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

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.

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!

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

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

These are the friends who instinctively know when I’m off my game and don’t let me fade away because they know its not good for me. They know that when I withdraw it’s an alarm signal.

You know……

• The email that states that I’m not required to respond but that they want me to know that I’m being thought of and prayed for.
• The text messages that are innocent enough but have a deeper underlying purpose….digging for details on how to help me. Or even asking a mutual friend to contact me to check that I really am ok.
• The phone call out of the blue just to say “Hi” .

And then there was today. Today a friend took me out for lunch. And the fact that I can boldly say that it was the best gluten-free meal I have ever eaten to date is not the most meaningful thing that I took away from our little rendezvous. The wonderful quaint little gift shops that we browsed in wasn’t it either. And believe it or not: it wasn’t even the amazing coffee we had. No. It was “where” she took me. She knows me and what I love the most.

Remember in previous posts where I have written that sometimes I need to escape to the country to find my balance again? That there are days when I just need to get away from the stress and hectic pace of my life and clear my head?

Well….she took me there. To my favourite little country getaway with the beautiful people and the incredible landscapes and cute little churches.

She’s clever isn’t she?!

But I didn’t work out her plan right away.

Sure she mentioned that she’d noticed that I sent her a picture last night instead of writing but I didn’t think too much of it at the time.

I savoured my lunch. Well no, actually – that’s a complete lie – I wolfed down my sourdough chicken burger like there was no tomorrow! But what I mean is: I was content in my surroundings and relaxed and happy, I was laughing, chatting and absolutely in my element. And I haven’t been in that place of contentment for quite a while now.

My friend asked me if I could picture myself sitting outside on the verandah with a coffee listening to the bell birds with my iPad in front of me writing. And even then, I still didn’t realise what she was doing. I’m not even sure if it was deliberate or not but it worked.

I turned a corner. I was able to quash the feelings of inadequacy and standup to that voice in my head telling me that I’m a waste of space and mentally yell back at it: “What I think and write and who I am is important so SHUT UP!”

Giggle ….giggle….I like feisty Fiona …

My friends know that writing is what works for me. It’s how I process my thoughts and work through emotions. But lately I have shunned writing. It has all been too hard and I really wasn’t keen on facing any of my challenges head on.

I kept my head stuck firmly in the sand refusing to face up to anything.

There has been a lot of stress here lately and the fact that our house is currently on the market hasn’t helped. We have had a low offer which we refused and another offer of the exact amount we were hoping for only to have the buyer change their mind and withdraw their offer 2 days later. At this point it looks like we’re staying put and I’m more than happy with that right now.

Also: it is the last week of school next week and the exhaustion and frustration is evident in all of the children but especially Harley. He is tired. He has mentally signed off for the year and is coping by tuning out everyone and everything. (Hmmmm. wonder where he got that from?) hehehe

There have been challenges in our marriage and struggles in our family dynamic and its all gotten on top of me.

But my friends haven’t deserted me. Even though I know I’ve been difficult and aloof lately, the emails and texts have been constant and kind and caring. I have needed them . They are truly what have kept me going.

That and the reminders of where I need to get my strength. I admit that lately I have stopped laying all my cares at the feet of Jesus. I have tried to do it in my own strength and failed miserably. But just like my friends here on earth He hasn’t forgotten or forsaken me. And for that, I am truly thankful.

I have learned that unlike my husband and sometimes my boys; I need people. I need to chat, to hug, to be hugged and to do life alongside others who get me. Some people do well by limiting their interactions but I’m not one of them. I crave human contact and start to nosedive whenever I choose to isolate myself.

And tomorrow night: I hope to write more about the past few months and the awesome progress that my boys have made.

The clouds are clearing: the sun is peeking through and the curtain of lethargy and depression is lifting.

And even though I was raised in a Pentecostal church – I am still partial to the odd old hymn. Like this one because it just sums it all up perfectly.

It is well with my soul.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.

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.

The dusty green box…

My treasures lie within.

