive progress.

And its only onwards and upwards from here…

A new year brings new things..

I learned many years ago that making new year resolutions was never something that was gonna work for me. I just don’t have the stick ability for anything.
I’m convinced I have some form of ADD or as my friend calls it: ADOS (Attention Deficit …Oh Shiny!)

I’ve never been good at finishing things that I start and I tend to give up when things don’t come easily to me. It’s not so much that I doubt myself or my own abilities so much as it is due to boredom overtaking me. Most of the time I simply couldn’t be bothered putting effort into things that I no longer enjoy doing, so usually….I quit. (And no, I’m not talking about jobs or anything in the workplace but personal hobbies etc….I’m not THAT bad!)

But thats the funny thing about parenting: Even when I’m not succeeding at it and continue hitting brick walls – I know that its not as simple as just throwing in the towel and walking away. However – having said that: I’m no Carol Brady – I still want to walk and give up at least once a week….I’m so far from the perfect Mum it even frightens me!

But here’s what I’ve discovered about myself: When rough times hit (and they do frequently when you’re raising kids like mine) I eventually get over myself and stick at this parenting gig not because I *have to* but because I *want to*. And there’s a massive difference in the two.

I have found that unless I’m doing something that my heart is truly in and am passionate about, I struggle to stay motivated. And yes…. I know that I have revealed some pretty massive character flaws here, but there you go. This is me. Take me as I am.

But the up side if all this revelation is that my kids definitely fall into the ‘totally passionate about and would do anything for’ category. There is literally nothing that I wouldn’t do for them.

Thats right: Nothing.

****

My sister was always career minded. She knew from a very young age that she wanted to be a graphic designer, so she went to Uni and became one. and shes a brilliant one too. She’s a go-getter and a doer. Always has been.

I however, have never really known just what I want out of life. I’m a bit of a floater you could say. I went through a small phase where I thought I didn’t want kids but then realised that being a mother was actually the ONLY thing I really wanted.

And I loved it from the second my daughter was born. I had found my calling. THIS was what I was going to be….a stay at home Mum. Forever.

But guess what I found out? Kids grow up. They become more independent and require less of you. Even though I consider myself fortunate for having my boys need me for longer (being slower to reach milestones etc) even they with all their daily struggles are becoming more and more capable by the day.

I would still have to say though, that for both of them (but especially Harley) – their biggest struggle by far would still be managing to cope and survive in the school environment. Over the years he has had some wonderful aides and therapists assist him and encourage him to reach above what he believes himself to be capable of and I cant thank them enough for that. We have seen incredible progress due to their commitment to helping him shine. Which is why I have made a big decision.

I no longer have children at home with me during the day and December marked the ending of the 12 month break I gave myself after my baby started full-time school. I am ready to re-enter the workforce but I am not interested in just earning a few dollars in a casual job. Nor am I interested in just doing whatever comes my way, no, this time I am the one with the passion and the go get attitude because I have decided to do something that I always said I would NEVER do.

I am going to go and study to be an education support worker (teachers aide). Because I want to be the one to help other kids reach their unlimited potential. I want to be the one to give the high fives when they achieve what they never thought possible and I want to be the one to give back what so many have given to my boys. I want to do something worthwhile and combine my knowledge of special needs as a mother with that of a classroom helper.

This isn’t big for some people, but if you know me and my aversion to sitting still and studying – it’s huge!

And my heart is in this one, so I know I will see it through.

And now that I’ve put this out there in big bad blog land……there’s no turning back….eeeek!

Still So Much Good Stuff To Come…

Me and my loudest child. Still not louder than me though

I’ve always been interested in people. I love all those little online personality tests and quizzes and love to learn about what makes other people tick.  I’m your typical sanguine – always wanting to be with people and not enjoying my own company very much. In fact – I pretty much hate being by myself – I get bored and need the people-to-people contact every day or I start to nosedive emotionally.

I also think that part of the reason why God gave me the kids that he did is because he knows how much people fascinate and interest me and he knows that I am the kind of person to dig deeper until I’m satisfied that I’ve learnt all that I can learn. Autism definitely adds a whole other layer to my kid’s personalities and a lot of the rules for typically developing kids don’t apply when you start to throw nuances like : sensory issues and still-developing social skills into the mix.

I have written a few times before about The Five Love Languages and how they helped me to better understand why Paul can be such a pain in the butt sometimes.

  Whoops! Did I really write that?

What I MEANT to say was that learning about love languages helped me to realise that he does in fact love me but doesn’t (even close to) speak the same love language that I do.

In a nutshell – There are 5 languages.

1. Physical Touch (not sexual)

2. Words Of Affirmation

3. Quality Time

4. Giving and Receiving Gifts

5. Acts Of Service

And everyone has a primary love language and usually a secondary one or two as well. They are the way that we show others that we love them and what makes us feel loved the most.

