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!

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

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…

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.

I have love.

I’ve was sitting down at this computer for several hours this morning writing out whatever came into my head. I was trying to process some big stuff that’s going on here and writing it out usually helps me to make sense of it all. Heck – I stayed up most of the night trying to write it out and got nowhere.

And it didn’t work today either.  At all.

Words were looping in my brain and the solutions all seemed so far off. So I turned on some music, closed my eyes and tried to slow my brain down by forcing my thoughts to go elsewhere.

 I do wonder at times like this just how much aspie there is in me. Maybe I’m not as neuro-typical as I first thought? Or maybe this is a normal reaction to too much stress and confusion.  I just don’t know and don’t particularly care right now.

I turned off the computer and moved over to the lounge room to lay down on the sofa. I could hear the children playing in the background – the sound of the Ninjago app I recently downloaded was coming from the iPad.

My daughter was watching one of her teen shows on TV and the little one was rolling around on the rug piling cushions on top of himself because he was seeking sensory input. I looked at each of them and smiled. They really are everything to me. So different to one another – so unique in their own special ways.

Ella walked over to me and handed me a coffee. It was strong and black – just the way I like it and sat down beside me putting her tiny waif arm around me pulling me close and kissing the top of my head. The daughter was comforting the mother – so wrong yet so RIGHT. And this action in itself is HUGE because she is not a touchy-feely person at all. But my girl sensed that I needed to be held.

In that moment I thanked God for allowing me the privilege of raising her.  I love her so much and can’t believe that I have been trusted with so much.

I looked over at my big boy and noticed him reading his new Ninjago book intently.  He was engrossed and sitting on his haunches just like my Dad used to do. A tear came to my eye and I wiped it away quickly. I couldn’t afford to lose it, there was too much to be done.

My little one had progressed to doing laps of the living area. He had set up an obstacle course with toys, bean bags and cushions and was jumping, skipping and hollering with delight. My problems suddenly seemed so insignificant.

I closed my eyes and lay my head back down and drifted off to sleep because I had been awake for most of the night. When I awoke later I heard giggling in the kitchen and I crept out to see the three of them working as a team. They were making me the most disgustingly wonderful sandwich I have ever seen. And instantly nothing else mattered.

I realised right then that I have everything because I have love.

It may not always come from where I most desire it, and it is sometimes disjointed and awkward and usually messy, but I have love.

Thank God for love. Thank God He loves me more than any other human being could possibly love me.

Thank God that He sees me and not the mess I have made of my life, and He loves me still.

Have a great weekend all.

x

Yes – it’s an old pic but the only one I could find with all 3 kids in it

Thankful

I can clearly remember the first time that it really hit me that I am a parent.  And I’m not talking about the moment I saw two red lines on the home pregnancy test, or the moment when the Dr confirmed my pregnancy or even the first time that I looked into my new daughter’s eyes 3 hours after the most pain I’ve experienced to date.

I’m talking about the moment when the reality hit me that I was no longer “Daddy’s Little Girl” or “Mummy’s Princess” but a grown up who now had to be the one who would be looked up to instead of the one doing the looking up.

And I’ve gotta tell you, it scared the absolute crap out of me.

As a child I remember running into my parent’s bed in the middle of thunderstorms and being comforted just by sensing them near me. And I recall many times when I got lost at the shops momentarily until my parents sought me out. I even remember my Dad sitting on the edge of my bed and praying that fear would leave me as I shook because I was so frightened of the dark. He turned the toilet light on that night and it stayed on for many years afterwards.

But when that day comes that you realise that YOU are now the go-to person when a child is seeking comfort, it can be both touching and overwhelming at the same time. My kids look to me with admiration and total trust and rely on me to be their safe place, I am the one that they run to when the sky is lit up with lightening and the house feels like it’s shaking from the thunder. My bed is where they end up snuggling into me, and I am the one who goes into bat for them every time that a situation starts to escalate and become beyond their control.

It’s a lot of pressure and at times can be frustrating, tiring and really damn annoying. But I have come to realise that I am extremely and totally blessed beyond belief.