Tonight’s post was meant to be my contribution to Wordless Wednesday, but as I was photographing my subjects – I realised that there was no way that I could post these pics without writing why they mean so much to me. So it’s going to be anything BUT wordless

~

Well: A few years ago we were given a pair of beautiful Tiffany champagne flutes as a Christmas gift. They were delicate and dainty and I felt like a princess when I reclined on our plush leather lounger (the only piece of decent furniture we own) whilst sipping some cheap $30 bubbly. But unfortunately, as dainty as these glasses were, they were no match for my clumsiness.

I shattered both of them within days of each other and within weeks of receiving them. I was very upset and it took me quite a while to forgive myself but eventually, I got over it.

But I have kept the box they came in – because I do stuff like that

I keep pretty boxes so that I can store other things in them. It bugs the hell out of my neat-freak minimalist husband but he’s learnt to let me have this one.

See…he’s smart like that!

And I mean come ON…It’s a Tiffany box! That’s waaaay more posh than the usual stuff that gets tossed around here!  So the pretty green box went up on my bookcase awaiting the treasures that would one day fill it.

I once had some perfumed body lotions in it but found it a pain to have to keep taking off the lid every time that I wanted to use them so that failed. And I also tried filling it with my bangles and costume jewellery but I abandoned that for the exact same reason.

Then there was the short-lived phase where I stored our camera and computer cables in it but I kept forgetting where I’d put them! So I gave up and it remained empty for a good 12 months after that.

This box has never meant a lot to me on it’s own because it truly is just cardboard. And I’ve never been particularly attached to it after the contents were removed, but I placed some value on it because it once held something beautiful and it reminded me of that.

And then one day, I received another card in the mail from my best friend (as I do most weeks) and suddenly a light bulb went on in my head!  I knew what I had to do with that box, It all became crystal clear. I needed to fill my special box with something even more special.

My best friend knows how I tick. She knows what I need and goes out of her way to give it to me: I need words.

I need spoken and written encouragement and I need validation. All people need those things but it’s what really makes me feel special.  So she’s been sending me a card every week for the past ..um….well….let’s see…..hmmm…I stopped counting the weeks after 145 so I guess that’s almost 3 years!

And as I was typing this up, my husband arrived home with today’s mail and there was another card for me! Squeeeee!

This is today’s card

Does my Butt look good in this?

And you know what?

I have kept every.single.one of them. Every card she has chosen with love. Every card has been hand selected JUST FOR ME and every one of them holds a special place in my heart.

There are hilarious cards, serious cards, thoughtful cards and a LOT referring to my caffeine habit and now, the green box is almost full to the brim. She has arranged to have them sent to me when she’s been overseas, gets them sent to my Mum’s house when I’m there and has even had her sister hand deliver some to me whenever she’s been down visiting.

That’s over 145 times she has thought of me.

And there have been many days, afternoons and nights when I have been sad or lonely or missing home and I lean over the edge of my bed and pull out the little green Tiffany box. I blow off the dust, sweep away the cobwebs (it’s filthy under my bed) and open it so I can look at, touch and completely immerse myself in my earthly treasures. God gave me such a blessing in this friend. She loves me as Jesus loves me: Unconditionally.

A treasure that runs rings around two silly champagne flutes!

Matthew 6:19-21

¹⁹ “Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. ²⁰ But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. ²¹ For where your treasure is, there your heart will be also.

Love + sacrifice = progress

Not a proper post tonight….I’m just writing out some of my random thoughts… you know, working through some stuff that has been rattling through my brain of late

There is a saying that when a child is diagnosed with autism – the whole family is diagnosed with autism. And it has to be that way because every single member is affected in some way whether directly or indirectly.

It’s taken me the whole 5 years since we received Harley’s diagnosis to fully accept that things will never be the same as they were pre-diagnosis ever again. And for me – it’s was a very slow journey to reaching acceptance because – I’ll admit, that it’s a daily struggle for me to have to adjust my expectations and ideals.

The selfish part of me that creeps up occasionally wants to do things the way I’ve always done them.

See – I’m stubborn like that.

There are still many times that I have to stop and remind myself that we are an autism family and that what works for most families simply wont work for us. And then I have to make the necessary allowances to make it work, or deal with the inevitable consequences.

All mothers have to become selfless and put their child’s needs above that of their own in order to be an effective parent, but when you are raising children on the autistic spectrum – it’s even more important because their needs and daily requirements far exceed regular kid stuff.