****

For example: My primary love language is Words Of Affirmation with physical touch and quality time following closely behind. That means that I give love via what I speak and write to people. I am more aware than a lot of people of the absolute power that words can have on a relationship in either a negative or positive way. The best way to hurt me is to ignore me, use harsh or insulting words to speaking to me or to withhold kind and encouraging ones as well. I am careful what I write or say to people because of this.  I am also a big hugger and I love to spend time with my friends.

 (And amusingly enough – I hoped to churn this post out a few hours ago but I got waylaid by chatting to a friend making this a perfect illustration!)

But tonight’s post isn’t going to be about marriages, or any type of adult relationship but about my kids. Specifically about my relationships with each of them and how the love languages apply to them individually. And lately I’ve spent a lot of time peeling back the layers of my children’s individual personalities to try to discover the best and most effective ways that I can love them.

Ella’s primary love language is Quality Time which actually makes me sad because the boys tie me up so much that it’s often hard to give her much of it. But we have been consciously making the effort to go out on Mum/daughter days a lot more often than we used to. The downside is that she is at risk of feeling unloved if she doesn’t get enough quality time with either of us. There’s always room for improvement though and I am determined to give her what she needs.

Harley was a no-brainer for me. He is exactly the same as me – Words Of Affirmation and Physical Touch. He loves his cuddles and a compliment can make him float for days. Conversely though, like me – he also gets extremely hurt by unkindness and needs to be built up very frequently. Things that other kids could just shake off can stay with him for a long time and can do a lot of unnecessary damage.  I understand the love languages side of Harley the most out of all of my kids but I am also regularly confused by how differently it presents on him compared to me. I think this has something to do with his wonderfully wired brain and how differently it processes things but I’m still working on figuring this one out.

And then there’s Lucas. He was a particularly difficult one for me to figure out. I had to do a number of quizzes on him until I had what I considered to be the correct answer but even now I’m still not 100% convinced.  I asked him to tell me what I do that makes him feel the happiest and most loved.

I put it to him like this:

Would you prefer:

1. A cuddle and kiss? (Physical Touch)

2. A new toy (Giving And Receiving Gifts)

3. For Mummy to tell you how proud she is of you (Words Of Affirmation)

4. Mummy to spend the afternoon playing Trashies with you (Quality time)

or

5. For Mummy to clean your room up and make you a cake? (Acts Of Service).

He answered that a hug would be his favourite which interested me for a few reasons. Firstly because it was the very first scenario that I put to him (and perhaps the only one that he actually heard and processed) so to get a definitive answer, I put different scenarios to him mixing up the order each time, But each and every time – it was Physical Touch that won out. The other reason that this surprised me was because every time that I hug Lucas – he only stays in my lap for mere seconds before jumping off again in another Tiggerific  bouncing episode.

So now – I’m wondering how much of a part that both of the boy’s sensory processing difficulties play in the way that they give and receive love and how much autism affects their ability to feel loved and safe when they need it most. I’ll explain further:

When Harley becomes overwhelmed by too much noise, too much light or by strong smells – he can’t stand to be touched at all and he becomes aggressive and sometimes violent and screams out the most awful things.  And it’s the same when he’s in the middle of a meltdown.

He has described to me on a good day that when people try to talk to him when he’s in that state that the human voice aggravates and irritates him more than any other sound. I find that incredibly fascinating. Especially since any other time – Harley  is incredibly affectionate and very generous with his hugs and kind words.

And Lucas – well he is similar to Harley in that he also cannot stand to be touched if he’s overwhelmed or melting down – and he says that the human touch actually  makes his skin feel like its burning. But here’s what I find amazing – As Lucas is coming down from an episode – he  is OVERLY generous with hugs and climbs into my lap and wraps my arms around him refusing to leave.

So the things that bring them comfort and calm them on a good day are actually the same things that can escalate an explosion on a bad day.

***

I already have huge amounts of much respect for all individuals on the autism spectrum but now: WOW!  It has gone up a few hundred notches. I’m sure that there are bundles and bundles of undiscovered information and so many more layers to peel back still for my children and  I know that I have SO much more to learn about all of this.

The exciting part?

It has become like a neat little project for me….. Bring on 2013!

Measuring success…

Image from snapsurveys.com

I’ll let you all in on a little secret: When people talk to me, write to me or ask me questions, I always go away and analyse the entire conversation and make mental notes afterwards. I have learnt a lot about myself as a parent, friend and person by trying to see things from other people’s perspectives.

A new follower on my Wonderfully Wired Facebook Page asked me just today: “How do you both stay on the same page as to what the ‘right’ thing is to do in a situation?”