I get to be a safe place. 

And that’s a blessing that a lot of people will never know. So I’m definitely not complaining.

~~

I have gone back and forth over whether or not to add my 2 cents worth to the shooting tragedy in Newtown Connecticut a couple of days ago and almost decided not to write anything in case it appeared that I am trying to score hits on my blog by doing so. And I don’t want to use something so horrific to attract traffic here; which is why I am not going to add any tags containing those words.

What I am about to write is for you guys; the faithful readers who already know me and know that it’s not my heart to benefit from things like this.

~~

Two of my children are in the age group of the children who were massacred so it was really close to home for me. I have done a lot of thinking since the shootings occurred and my heart is aching for those families who have just experienced more tragedy than any other human being should have to bear: The loss of a child.

They will never get to be their child’s safe place ever again. They won’t feel the warmth of a small child snuggling into them seeking protection and they would give ANYTHING to be able to hold their baby in their arms one more time. And there are many other families who are also affected because their child was one of the “lucky” ones who got away. These babies have been exposed to things that no human being should ever have to witness in their lifetime.

I have written a lot about how hard I find parenting on this blog. I have written about the good times, the shocking times and almost everything in between. But from now on – even when I’m in the heart of one of the worst moments imaginable – I vow to remain acutely aware that I am blessed just because I get to be called “Mum”.

I’m not weighing in on arguments about gun laws, mental health issues or the concept of taking God out of schools in America (as has been in the media constantly over the past few days). There are many other bloggers far more qualified than me who are already writing about the bigger issues.

But as a Mummy blogger I am going to say that I am going to remember that no matter how frightening and overwhelming this whole “being a parent” thing can get – I will make the choice to be thankful.

• Thankful that I can hold my babies close.
• Thankful that I can be a safe place even at 3 o’clock in the morning,
• Thankful for life.

For me – I’ve come to realise how sad it is that it has taken something so tragic for me to recognise how blessed I am.

I will continue to pray for the families who have lost everything.

I really  wish that I could do more.

Deeper

I’ve been pretty slack at this whole blogging thing lately. I have had a lot to say but have been unable to put it into words that I’m comfortable enough with to publish.

Because the truth is, I’m hanging on by a thread at the moment. I’ve become pretty good at hiding my despair but thankfully, there are three people in particular in my life who are always there on the end of a text, phone call or email who keep me from completely losing it.

And they are all able to read between the lines and work out what’s really going on. I love all of them so dearly.

But even so, there is still so much that I really need to write out and deal with and I’ve struggled with writing it out ever since my writing was harshly criticized and made fun of recently.

I’m struggling with the bigger things too.

Like our visits to Harley’s psychologist. I haven’t even processed the information that she gave me on his first visit let alone the other times that he has been. He is just so complex and his issues are way over my head and capabilities and frankly: it scares the heck outta me. I’m not sure that I’ll ever be enough when it comes to helping him.

And the out-of-control behaviour that we are seeing in Lucas at the moment is something that I’ve honestly never seen before. I wonder if its an end-of-year exhaustion thing or whether he is struggling with stuff I can’t work out? And I wonder how deep it goes?

And if he will develop similar anxieties and fears as Harley and end up needing medication too? It’s all too much to get my head around.

Not to mention the friendships and relationship stuff that everybody has. Marriage is so damn hard at the best of times and the pressure increases when you have children who need so much more from you than the average child. I worry that my well will run dry and there will be nothing left to give.

There are already areas of my life that I have checked out of prematurely. It’s just all too overwhelming at the moment and I’m getting tired of just treading water all the time so it’s become easier to do nothing rather than make the wrong decisions.

Maybe that’s a bad decision? I don’t know, but survival mode does interesting things to a person. This funk I’m in has brought some rather abstract poetry out of me so I guess it’s not all bad.

Like this:

Hurting head and aching heart,

Needing some reprieve,

Wanting guidance,

Desiring peace,

But don’t know where to start.

.