I was told recently by a health professional that I’m going to have to eventually recognise that I don’t have a family that will fit into what society deems to be normal and that outings will often present challenges and sometimes I have to make the choice to either stay at home or leave ‘him’ at home thus separating the family. I need to choose which battles to major on and which ones to let slide.

Or, I could take the third option which is taking Harley out with us and being prepared that he may lose it or we may have to end up leaving early.

She said that this is just the way it is and that although things will get easier the more often that we do them – it’s always going to be something that we will have to work very hard at. And she emphasized the ‘always‘.

I sulked for a good week after I was told this. I knew it already in my heart but I let my emotions get the better of me.

Everything in me was crying out: “NO….it doesn’t have to be that way”…

But you know what? It actually does.

I’m getting a lot better at this as the months pass by and I can now admit that as a family, we are different and we have to do things differently. And I can even admit that even though it’s a huge inconvenience to me to have to make different choices – the truth is – my son means more to me than any preconceived ideas that I may have about what I really want out of life.

And that’s what growing up is all about… leaving behind what you think you want, so that you can make way for what’s more important and what is necessary in life. You make the big sacrifices because you love.

It’s that simple.

1 Corinthians 13:7
…love always protects, always trusts, always hopes, always perseveres…

Always Remembered…

I am too tired tonight to write the post that’s churning through my too-full brain so I’m going to re-blog this one from last year instead.

I have found Father’s Day this year to be difficult and sad. I thought it might get easier as the years pass, but so far – this hasn’t been the case. We lost my wonderful Dad to cancer four years ago and the world lost a wonderful husband, brother and friend. Father’s day will continue to go on regardless and if I have anything to do with it: so will my Dad’s memory.

I am encouraging my children to give Paul a wonderful day today and thinking about how much I can’t wait to get to heaven to have a cuppa with my Dad!

Happy Father’s day to all my wonderful readers. Hope it’s been fabulous.

 

Me about 12 months old with my Daddy x

A Daddy gives his daughter away

Young Love......My Daddy and Mummy engaged.

Miss you Dad…..xxxxx

A Mothers Love: Poem for my son.

The school bell rang and children rushed,

Toward their classroom doors,

I saw you pull your hat down firm,

And brace yourself – then pause.

.

And as you walked inside your room, 

I noticed you inhale,

Your hands you pulled into your sleeves,

Your face began to pale.

.

I saw you mutter to yourself,

And count your steps until, 

You noticed I was watching you,

Then stopped and stood dead still.

.

I think you’re brave , you push yourself,

Out of your comfort zone,

I see this and it makes me proud,

I know you’d rather stay home.

.

You think that you have got me fooled,

And that I’ve got no clue,

But I’m your Mum – I see your pain,

In most things that you do.

.

I know that when you pace and count,

You’re trying to pro-cess,

And when your brow is screwed up tight,

It means you’re getting stressed.

.

You sometimes find it hard to speak,

And tell me how you feel,

When you get home from school each day,

For you that pain is real!

.

I’ve come to learn that you express,

Emotions differently,

As either happiness or rage,

And nothing in between.

.

I need to show you other ways,

To let your feelings out,

There are better ways to show me these,

You needn’t scream and shout.

.

Just know son that no matter what,

I’ll love you with my all,

I’m here to guide you through these years,

And catch you if you fall.

No illness here.

I may be going out on a very thin limb in writing this post but I feel very strongly about this particular subject and the advocate in me isn’t prepared to sit down and shut up this time. It was conveyed to me recently that my children need healing and I prickled at this suggestion. More than I expected to.

I have come to realise that being both an autism parent AND a Christian who believes in healing can be a very contentious mix at times. And it’s probably not for the reasons that you think.

I believe in a powerful God who can do the impossible: but here’s what I DON’T believe: I don’t believe that autism is a sickness that requires healing.
And let me say up front that I am not nor will I ever be seeking out healing for my boys from their respective autism. They are not sick or ill or diseased, they are simply different.

But unfortunately, not everyone shares this view.

The word ‘advocate’ means to speak, plead or argue in favour of a cause that you believe in. And anyone who reads this blog would have noticed that I very much believe in my children and their potential and am not backwards in coming forward when it comes to creating awareness for autism.