I waited almost an hour before answering this because the question caused me to stop and think for a while before I felt that I could answer it properly. I actually laughed out loud when I first read it because from where I sit – we don’t agree on ANYTHING and are failing miserably as parents!

We almost never see eye-to-eye on discipline or parenting. I think he is too harsh and he thinks I am too soft. And our marriage has been through some mighty big ups and downs because of this but we are learning to focus on the child and their needs instead of trying to just be heard (or right) ourselves. So I wrote and told her that there is no right way and that it’s different for every family. It’s about working out what’s worth the fight and what’s not and about choosing to do what’s best for the child. It’s also about educating yourself and discovering the difference between naughtiness and sensory overload, between a tantrum and a meltdown and recognising the times when bailing out is your best option. Despite how you actually feel. (And wow do I struggle with THAT one).

I’m a very social person and having to learn to leave when my son has had enough was a tough one for me. But parenting kids in general (and especially when they have high needs) is ultimately all about sacrifice.

Sacrificing the need to be “right” all the time and sacrificing what you want to do in favour of what your child actually needs. But sacrifice isn’t always a negative word. Sacrifice can also mean: devoting, dedicating and giving.

Most of the time I am prepared to put in whatever it takes now because I know the rewards will make it all worthwhile one day. But there are many days where I still stomp and moan and carry one because “It’s not faaaaaaair, I can’t dooooo this!”  And I have spent a lot of time on my knees crying out to God begging Him to make my life simple and take away all the “hard”. I have also yelled out “What did I do that was SO WRONG that this is the life I’ve been given”.   So don’t think for a second that I breeze through this autism parenting thing…Or parenting at all for that matter!

But I’ve discovered that anyone who makes the choice to blog about their family and living with autism walks a very unsteady balance beam every time that they write. I have noticed that if I write too much about the hard times – I get criticized for being an attention seeker and for painting my children in a bad light, but if I blog about only the good stuff – there are people who read it and wonder why they can’t get it right and wish that their kids were progressing as much as mine are and wonder what they are doing wrong. I’ve even had people ask me what my secret is???

But here’s the thing.

NO family has it all worked out. NO family gets it right every-single-time and NO family could honestly tell you that autism hasn’t rocked their world in some ways.

And any parent with a child on the spectrum will tell you that often our kids will take one step forward and then ten steps backwards and it’s hard sometimes to stay cheerful and positive when you feel like screaming and throwing in the towel. But I try. And I keep putting one foot in front of the other and keep doing my best because they deserve nothing less.

However – I have learned a new way to measure how we are all doing. And it has NOTHING to do with comparing our life to other families. Even those families with autism because every-family-is-different.

I now look at a situation and ask myself – how does this compare to last week, to last month and to last year? And if I can honestly say that we have moved forward (even if only mere millimetres) than it’s marked as a success.

Things don’t have to be easy and wonderful all the time but I’ve learned that progress is progress no matter how small and insignificant it may seem at the time. 12 months ago we wouldn’t have even have attempted going to Costco but two days ago – WE DID IT!

I’ve put dreams on hold, I’ve opted out of a lot of things that I really wanted to do and almost every day I have to remind myself not to live in regret and for the most part – I am happy. I’ve learned that it’s no longer all about me. I have a purpose and I will do my best to make sure my kids grow up to be successful.

And that’s really all that any parent ever hopes for.

Frozen.

Has anyone heard that saying that goes something like this:

The little things that annoy you the most about a person are the things that you miss the most when they’re gone?

Yeah?

Well that.

And I realised how very true this is when I was out shopping today. I was on my phone chatting with my Mum like I do every day and we were talking about my blog post from last night. Mum was telling me that she was sorry that she never knew the extent of how much I hated school and how bad it really was for me, and I told her that it’s all ok because I never told her and Dad much about any of it anyway.

I finished the call and hung up and my mind was replaying the conversation in my head as I walked along.  I was mulling things over when I heard a deep male voice behind me give a hearty chuckle and make a comment to his wife and I froze. I stopped so abruptly that I caused the man and his wife to crash into me.

I fumbled my way around an apology and turned around and stared at him trying to make sense of the short man in his mid 50s with a long beard, bandana and dozens of tattoos that stood in front of me. He looked at me awkwardly and asked me if I was ok and I must have convinced him that I was because he smiled and continued on his way.

I remember watching his retreating back and trying to shake myself out of the trance I was in but realised that my brain wasn’t connecting to my feet and they weren’t going anywhere. I then noticed that other people were walking around me and I reached up and felt the hot tears that were slowly starting to make their way down my cheek. I wanted to run away but I couldn’t. I wanted to scream but I couldn’t get any words out.