I close my eyes and lay my head,

Down on my folded arms,

Wanting rest,

Desiring release,

From all those things you said.

.

As days unfold and choices come,

I don’t know which ways up,

Wanting love,

Desiring grace,

Before I come undone.

.

Then night fall comes and brings with it,

More pain and hopelessness,

Wanting answers,

Desiring truth,

I can’t take another hit.

…

Share this:

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.”

One Mum’s trash is another Mum’s treasure :)

Yesterday, Ella and I went to church together and left the boys at home with Paul because sometimes, it’s just not worth the fight. I sat with my dear friend *Hope and as usual, she blessed me with her wisdom, her compassion and her desire to help other people.

We were sitting behind another friend who had her little boy with her who was getting a bit restless so Hope rummaged around in (what we call her Mary Poppins bag) and produced some paper and coloured pens to draw with. She drew an upside down cat and encouraged him to draw too.

The little boy’s Mum sat down beside him and also tried to get him to draw and eventually he picked up the pen and scribbled all over the cat! I giggled and pointed it out to Hope and she smiled and said: “It doesn’t matter – he’s engaging with his Mum, that was the whole point”!

Wow!

Hope probably doesn’t realise what that tiny comment meant to me or how the words rolled around in my head for the following 12 hours or so!

“Engaging with his mother”. I just couldn’t shake it!

I thought about my relationship with my own kids and knew that when it comes to engaging them – I rarely do. And that’s not because I don’t know how to, or because I don’t have the time to, but because most of the time: I don’t want to.

That’s right, I don’t want to……..I’m over it. O.V.E.R!

Most school afternoons I am exhausted within half an hour of collecting the kids from school. The constant yelling, running, jumping, flapping, bouncing and spinning mixed with mindless chatter and monologue-ing just about does my head in. I often develop a headache around 3pm and tense up and usually end up putting myself in a time out!  I go into my bedroom and sit on my bed, (or in my wardrobe on the more desperate days) and escape the chaos for as long as I can get away with it!

I’m not really that clueless though – I do know that my kids need to decompress after a long day at school and that they require some sort of loose routine to help them to do that, but organising and scheduling does not come easily to me at all. I fight it a lot more than I should.

But I cannot just tell my kids to “go play” because they simply don’t know how to.

For a child who is developing typically, they are born with play skills that are flexible, spontaneous, creative and also voluntary. Playing comes naturally to them and it’s how they learn about their world. Play teaches children how to self-amuse and be independent when they need to be and helps the child to build confidence in themselves and their abilities.

But, children on the autism spectrum often need to be taught how to play. It sounds strange I know, but children with an ASD often have repetitive, non-functional and rigid play with very limited interests. Because of this they struggle to learn skills to help them to socialise with other children and they don’t instinctively know “how” to play make believe type games. (This is why it’s difficult to engage with children on the spectrum and in my son’s case – why he often explodes in anger because he can’t figure out what he needs to do next or how to do it!)

There is hope though. The best way to engage a child on the spectrum is to find out what they are interested in. Find out what makes them smile, what excites them and what makes them feel safe. And then use that interest to engage with them and teach them necessary life skills through play.

At the moment – both of my boys are mad about Trashies! (Trash Packs).

The trashie army

Our house has been overtaken by them, and a dear friend often buys the boys new ones as rewards and incentives. So this afternoon once we got home and wound down a bit, I asked the boys if they would “help” me to sort the Trashies out.

I asked them if they could help me to put them all in groups of the same colours and to help me to figure out which group had the most Trashies in it and which one had the least. Of course they were in their elements because this type of activity is well documented as being something that ASD children love to do. Grouping things, lining them up and organising are all known to be comforting to individuals on the spectrum. So ‘together’ we sorted them all out.

Because I was playing alongside the boys and not talking to them face to face, they were comfortable enough to tell me about their days at school. They were super-focussed on arranging the Trashies and there was not one single harsh word spoken between them the entire time. This alone is HUGE progress because when you have 2 sons on the spectrum and NEITHER of them possessing very good social skills, play skills or knowing how to play independently – there is always a lot of fighting going on. But not today!