See, here’s the thing. When I’m told that my child needs healing: I’m basically being told that there is something wrong with my child. I’m being told that they are not acceptable the way that God made them and that they are faulty, defective and sick. They are not being accepted for who they are.

You don’t pray for the well to be healed so why pray for healing from autism for my boys?

If they have a cold, a broken limb or a fever by all means intercede in prayer for them, but please don’t insult them and me by praying away the very essence of who they are.

Sure – I hate the anxiety, the fears, the hurt and the anguish that their differences may sometimes cause them, but I certainly don’t hate who they are. And I believe that discovering the difference between the two is paramount in understanding what autism awareness is all about.

I dislike that ordinary daily tasks are a challenge for my boys, I dislike that they struggle to just ‘be’ in many situations and I dislike that they are becoming more and more aware of their differences. But I don’t want them to feel that they need to conform to society in order to be accepted. I want society to change how they view those beautiful members of our community who just happen to have an autism spectrum disorder.

And I don’t see my children as broken, sick or in need of “healing”. I see them as Wonderfully Wired. I see them as having been created to be remarkable. Hence the name of this blog.

Asthma is an illness. Depression is a mental illness. Influenza, heart disease and cancer are all illnesses.

Autism is not. It does not need a cure or prevention. It needs love, acceptance, and people who are willing to look past the diagnosis to the heart of the person.

Look at these photos: Do these babies look “sick” to you?

No…..they are precious, they are wanted and they are loved.

I knew from the minute that I held them for the very first time as newborns that they have amazing futures and nothing is going to stop them from living their best lives.

Hope you’ve all had wonderful weekends.

Fi x

Split Personalities

It was raining, it was chilly and it was dark out. It was almost 7pm and we were absolutely starving, but all the restaurants in the little town we were staying in were closed on Wednesday nights. We had no means of cooking our own meal in our little villa and we had considered driving to the next town.

But then we found a strange little place that was clearly having an identity crisis. This place served both Thai and Mexican food which was the strangest combination we had ever heard of together. The two completely different cuisines made no sense together whatsoever.

Amused, we walked in and the cowbell chimes on the door should have been our first clue to run far away and never look back. Well, that and the fact that there was only 1 other couple eating there. But we were hungry and desperate.

We sat down and the (what looked like) 12 yr old waitress took our order. We giggled as we looked around the room and noticed the Thai silk scarves hanging on windows with bejeweled sombreros hung haphazardly next to them.

And the hessian wall hanging of a cactus below a shelf proudly displaying a Buddha statue.

Bamboo makeshift blinds with the Mexican flag painted on it covered a bay window that housed a shrine of Thai goddesses and paraphernalia.

Everywhere you looked there were oddly juxtaposed items on display all brightly lit up with coloured fairy lights draped over every other possible surface.

Tacky doesn’t even come close to describing it but somehow somehow it worked.

We decided that it should be renamed the “Split Personality” restaurant.

I often feel as though I have split personalities myself. I have my mother personality, my wife personality and my Fiona one.
They are all coming from the same inner well but they are all incredibly different. Of course they all overlap at some points and they’re all part of who I am but I still haven’t figured out how to make them all work as one. I haven’t worked out which one should take precedence because the mother one always seems to overtake the rest.

And having this week away from the children and the demands of my everyday life has illuminated some things about me that I have been burying and refusing to deal with for a very long time.

Paul and I spent a lot of time apart during our week “together”. And that may seem strange to some people but we both recognised that we needed it as much as we needed our couple time. We know that we are unlike other couples and that we can’t do the whole 24/7 thing that others can. It doesn’t work for us.

And I really needed to be alone.

I needed to not be needed. It’s as simple as that.

Sometimes I feel like Paul and the children are each pulling one of my arms or legs like a rag doll that is being pulled in four different directions and instead of working through this I find myself withdrawing and becoming more and more resentful toward all of them. My mother and wife personalities have left no room for my Fiona one to shine.

I’ve had a lot of anger rise up this week that I hadn’t expected to see. Things I thought I’d dealt with popped up and threatened to drown me. I prayed about it and God showed me a few home truths about myself that were tough to see but necessary to confront.