I was acutely aware that people were staring at me curiously but I was still firmly planted in the same spot. I stood there for about five minutes just crying and sobbing and looking like a complete idiot because I was so overcome by unexpected emotion.

It was almost like I was watching myself on a screen. I was so removed from that moment that it actually really frightened me.

***

My Dad used to say a lot of funny things and he also used to say a lot of things that embarrassed us a lot when we were teenagers – like most Dads do I’m sure.

He was a stickler for “dad jokes” and when he adopted the vernacular of the youth of our era it would drive us CRAZY! He took a long time to learn the correct context for the phrase “sucked in” and “cool beans” was another favourite that we hated.

But the quote that he used most frequently that used to make both my sister and I absolutely cringe was the one that the man in the shopping centre used today. “The name’s Billy not silly”. And I don’t know why but for some reason, when Dad said that  it would always make me want to hide under a rock. It grated on me big time.

It’s will be 5 years this February since that nasty cancer took Dad from us and I honestly thought that I was doing ok, but the human brain is a complex thing and it plays tricks on us at times. Somehow the phrase that man uttered triggered enormous grief in me and I plunged into fright mode. And that’s never happened to me before so it was a very scary experience to have had but I couldn’t help but wonder if this is what Harley’s body does when he is thrust violently into a painful situation.

I mean…everyday things that most people take for granted are enormously overwhelming to a child like him. Most of us don’t notice the sound of the flickering fluorescent lights at the mall; all we hear is the laughter and chatter of the crowds.

Most of us don’t recognise the tune playing over the PA within the first 2 bars of the song, in fact we probably aren’t consciously aware that there is even music at all. Most of us can walk along and chat with a friend without scanning the centre for imminent dangers constantly and are able to enjoy the experience somewhat. And I doubt that many people have to count the tiles on the floor or how many shades of a colour are in a rack of clothing or recite phrases to themselves over and over just so that they can keep on top of their anxiety and not freeze up from fear when they are out shopping.

But these are all the kinds of things that Harley has to do so that his body doesn’t make him do crazy things. Every single time. Sometimes he’s not even sure himself what sets him off just that he is freaking out and can’t stop it or make his body obey him.

Today was certainly a huge learning curve for me and it’s made me appreciate just how much courage it takes for my boy to even enter a shopping centre let alone endure an hour in there. I think he is truly amazing.  And I have even more respect for how hard he tries and how far he has come.

As for me?

I’ll be ok. I have wonderful memories and tons of photos to get me through.

Like this:

Wordpower

When I was growing up, I only had one sibling. My sister is 14 months younger than I am and was in the grade below me. With us being so close in age, it was common for people to compare us. (But not our parents, they treated us as individuals.)

My sister was always is smart.

She did really well at school and went on to study graphic design at university and more recently floristry.  She is incredibly talented in all areas of design and her home regularly looks like something out of a magazine.

I on the other hand completely suck at every aspect of design and couldn’t colour match anything to save my life. And I don’t particularly care for it either.

For me school was difficult, frustrating and mind-numbingly boring. I used to turn up every morning in grades 11 and 12, get my name marked off and then walk to town to go shopping for the day. (And oh-wow did my grade 12 marks reflect this! )

Academics wasn’t and still isn’t my thing. All I ever wanted out of life was to get married and have a family, she always had a career in

This is me in grade 12. Complete with a chip on my shoulder…

mind.

I remember my grade 10 math teacher standing me up in front of the class and humiliating me by pointing out that my younger sister was able to do the maths problem that I couldn’t and asked me what was wrong with me. The whole class laughed at me and from that day onwards I never turned up to his math class ever again.

And he wasn’t the only teacher who I had trouble with. My geography teacher hated me and went out of his way to make my life hell for years. It all started because of a class discussion on evolution and he asked me what I thought …… so I told him.  He opposed the creation beliefs that I have and disagreed with me about absolutely everything from that day onwards. Publicly.

Then 4 years after leaving school I returned home to live for 3 months while I moved from one capital city to another. I moved in with Mum and Dad to save money and worked as a waitress in a local café. One day this teacher came in for lunch and gleefully jibed me in front of his friends saying: “Well, well well….I knew you’d never make anything of yourself, and look at you now. Serving ME coffee!”

Those comments have now stayed with me for over 21 years and although I’ve forgiven them both, I have seen them down the street a few times over the years when I go home to see Mum.  I still smart when I lay eyes on them and the reason I still get a reaction is because words have power.

And words spoken over or to a child can have either a devastating or uplifting effect.

(The tongue has the power to bring with it life or death – Proverbs 18:21)

I spent my school years feeling like a massive failure because my sister did so well. I felt like I was an embarrassment to my parents so I clowned around instead. But I can honestly say that I was ALWAYS proud of my sister whenever she did well. I was excited for her and thrilled when her university offer came in. By then I had realised that higher education wasn’t for me because I HATED the thought of studying anything. I made my peace with being the loud and proud goofy sister instead.