Next we counted them by colour, did some basic adding and subtracting and ‘invented’ conversations between the different Trashies. It was wonderful to see them getting so involved and the sneaky maths homework proved a winner too! (hehehe).

Most days I curse those little trashes that are strewn all over my house and usually I cannot go into a single room without finding one of them on the floor but after this afternoon, I have started to see Trashies in a whole new light!

Granted it only lasted ten minutes before Harley started begging for the TV and Lucas for the computer but it was ten minutes longer than yesterday. And I hope to increase that play time over the next few months as I continue to find new and exciting ways to engage my children.

So for  now….I’m keeping some of the trash INSIDE the house.

* Hope is not her real name, but she is the same friend that provided my boys with these wonderful grubby little treasures…She has brought us much hope hence the pseudonym ♥.

Is technology ruining parent-teen relationships?

These days, technology and teenagers seem to go hand in hand. You rarely spot one who isn’t holding a screen of some sort or with ear buds in their ears. You know – the tell-tale white cord dangling down over their shoulders which is a dead giveaway to some sort of MP3 player or a phone underneath their jacket.

And my girl is no different. We rarely see her without those wretched ear plugs in and I have photographic evidence!

We resisted buying into all the electronics and gadgetry for as along as we could but eventually we ended up giving Ella a phone like all the other Mums and Dads did. She won’t be 13 for another 4 months but we decided that she could have it early.

Because even when you’re an adult in your 30s – peer pressure is a killer!

But of course I’m kidding!

Sort of.

A lot of parents of my generation and older moan about how society has forgotten how to communicate effectively and that websites such as Facebook or Twitter have killed off meaningful relationships and yes – I believe that’s true to an extent. But I also think that some of it is just refusal to admit that times are changing and that there is some good to be found when you lay aside personal reservations long enough to search for the good.

I understand the issue that a quick sentence typed online isn’t the same as going to a friend’s house for a coffee and catch up, but the reality is that life today moves so much faster than it ever has done before. So we’ve gotta bear that in mind when we look at how the younger generation operates. This is all they’ve ever known.

Back in the 90’s when I was growing up as a teen, I talked to my parents about everything. And I do mean everything. I was (and still am) a very open person. I pretty much lay it all on the line and what you see is what you get.  I don’t really have deep dark secrets – I just don’t do things that need to be hidden in the first place. That’s just me.

I love to communicate via words and my absolute favourite thing in the world to so is to have deep and meaningful conversations with those closest to me. I love to get to know new people and learn as much as I can about them because I have always found people absolutely fascinating! I have the gift of the gab and it’s really hard to shut me up once I get started. Talking is my thing.

So imagine my shock when I discovered that my daughter is the complete opposite to me and really doesn’t communicate a lot at all. (Bearing in mind that talking and communicating are two completely different things). I mean, put her with her school friends and they are a ball of chatter and silliness but you couldn’t extract a meaningful conversation out of her with a crow bar. She is simply not a communicator and doesn’t really offer up any indicators of her current mood, thought pattern or dreams and desires. She would make a fantastic poker player because she never gives anything away and most of the time I end up playing the stupid guessing game.

But I do know that she is a really great child and that she doesn’t do this because she has something to hide, but because she doesn’t know HOW to convey her innermost thoughts and struggles to anyone. I have secretly worried about her for quite a few years now because she is such a closed book, and in the past I have tried a few times to force information out of her with varying levels of success but lately, we have noticed a massive turnaround and I have technology and her school to thank for it.

Because a while ago, she came home with a note from the school saying that the rules had been reviewed and that mobile phones and iPods were now allowed to stay with the students during the school day (previously they had to be handed into the office).But the note stated that they were only to be used during lunch breaks. The kids were now allowed to indulge in the technology that has such a strong pull on them. It was progressive thinking and I think the school was very clever in their methods. They really get teenagers.