This week, I’ve picked fights with Paul unnecessarily because I placed high expectations on him and got angry when he didn’t react the way I wanted him to. I’ve accused him of not loving me and sulked and cried my way through.

He hasn’t argued back with me once to his credit and has stayed firm and strong.

Last night, it was our last night away and I sat down in front of the fire in our cozy little villa in my husband’s arms and cried and cried. I told myself that I was hurting because of something someone had said to me that I felt was borderline nasty, but I knew that it was more than that. I knew deep down that it was because of guilt.

Because the incredibly selfish part of me didn’t really want to go back to my life the next day. I didn’t want to be the Mum anymore. I cried because Paul desperately missed the kid’s and I didn’t. I mean-what kind of mother says that? What kind of mother doesn’t pine for her kids when she’s been separated from them for a whole week?

And Paul answered me: A mentally, physically and emotionally drained one.

He reassured me that it’s not the children that I’m not missing but more the dramas, the upsets, the hard work and the constant noise that I don’t miss instead.
And he’s absolutely right.

I am writing this in the car on the iPad and right now we are 3 hours in on our 7 hour drive and I’m already feeling the excitement stir at seeing my treasures again.
Paul is Right!….He is sensible, methodical, precise and firm – all the things I’m not.

And just like that kooky little restaurant ….we may be a strange mix who look weird to everyone else, but somehow somehow we work.

And for that I am thankful.

Do you see what I see?

There are a whole entire series of events that have contributed to my ‘inspiration’ for this post but I won’t go into any major detail on here. This blog was never intended to be a platform for nasty rants and I don’t believe that belittling people or starting an all-out war online is conducive to encouraging harmony and peace to flow in our lives.

But in a nutshell - there are some people in our personal lives that have said and done some pretty awful things to us lately. People who are still of the belief that it is bad parenting that is to blame for the difficulties that we face and not due to the tumultuous journey that autism takes you on every day.

This out of line nastiness has been directed at all of our kids and us as parents too, but particularly Harley who has been quite hurt in the process.

The abuse of power came mostly from someone he should be able to trust and we have had to learn the hard way that not everyone sees what we see when we look at our beautiful children.

And here’s the thing: When one of my kids hurts…I hurt……and then the  Mama Bear inside of me that’s usually quite well-tamed,  gets stirred up and becomes more and more aggressive and wants to pounce.

Get the drift?

Good.

When I look at my boys – I see that they are incredibly misunderstood. I see that they often don’t fit into the world’s ideals of acceptable and it makes me mad that I constantly have to fight for their rights.Their basic right to be counted and accepted for who they are NOT for what these people want them to conform to.

~

 On the weekend, we had Mr Patient’s work Christmas party. It was held at a very ritzy hotel – the same one that President Obama stayed at when he was in Sydney and we got to dress up and be grown-ups for a whole entire night!

We checked into our room on Saturday afternoon and gazed out our window overlooking the heart of the city and I was completely blown away. Totally awe-struck and filled with excitement – just like a child on Christmas morning. It was worlds away from the day-to-day life that I am used to and it felt SO right for me to be there.

After we’d checked in we went for a short stroll down to the iconic Sydney Opera House (which was just around the corner) and we took our photographs in front of the beautiful Sydney Harbour Bridge in the distance. I had reservations about leaving my boys to go away that night, but had allowed my husband to convince me that I deserved this break.

After a coffee and a quick catch up with some friends at a café on the Harbour we headed back to the room to get ready for the fancy dinner that was due to begin only a couple of hours later.

I’m really not sure exactly when my world started to crumble that night, but I have a suspicion that it was around the time that we were ushered over to talk to one of the big wigs from Mr Patient’s office over drinks about half an hour before the dinner even began.

This man was the centre of attention in our small group as he boasted about his daughter’s grades at school and how “HE” had been instrumental in pushing her to get them. He spoke of the (ridiculous) incentives that he had put in place and waxed lyrical about the promising futures that his children had in front of them because they had learned the importance of good grades and hard work.

He said that he wasn’t happy with Bs or Cs and that without As…..he knew his children had no future in life.

And that was about the time that I started biting my tongue.

And I was biting it HARD!