My Lucas is a textbook aspie. He has the high intelligence, the amazing vocabulary and the hyper-verbal speech. He is excelling in all areas of his schoolwork and is amazing us with what he is achieving. He’s like a mini Sheldon and what most people think of when they hear the word: Aspergers.

I can’t tell you the number of times that people have reminded me that Einstein, Isaac Newton and Beethoven are all suspected to have had aspergers traits and then follow up their observation with “See, your child is going to be brilliant one day”. (Like they need to convince me that my child is going to succeed DESPITE their diagnosis).

But then I have Harley. He is not the classic aspie. He struggles with almost every aspect of schooling from reading and writing through to socialising with other kids.

He puts so much incredible effort into just BEING in school that there’s not much energy left for learning. Add to that his difficulty coping with noise, crowds and variations in temperatures and you have a child who is constantly being subjected to pain and discomfort. His sensory processing issues are through the roof most days.

It’s like forcing ME to go cold turkey on caffeine and then sticking me in a room full of children for 6 hours because being a teacher is MY idea of hell)……I would NOT do well under those circumstances yet Harley faces this kind of discomfort AND MORE every.single.day and he does it with grace.

Harley doesn’t fit the mould of “typical aspie” that is so often assumed on him and the label does more damage to his personal opinions and expectations of himself than anything else.

And I know that comparing my boys and their abilities is not only stupid but incredibly dangerous. And  I am no longer hurt or angry at my high school teachers because I truly have forgiven them but I still remember both instances very clearly. That’s why words have to be so carefully chosen before uttering them.

My boys both have wonderful teachers who speak only the very best over my boys and because of that, I know that they will do well later in life. And that brings me great hope.

But it’s not all bad. My own high school experiences have made me a better mother. I know the effects of negative comments and off-the-cuff remarks so I am super careful to watch what I say to them lest they carry around baggage like I did.

And now that I am an adult , I realise that although my sister is so much better me academically, and in design – I also know that I am much better than her in other areas.

And this is what I am trying to teach my children.  Everyone has different and unique abilities. We are not all made the same way and no-one is good at everything.

Last night was the junior school presentation night. I had suspected that Lucas might do well because of the glowing reports we have been receiving all year whereas conversely, I also knew that Harley has struggled a lot.

And I was thrilled when Lucas earned the medal for Excellence in Mathematics. He stood up on that stage proudly smiling from ear to ear while everyone clapped. And I was sad for Harley when I watched his disappointment at not receiving an award but I knew that as rough as it seemed – it is a necessary part of learning about life.

Paul and I rock-paper-scissored each other to decide who was collecting which child at the conclusion of the night because we could tell Harley was borderline and knew it would be hard work. He won the match so I headed over to the row Harley was sitting in and he ran towards me and punched me in the stomach. He then head-butted my arm and kicked me before throwing himself down on the chair beside him. He wasn’t happy at all.

He didn’t do a very good job of hiding his disappointment so I sat quietly beside him to let him get it out of his system. Finally he looked up at me with tears in his eyes and said: “I’ll never be as smart as Lucas, I’m such a dumb head”.

I stiffened and knew that I had a defining moment in front of me. I reassured him that he wasn’t dumb at all and that there were so many children that not everyone could possibly win an award. I listed all the things that he is great at and reminded him of his strengths. I pointed out that he wasn’t the only child in his class not to receive an award and assured him that I was incredibly proud of him because I knew how hard he had been working. I asked him to try to remember to be happy for his classmates who did win awards because that’s what good sportmanship is about.

At that moment I saw Lucas running toward me with Paul and Ella following closely behind.  I looked at Harley and said: “I know you’re sad right now and I do care very much but I have to tell Lucas that I’m proud of him because he deserves to be praised for his efforts.”

Lucas threw himself into my arms and I hugged him telling him that I was very proud of him. I glanced over his shoulder at Harley and was amazed and touched when he reached out and patted his little brother on his back saying: “Well done Lucas”.

My eyes filled up as I realised how huge this was for a child who is not only in the depths of disappointment but supposedly (according to some of the ridiculous literature out there) not possessing empathy.

Well, if that’s not progress and a perfect example of empathy I don’t know what it was!

It’s a hard thing to have to deal with sadness in one child whilst not taking away from or downplaying the achievements of another but I came home last night with a big grin across my face.

BOTH my boys did me proud. And it was an incredible night.

“Have you got a minute…?”

That was what I heard this afternoon as I was walking across the school playground, Harley’s OT had spied me and called out to me. She said she had been hoping to see me so we could ‘have a little chat’….