So Ella started taking along her iPod and loaded it up with apps like a French Dictionary, music apps and various other useful ones. Every afternoon she would come home and download hundreds of photos that her and her friends had taken during the day. Most of them were selfies or silliness but they were fun to look at and one afternoon as I flicked through the latest assortment, I thought: Wow….it would have been awesome if I had these kind of memories from my school days!

**

But for me, the real defining moment of my joy in modern technology was the day that I was mopping my kitchen floor and I my phone buzzed on the kitchen bench. I walked over and picked it up to check who had sent me a message and was surprised to see that it was my Ella.

She didn’t just text me to say a quick “Hello”. She was really communicating with me! We chatted for almost her entire lunch break about her friends, what she had done that day at school, her ideas for the weekend and she even opened up about other areas that are usually no-go zones when we’re talking face to face. And it didn’t stop there. My girl trusts me now. She really really TRUSTS me! She has confided in me several times since that very first text and I now look forward to hearing from my girl around 12 noon every other day.

She still climbs in the car each afternoon with barely a glance in my direction, she answers me with one-word answers and isn’t interested in sitting down and opening up her heart to me but that’s ok with me now because my girl has reached out to me!

She has found her medium, she feels safe when her fingers are doing the talking and I am discovering more and more about this beautiful young woman who is flourishing right before my very eyes even if it is in a non-conventional way.

I hold hopes of maybe one day that we can sit in a coffee shop together while I bounce my grandchild on my knee and she tells me all about what’s going on in her life but for now – I’ll take whatever she has to give me.

Oh heck yeah – I’ll take it! Bring it on!

This. Is. Our. Life.

I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.

So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.

They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.

They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.

I admire them so much for their dedication and resilience.

It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something - anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.

And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.

And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.

People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.

We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.

And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.

Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!

I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.

***

And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?

See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.

He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.

In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.

Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.

And a lot of families have a child with autism that presents in a similar way to Lucas.  There are a lot of kids just like him out there and that’s wonderful!

But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.

We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.

And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.

But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.

These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.

These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.

These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.

Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.

But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.

And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):

If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.

This. Is. Our. Reality.

If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.

  “Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.

The Shell.

After writing my last post lamenting the difficulties that school holidays present for me, I had a couple more days of harsh reality checks. The day after writing it, I looked out the front of our holiday units and noticed two sisters who were about 7 and 8 making up a dance together in the grassed area. They were giggling and having the time of their lives making their own fun and self-amusing. It reminded me of holidays when I was a child with my sister because we were just like that!

I smiled at them trying to block out my own children who were arguing and screaming behind me and following me around moaning and whining about being bored.

I admit that the kids did get better as the days progressed but my attitude didn’t. I was still sulky and feeling sorry for myself and counting the days until school returns.

Fast forward to yesterday….

I was sitting on an old log on the beach quietly sifting the fine sand through my fingers. The sky was overcast and so was my mood as I watched the children run, jump and play. I turn my head to the small voice beside me: “Can you see the rainbow Aunty Fiona”? I looked over at the shell that my 8-year-old niece was holding up before me and noticed that it was broken and dirty. She turned it over and the sun hit the pearlescent ( made that word up) inner side and the spectrum of colours shone through.

It was remarkable because I would have just discarded it thinking that it was no good. But she was seeing it through eyes that were still young and full of wonder.

I glanced over at my boys and noticed that Lucas had gathered a pile of driftwood under one arm and some sticks and twigs in the other. I stood up and followed him over to where Harley and his other cousin were standing picking up pieces of seaweed and sea sponge. He smiled at me and said: “Mum, there are so many cool things here, God makes BEST nature stuff!” as he carried on rummaging through what the tide had washed up.

The kids we’re all in their elements picking and choosing their own personal treasures. They each wore a face shining with amazement, enchantment and pure joy. The pleasure they derived from an activity as simple as beach scavenging was so humbling.

I thought back to earlier in the week where I was so cranky that I felt ready to adopt my kids out. I was angry that things were going so pear-shaped and hated how every holiday seems to start the exact same way. All I could see was how hard Harley’s meltdowns were on *me* EVEN THOUGH I knew that there was a very good reason for them occurring: (He was in an unusual setting with no solid routine or structure). And I couldn’t see through the many layers of the outer storm to why it was even happening at all.