I suspect that the wives are expected to just suck it up, smile and look pretty at these fancy events, but as the conversation with this man continued, I felt Mr Patient’s grip on my leg tighten with every word that this boastful horrid man spewed venomously from his mouth…

My husband knew that I was brewing up a filthy storm inside of me and that it was only a matter of time before I exploded. He knew that Mr Mouth had hit a raw nerve in me and that I was not a happy camper.

But I had enough sense to not put my husband’s job in jeopardy and chose my words very carefully and spoke respectfully as I looked this man square in the eye and asked him:

“So, What about the children that don’t manage to get As but still give 100% effort in all that they do. Do you think that they won’t succeed in life? Is their future doomed?”

And he replied: “Yes. I believe they are, grades are everything. There is no room for success without being a high achiever and it all starts at primary school”.

So then I asked him: “But what about children like my son who gives their all but the school system doesn’t cater to the way that they learn?”

“Then they need to try harder” he replied. “It’s as simple as that”.

I gritted my teeth and forced out a smile because I knew that it was neither the time nor the place to make a scene but I was unable to just shake this one-off.

And I have spent a lot of time today rolling the events of this weekend over and over in my head and I have come to the conclusion that it all boils down to something as simple as perspective.

Because: perspective is what shapes the way that we form opinions on pretty much everything in life. And perspective is what allows us to choose what’s really important to us and to show us what’s not and gives us the tools to decide how we are going to react in any given situation that presents itself to us.

You see….not too many years ago – I suppose that I too saw things completely differently to how I do now. And God has shown me that these people in our life who are causing grief right now and this man at the dinner aren’t viewing our life through the same lenses that we are. Their perspective is entirely different to ours. Their focuses are on other things and it’s easy for them to shun that which they aren’t confronted with on a daily basis.

They have the luxury of choosing to be and stay ignorant about autism and it’s many challenges and they don’t have to make the same allowances or battle the same demons that we do.

They are walking an entirely different path and have made the choice to judge and form uneducated opinions on that which they don’t care to try to understand.

But none of this is our fault.

This is all because these people don’t SEE what we SEE!

They see non-compliance and disobedience but not hurting, confused children.

They can’t see past frustrated temper fits to discover the beautiful little boys with can-do attitudes and more love than they can possibly contain.

They are focused on the struggles, the “different” and what they consider to be wrong about our kids because they don’t have our untainted and glorious perspective.

And I thank God for the grace that He’s given us to raise these kids. I thank Him that He has opened our hearts to receive more than we ever expected possible. We rejoice in achievements that other parents take for granted.

For us – the little things are often BIG things and we consider ourselves to be incredibly blessed, but I am learning that the downside to having a softened heart is that we are also easily bruised.

But bruised is most definitely not broken!

And we are constantly surrounded by other beautiful people who DO see what we see and share the same unique perspective.

And for all of you – I am extremely thankful.

Have a great week

Fi x

Refreshed, Renewed and Revitalised.

Sometimes, I feel like writing all my kid’s therapies and interventions down on separate post-it notes and sticking them randomly around the walls. Maybe then I could whack a blindfold on my face, have a friend spin me around 3 times while I point my finger out in front of me and wherever I end up pointing is how I decide which therapy has got to go.

I mean, seriously, how do you choose what to keep and what to let go? There are the factors of time, money and effectiveness not to mention deciding which ones are the most important for producing the best long-term outcome. Heck…they ALL are but there are only so many hours in the day!

~

So, anyway, here’s me thinking that Lucas was doing ok since he finished with his speech therapist a few months ago and I was seriously considering not even finding another one because he seemed to be doing ‘fine’. Well, yeah he is but it depends what you’re comparing it to.

If I was to compare it to how he was this time last year or even 2 years ago – of course he has improved, but if I were to compare it to say: my friend’s 2 year old who spoke to her in fluent clear sentences this morning-well… not so much.

This morning really showed me the depth of the chasm between reality and my rose-coloured version. Because, I understood every.single.word that my friend’s child spoke yet I still have to play interpreter for my 5-yr-old almost every day. That really kinda sucks but I’m mostly ok with that.

This time of the year is crazy in most households with the end of the calendar year and in Australia – the school year as well.