And this is where I need to tell you that I admit that I held my breath a little bit. Because usually when a teacher, aide or therapist approach me, it’s not good news and experience has taught me that I probably won’t like what’s coming next.

But not today. Because today she had a major breakthrough with him and wanted to share it with me.

For weeks now he has been turning up to his OT lesson without his workbook. She had said that she thought it odd that I had never packed it (it stays in his bag permanently) but then today it dawned on her what was actually happening.

She had a light bulb moment and couldn’t believed she’d missed it for so long!

As she usually does, she waits until he’d settled in his seat and asked him if he had his book with him and he (predictably) replied: “No”.

So then she asked him where his work book was and he replied: “In my school bag”.

So he had been answering her correctly every single week when the direct question “Do you have your work book here”? was asked. But it had never occurred to him to go back to his classroom and get it out of his bag! Such a simple thing that had been complicated by his difficulty comprehending verbal instructions or questions.

She also mentioned that he had been a lot more settled than in the past and enquired whether that was because the stress of the school year is almost over. I ‘casually’ mentioned that he has now been on medication for almost 2 months and her face broke into a smile and understanding was written all over her features.

She nodded and said: “Wow. What a massive change I’ve noticed in him, he is more focused, more agreeable and much calmer than I’ve ever known him to be. I think you made the right decision”.

And instantly I felt the validation that I needed.

Harley’s Paediatrician first suggested the medication route a few years back but I was adamant that I wasn’t going to drug my child. I dug my heels in and determined that I would somehow ‘fix’ his anxieties, aggression issues and OCD tendencies myself.

But I couldn’t.

I eventually had to admit that it was over my head and ask for help.

Since he has started seeing his psychologist combined with the pills, our family life has improved dramatically.

Beyond description.

And now that he is able to gain more control of his emotions, he can actually apply the coping techniques that he has been taught previously before he gets completely overwhelmed.

So its a win-win as far as I’m concerned!

His teachers have noticed a positive change in him too so I’m even further and further away from beating myself up about medicating him.

I feel like I have my little boy back. The one that has been buried underneath layers of angst and fear for 9 years. I see joy in his eyes and happiness more often than ever before.

But please don’t get me wrong – I am not touting a magic cure-all pill for autism. (In fact I’m not ever dipping my toes into THAT murky pond) and I am definitely not advocating for going the medication route because choosing to medicate your child is a very personal decision and it will never be for everyone.

We have been under a remarkable Paediatrician whom I trust implicitly for years now and we weighed up ALL options over 3 years before deciding to bite the bullet so to speak. So this wasn’t a hasty decision at all.

Harley still has and will always have autism. We are just addressing a common symptom of ASDs. I am aware that this is a touchy subject with some folk but I’m simply writing about our family and our experiences and I won’t apologise for doing the best that we can with what information we have available to us at the time.

I love my kids and I want them to be the best that they can be.

I want to see this smile as often as I can. He’s just SO cool isn’t he!

The Lorax got it right.

image via alittledelightful.com

Today I went to a Sue Larkey seminar and she was fantastic. As usual.

But I’m not going to write specifically about what she taught us today but instead I’m going to write about what I personally took away from the seminar.

Let me flash back to when I heard Sue Larkey talk for the very first time quite a few years ago now. It was 2008 and Harley was only 5 years old and had only very recently been diagnosed with autism. I was attending my very first Tony Attwood autism seminar and Sue was a guest speaker there.

I remember sitting in that crowded auditorium with literally hundreds of other parents, teachers and carers listening what seemed like hours and hours of information, strategies, advice and ideas and I was overwhelmed and distraught to find out that there was so much that I didn’t know and needed to learn to help my boy.

I came home that night and sat in my bed and cried and cried and cried for literally hours. It was almost like I was reliving the emotional distress that I felt when I first learned that he had autism. I was emotionally and mentally overloaded and felt an enormous sense of helplessness washing over me in tidal waves.

I asked myself: How could I possibly ever learn all THAT?

At that first seminar I took very few notes and absorbed only what my brain could handle but there was a handout (thankfully) that I was able to dive into and explore much later on when I had the brain space to do so.

Gradually, I started to seek out information in my own time and strived to learn as much as I could. I wanted so badly to understand the workings of my son’s wonderfully wired brain. So I started observing him at play, with strangers, with friends and in his classroom environment whenever I went in to help and I found that there was an absolutely brilliant child hiding behind his struggles.

In him I recognised my own stubbornness and refusal to be told that I cannot do something and it spurred me on even further. I threw myself into discovering ways to help him to be the best that he could possibly be. I stared down the challenge and determined that he was going to be successful NO MATTER WHAT!

And slowly – things started to become clearer and clearer.