I was looking at the dirty broken side of the shell and was unable to see the beauty behind the ugly cracked and broken exterior.

Until my eyes were opened by a child who is still able to view life through untainted lenses.

And I asked myself: Isn’t that why I blog? So that I can be the one to teach people to look for the inner beauty rather than focussing on the outer yuck.

What a wake up call!

What’s a holiday?

It happens every holidays. The excited mothers who are thrilled that their children are off school for a few weeks. They speak in anticipation of sleep-ins, lazy days, relaxing and recuperating combined with the grand plans of outings and day trips and possibly catching up with friends.

I listen to their exclamations of joy and feel like a real cad because if I were to be completely honest – I’d have to admit that I HATE school holidays with a passion.

And yes, hate is a strong word.

I hate that I have full days of fighting children instead of only a few hours in the evenings. I hate that my children whine and complain the entire time that they’re bored regardless of the activities I have provided them with, and I hate that more often than not, I end up housebound because taking them out causes too much stress for all of us.

I will admit that the first week of any holiday break is always the worst because it’s then that the boys are trying to make the transition from the routine and structure of school to the more relaxed easy-going (somewhat structureless) holidays.

The first week is also the time that I start to notice my own mental state shift. And this is largely because I am usually more on-edge and anxious as I try to foresee and predict meltdown triggers and step in and stop them before they occur. I am constantly aware that I need to stay one step ahead of them in everything and that the prospect of just ‘taking each day as it comes’ is something that I just don’t have the luxury of indulging in.

Holidays don’t have anything relaxing about them because they are always chaotic, stressful and loud.

Oh my goodness they’re loud!!

Having said all that, I missed the boat completely with Harley on Sunday with him having the worst meltdown I have EVER seen to date. Clearly I missed all of the warning signs.

***
At the moment, the children, Mum and I are staying in a holiday house on the NSW central coast and on Sunday, we decided to walk up to the shopping strip nearby and get some essentials because it would be quicker than finding a car park. But for some reason, Harley thought that we would be driving up and threw a fit when he discovered that we were walking.

He stomped along behind us dragging his feet on the footpath and screaming at intervals that it ‘wasn’t fair’, that he was ‘tired’ and that he wanted to go home. We ignored him and continued walking refusing to let him ruin our plans because we felt that we weren’t expecting too much from him.

We reached the end of the street and Harley calmed down enough to cross the road and we thought we’d be ok after that so we took our chances and went into a nearby cofee shop to grab a quick coffee before shopping. Harley just reacted by sulking and being generally cantankerous.

As we drank our coffee, he continued to growl at us and threw his food straight at Mum so I told him that his behaviour was disgusting and that we weren’t going to put up with it. He was told to change his attitude or there would be no beach that afternoon. After we finished our coffee, we headed toward the supermarket and that was the exact moment when Harley turned it up a notch. In a matter of minutes, we were thrust into the middle of a full-blown mammoth sized meltdown and there was no escape.

He screamed his lungs out and threw himself down on the footpath with arms and legs flailing furiously. People stopped and stared and when I tried to pick him up but he may as well have had concrete in his boots because he was literally anchored to the ground and I couldn’t budge him.

I tried to talk to him but he just screamed louder. I tried a second time to pick him up and I did manage to carry him for a few steps, but I was kicked and punched so hard that I had to put him down again and I waved the white flag of surrender. So instead, I sat on the edge of a shop window and pulled him between my legs with my arms wrapped tightly around him whilst saying: “Shh, it’s ok, it’s ok, Mummy’s here” while stroking his head as he kicked and thrashed.

At the time, I truly believed that what we were witnessing was a tantrum rather than a meltdown, but the proud part of me didn’t want to look like a bad mother to passers by so I took the ‘calming a meltdown’ approach instead. I did this because I realised that his fit looked like something a 2 year old toddler would throw not something you’d expect from a 9 1/2 year old child. And when Harley gets angry – he becomes super-humanly strong and when he’s not coping…even more so.

Mum was unable to move him either so we had no choice but to send Ella to the supermarket to get a trolley and bring it to us. Together we lifted Harley by the arms and legs and placed him in the trolley while he continued to jump and scream and thrash violently ducking the punches as they flew at our heads.

I walked around the supermarket grabbing only the absolutely essential items so we could get out quickly, while Mum waited with him in the trolley at the front of the store. He was so loud that he could be heard no matter what aisle I had walked down because he was screaming at full volume. I put my head down and refused to look at anyone. I was embarrassed, angry and exhausted.

About ten minutes later, I noticed that the screaming had subsided and headed back towards the checkouts and saw Mum talking to another woman who Mum later told me had recognized that it was autism.

In fact, Mum told me that FIVE different people had also approached her saying that they understood because they had a child/grandchild/relative who also lived with exactly what they were witnessing in Harley and that they understood our exhaustion and mental drain.

No judgment, no unsolicited advice..just pure understanding and support.

She (and I) were absolutely blown away!

***
It’s now been a few days since that episode and I’ve had time to reflect and chat with Harley because I really wanted to get to the bottom of this and discover what actually went wrong. I simply don’t ever want another episode like this. Talking to him was surprising and very eye-opening.

And this is where I find the autistic mind both fascinating and frustrating. This whole event came down to a simple misunderstanding and a hiccup between what we communicated to Harley and what he understood.

Firstly, he had already prepared himself for a car ride which didn’t eventuate, then we added in a quick coffee stop and thirdly, he didn’t have a film strip in his head of what the shops looked like because he hadn’t been there before. Most children are equipped with the emotional maturity to cope with change and adapt to new situations with ease. But Harley – feeling out of his depth , completely freaked out.

But don’t get me wrong here, I don’t excuse his shocking behaviour at all.

Throwing food back at Mum, stomping, screaming and the physical abuse are all extremely inappropriate. But all that I can think to say right now in my resigned, tired voice is : ‘Welcome to our autism’ .

I am struggling to teach this child anger management and self control and how to cope in different situations because I’m just too exhausted anymore. I am counting the days until his next psychologist appointment because I’ve been dealing with this for far too long now.

I wish I could enjoy having my children home without spending most of the time in tears. I want to love the school holidays as much as everyone else. But I don’t.

Not even close.

Turning hate mail into love letters.

Today was the last day of term three for my children and they now have a 2 week holiday, so I wanted to surprise them by making a delicious afternoon tea to celebrate. I baked a beautiful cake and some biscuits and carefully peeled and cut some fruit into bite-sized pieces. I laid it all out on the outdoor table so that they could enjoy a picnic afternoon tea. They were thrilled….Or so I thought.

I went back inside to stir tonight’s dinner in the slow cooker and then my phone rung so I went to answer it. Mid way through my conversation I heard a large crashing sound so I looked out the window in alarm and was far from impressed with what I’d just seen. I immediately excused myself from the call and slammed the phone down in anger.

I flung open the screen door and marched over to the front fence to see both of the boys standing on the wheelie bins with the remains of afternoon tea on the ground around them. I stood on my toes and looked over the fence to discover that they had thrown every last piece of the food I’d lovingly prepared over the fence including my plates and glasses.

Oh…and that crash? It was a HOUSEBRICK that they threw onto the driveway that broke into little pieces and smashed our pavers. Thank God that none of the neighbourhood kids got hit in the head! I was livid but surprisingly calm.

I grabbed both of the boys by their collars and marched them out the front and watched until they picked up every last piece. As a consequence, all of their computer and Wii privileges were revoked and I then made them go back inside to shower and get ready to go to bed. It was only 4:30pm.

Harley screamed at me, kicked the door and clenched his fists in anger while Lucas threw himself down on the ground and sobbed.

Loudly.