Then I met my friend LISA who is an adult on the spectrum and my eyes were opened to a whole new level of understanding and possibilities. Seeing autism through the eyes of someone on the spectrum is Uh-mazing!

Even today in the seminar Sue played us a few videos and every single one of them was an interview with an individual with autism. Sue recognises that we can learn SO MUCH from those who LIVE with autism personally and can explain it first hand to those of us who are really only textbook trained. She featured Temple Grandin and Carly Fleischmann. (See video below).

.

Honestly…..both of these women are remarkable and well worth the time spent watching some of their videos.

Like my wonderful friend Lisa – these amazing ladies have really opened my eyes and increased my understanding of autism and sensory needs in my boys.

But do you know what I took away from today that surprised me more than anything? What amazed me and gave me the boost that I have been needing oh-so desperately lately? And what reassured me that my boys are in fact going to be ok?

 Confirmation.

She confirmed for me that my gut instincts are spot-on when it comes to my boys. A lot of the stuff that she shared about was stuff that I am already doing with them. Much of which she suggested, spoke about and taught were things that I am already instinctively applying to our family situation.  And these are things that I have learned myself through trial and error and from applying ideas that I have either researched or learnt myself on my own time.

No-one taught me a lot of this stuff – I have learned most of it just by simply following my own maternal gut instincts.

And remember that 4 years ago I was scared out of my head that I was going to somehow fail my child and that he was doomed to a life of mediocrity because *I* couldn’t be the mother that he needed.

~

I remember being told by parents with older children on the spectrum that ‘it gets better’ and I scoffed and rolled my eyes at them. I couldn’t see past the next ten minutes and all I could see was hourly meltdowns, tantrums, hurdles and struggles. I had difficulty believing that it wasn’t always going to be as hard as it was at that moment. But that does really honestly change.

You still experience different levels and intensities of emotions with your child but the battles change and your coping mechanisms increase.

So I want to encourage anyone who is new on this journey and let you know that it DOES get better. It will probably never be easy all of the time but even regular parenting rarely is.

Now let me explain something important here: I am not university educated, I do NOT claim to know everything there is to know about autism and I still learnt a LOT of things today that I didn’t know before. There is always more and more to learn. I am certainly not a scholar and in fact I failed grade 12 because I hated school and never really applied myself so you don’t need to be blessed with super duper intelligence to be a successful parent to these amazing kiddos.

I believe that the most important thing you can give your child is love. If you can love them and accept them just the way they are, you will find that things naturally and gradually fall into place.

It IS overwhelming at first. It IS scary and it IS terrifying when you realise just how complex ASDs are and what they bring with them but you don’t need to know EVERYTHING to effectively parent your child.

You only need to love and focus on your own child and work on helping them. If you love them you will naturally want the best for them anyway and find that information is unconsciously absorbed through applying new methods and strategies.

When I look back to 4 years ago and realise just how far I’ve come without even really trying – I see that there IS a light at the end of the tunnel.

I will NEVER know all there is to know about ASDs because there is so much to learn. But I am in tune with my boys and their needs.

And I know that all of you love your kids too so I’ll finish with one of my all time favourite quotes from Dr Seuss’s The Lorax:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Who are you going to listen to?

When people ask me “What exactly is autism” I usually answer with this: “A complex neurological wiring that presents differently in every single individual on the autistic spectrum”.

Because that’s just it – there is no one autism. It differs greatly from person to person and whilst they share similarities, each individual is unique and has their own strengths and weaknesses. And too often, people compare what they know autism looks like on someone’s daughter, son, cousin, nephew, niece or friend that they know personally and assume that unless their child is exactly like that – there is no chance that there could possibly be a spectrum disorder lurking in their own child.

But there are hundreds of undiagnosed kids out there. I see them everywhere I go, I have acquaintances with kids who desperately need evaluating but I can’t say anything because its not my place because I am “just a parent”.

Not as in only a parent, but as in not qualified to diagnose autism.

And thats ok because that’s true. But I know autism from a different angle than a diagnostician does, and a different angle to how a teacher might see it and I experience different elements of autism to what a textbook teaches them. I’m not a professional on any level but I know how autism looks in my own family. And that’s definitely worth something.

I know that how my boys appear in public and what we live with are two completely opposite things but that even in those moments where the untrained eye wouldn’t necessarily see autism – I still can.

I can look at my boys across a playground and see subtle things like that tiny moment of hesitation when they are spoken to by another child, the way that they move their bodies in either sensory seeking or sensory avoiding ways and the facial expressions that convey their struggles to me. And this is not just because I am their mother, but because I have learned what to look for so therefore I can no longer not see the autism.

And I can also see it in my friend’s children who are already diagnosed on the spectrum. I see those little quirks, hear those speech anomalies and observe the giveaway telltale signs that would be easy to miss if you didn’t know what you were looking for, but those kids also hide it very well in most situations. And often not even deliberately.

Even though its the doctors and health professionals who play a huge part in diagnosing our kids, they also need information and data from parents to complete their diagnosis, so what we observe about our children and report to them is an important part of the bigger picture. We do not have the final say but what we bring to the table DOES matter. We need to work together to achieve success in getting our kids what they need and deserve.

I know a reasonable amount about autism from living with it every day and from being given remarkable first hand insights into the wonderful workings of the autistic mind so it makes sense that I also notice indicators in other children almost everywhere that I go.

I see children who sit with their legs in the “w” position while playing and children who walk on their tip toes frequently. I read about parents who have children who have been terrible sleepers for years despite their best efforts to make it work and my heart breaks for those families because I feel their pain all too well.

“W” sitting
image via http://www.alignedandwell.com

Tip-toe walking
image via http://www.examiner.com

I hear about kids with high anxiety and debilitating panic attacks, and about the children who freak out if their routine is altered. And stories about kids who can’t stand to have different foods touching on their plates or refusal to wear a certain fabric and wonder if there is something more going on.

I notice photos of children who refuse to look at a camera, I see their awkward smiles where their eyes are glazed over and absent and I observe behaviours in public places from a whole new perspective since learning about the sensory issues that children on the spectrum have.

I am often told stories about the cute things other people’s kids do like lining up their toys or arranging their belongings alphabetically, in colour order or in patterns and big loud clangy alarm bells go off in my head. If someone tells me about the odd things that their child collects or shows me photos of the child immersed in a special interest of theirs and appearing unaware of their surroundings or other people because they are so engrossed, I have trouble not shouting: ‘ding, ding, ding’ in their face!

Lining up toys
image via http://www.mariasspace.com

And while its true that none of these above mentioned quirks alone mean that the child necessarily has autism , they are all indicators of autism that are often explained away as other things and might one day need to be explored further. And it saddens me when a parent is told by another well meaning friend (or worse; someone who works in childcare or some branch of medicine) only what they want to hear instead of encouraging them to follow their gut instincts.

Sometimes, when a parent tells me about unusual things that they have noticed about their child whom I already suspect could be spectrummy, I have had to learn to listen, smile and subtly suggest that if they are concerned that they should seek out a professional opinion. Because at the end of the day, my opinion is just that; my opinion. I would hate for my word to be taken as gospel when a child’s future is at stake. But so many parents DO take reassurances from friends, co-workers and sometimes even Doctors who don’t explore concerns properly.

I have had a few friends tell me things about their child that concern them only to have them finish their sentence with: ‘but it’s not autism, because my child is not like yours’ or “I know someone who works in ‘such and such a place’ and they told me that he/she is normal”.

UGH! If you’re worried about hour child’s development in ANY area, get your child assessed properly. And if you’re not being taken seriously but still have strong concerns: fight for your child!

Stand up and push until you get the answers that you need! Be the advocate your child needs.

In cases like this, I usually ask my friend if they think its would be better to ask the question and have it explored and dispelled rather than take someone’s word for it just because they don’t want to cause waves and end up with a child who needs so much more help than they would have if it were picked up earlier.

I then follow with my brain tumour story to illustrate my point.

I had a numb face, an awkward gait, was extremely clumsy and losing my hearing and the biggest indicator was something that I couldn’t describe in any other way than the non-specific “something just doesn’t feel right”.

I was seen by 7 different Doctors who gave me answers like: sleep deprivation, post natal depression (Harley was only 2 weeks old), facial palsy from pushing during childbirth and the good old ‘stress’ diagnosis but it wasn’t until I followed my “gut” instinct and demanded further testing that the 5cm tumour was found growing dangerously close to my brain stem. So if I hadn’t have followed my gut instinct and listened to well meaning friends and some Doctors who were willing to write my concerns off without further exploration, who knows how this story would have ended?

I get that this is a touchy subject, I understand that this may be confronting to read for some people and I’m sorry if I’ve hurt anyone. This is truly not my heart at all.

And no, I’m not writing about anyone I know personally here, I just know how much difference early intervention makes in a child’s life and I’m passionate about children receiving whatever help they can so that they can live their best life. Yes – we’ve had many ups and downs here since my boys were diagnosed but I KNOW that now I am doing everything in my power to give my kids the best start in life.

I used to wonder if things would be better if we’d never found out and sometimes wished that I’d kept my head in the sand for longer because its often all too confrontational and downright hard, but now I know beyond a shadow of a doubt that asking the questions and requesting evaluations was the best move I ever made for my boys.

Because like most parents, I really do just want the very best for my kids.

They deserve that.

Wordless Wednesday 7 November 2012

Do you know how much self control he exercised here?