I tried my best to ignore them until I could get the motivation to force them into the bathroom to shower. But Harley stomped past me and grabbed a piece of paper off the computer desk. He then grabbed a pen and started drawing a picture. He dug the pen firmly into the paper, scratching the table as he did so. He glared at me and told me to get out of his way as he stormed up to his bedroom to tape his “sign” to his door.

His ‘sign’ was a picture of a woman and a boy with a speech bubble coming from the boy’s mouth. He was telling the woman that he hated her and the words:  ‘Mums arnt alod in my rom evr’ were at the top of the page.

A hallmark card I was given.

I glanced at it briefly and then walked out to give him time to calm down. I returned about twenty minutes later and sat on the edge of his bed and told him that I was very sad.

“Well you should be!” he replied angrily. “You are such a mean mother and I don’t want to live with you anymore”. I willed my face to not show my own anger and hurt and replied in a steady tone: “Ok you might think that, but I love you even when you’re being horrible and angry”.

 He rolled his eyes and mumbled something indiscernible. I stood up and walked over to his door and took the picture down then sat back down without saying a single word. Then I looked at him and then back down at the picture and then back at him a second time.

He grimaced and then put his head under his pillow and I knew then that I had him exactly where I wanted him. He was experiencing remorse. And this is a HUGE step in the right direction for him. Once I’d seen the slight flicker of emotion in his eyes, I started to speak.

“This is a great drawing”.  I said and he peeked one eye out from underneath the pillow.

“I can see that you have drawn a woman and a little boy. Is that you and me?” I continued.

The pillow moved a bit more.

 “But I can’t understand something about the little boy. He looks mad…really mad but I don’t know why?  I paused for a minute.

“Do you know why he might be mad?” I asked.

Harley sat up and looked over at me with a shrug of his shoulders but still refused to talk. “Well, I guess I’ll never know then”.  I continued with a shrug of my own shoulders. “But I know why that Mum is sad” I said. He looked up at my face so I continued.

“She is sad because her little boys threw away all the lovely food that she made for them. And they threw bricks over the fence and were being very naughty. And she’s sad because her little boy yelled at her and told her that he hated her and got very angry”.

I looked over at him and he had his head down. “I wonder what the little boy should have done when he realised that he was angry? Maybe he should have taken a deep breath and counted to ten. Or maybe he should have gone for a walk around the house until he calmed down. Do you think he should have said those mean things to his Mummy?”

 He shook his head slowly.

“So what do you think that the little boy should say to his Mummy now?”

 He put his head down again. “He should say sorry to her”.

 “Yes”  I answered. That would be a great idea.

“The little boy is sorry”. He whispered back and leaned over and hugged me.

“And that Mummy is very proud of her son for apologizing”. I answered.

I gave him another hug and walked out of his room. He came running up behind me and ran straight past me to the kitchen to grab another pen. He sat down at the table with his drawing and started to alter it. He added a picture of Paul, Ella and Lucas and scribbled over the speech bubble.

The sign now reads: ‘Mum and Dad and Lucas and Ella ar al alod in my room evr’.

And then he handed me another scribbled note. This one said simply: “I love u mum, yor the best mum evr.”

***
So why am I excited by this enough to write a blog post about it? Because this is some major progress right there! Children on the autistic spectrum have difficulties in understanding and expressing their emotions.

Most of the time with Harley we only see happiness or anger and nothing in between but by talking with him in this way, I allowed him to discover why losing his temper was wrong without coming down heavily on him.  I deliberately didn’t overwhelm him with words or yell at him (even though I was furious) because I knew he’s go into shut down if I did.

By using the little boy and the lady that he’d drawn as characters in my story, I was able to acknowledge that there were emotions that needed to be dealt with without him feeling that I was attacking him personally. I was able to address the whole situation from a less threatening angle and help him to discover a better way to react in situations that anger him all by himself.

And he learned another valuable lesson today. Consequences.

He went to bed tonight chanting to himself: ‘If I am naughty, I don’t get to do things that I like’ as if he was trying to memorise it for further use.

So yeah…..we are certainly covering a lot of exciting ground here!

Next post: Learning about consequences.