You can see it on the faces of the children everywhere. They’ve all had enough and are ready for a break. All of us parents are no different but I have reached the point this week where I am throwing in the towel and climbing onto my soapbox and shouting “ENOUGH ALREADY!!!!”

I’m over it.

O-V-E-R!

Over school, over therapies, over interventions and completely over the sometimes suffocating wet blanket that is autism.

As I drove away from dropping Lucas at pre-school this morning, I thought I had a post half-written in my head. I thought I was going to be writing about humour today (or lack thereof) but it turns out that things were going to go a little differently to what I had planned. I turned on to the freeway and started singing along at the top of my lungs to Michael Bublé.

Oh my Lord I love that guy. Mr Patient knows that he would instantly take a backseat if I were ever to meet the smooth Canadian dreamboat! LOL

I have this song:

 

as my ring tone and I’ve convinced myself that he wrote it for me

But…I digress…..

I was singing along with Mr Bublé and saw my exit coming up and decided that the housework would wait for me and so would the 101 things on my to-do list for today so I decided to keep driving.

I drove for about an hour and pulled over to the side of the road and parked the car and climbed out. I was in the country and I was feeling fabulous. The fresh air, the smell of nature and the sounds of chirping birds.

Awesome!

I was born on a farm, raised for the first 12 years of my life in a small town and moved to a slightly larger town for high school and KNOW that the country is where I feel the most peaceful in my life. It’s like the old saying….You can take the girl out of the country….

I have lived in large cities for almost 20 years now but I will always be a country girl at heart. And until this morning, I didn’t realise just how badly I really needed to get back to my peaceful place today.

I needed to escape the daily pressures of my busy life and I needed to be all by myself. I grabbed a bottle of water from my console, my sunglasses and my hat and went for a long walk in totally inappropriate footwear!

I found a big old gum tree in an isolated park and lay down under it and closed my eyes.  I was able to relax for what seemed like the first time in an eternity.

No pressures, no deadlines, no therapies and no interventions.

Just me, God and the amazing landscape that he created.

I dozed for a while and glanced at my watch, I was getting hungry so decided to drive to the next little township. I grabbed some fruit and more water and strolled through a little antique shop having the time of my life. After about half an hour I glanced at my watch again and knew that it was almost time to head back.

I kicked myself for not bringing a camera but remembered that I had my iPhone so I went and grabbed it to capture some of the breathtaking scenery all around me.

As I drove back towards home, I passed a little church. A beautiful picturesque little church and when I saw the words above the archway, I knew I had to stop and take a photo. It summed up exactly how I felt today.

Thankful.

Today didn’t cost me anything but a little petrol and time and what I gained from this experience was priceless.

I had 4 hours where nothing mattered, nobody wanted a piece of me and I was a free agent.

JUST what the Doctor ordered. I can now face the weekend and everything that comes my way totally refreshed, renewed and revitalised.

I highly recommend it.

Have a great weekend everybody xx

*

**My apologies to all you wonderful readers who have taken the time to leave me comments and I haven’t responded to you. And also to those whose blogs I haven’t gotten around to reading yet – I intend to remedy both of these issues  ASAP

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

WORDS.

image from: jonsibal.deviantart.com

I truly am a great big fan of words.

Really! I love them. I don’t always have the right ones when I need them and I often use the wrong ones instead but still…I really really like words!

It’s not uncommon for me to put my foot in my mouth because I haven’t yet perfected the art of connecting my brain to my mouth – sometimes excitement just takes over but still, I love words. And I’ve often been accused of using too many words and also of using them too often, and I try to heed this but this is how I was made.

It’s who I am.

One day in the future, I want to do a creative writing course just because I want to. One day….

I love to talk, to meet people and I especially love using words to tell other people when I love or appreciate them. My husband: Mr Patient is not so much of a “words” person. He is more of an “acts” person. He would fill my car with petrol, wash the dishes or sweep the floor before he’d tell me that he loves me.  But I’m totally ok with that because I now know that he is showing me that he loves me instead of using words.

But words are also what hurt me more than anything else. I would rather be punched, rarely hugged or have my birthday forgotten rather than have someone speak harshly or unkindly to me. I get devastated whenever someone says something callous or thoughtless to or about me and I react badly to harsh tones and inferences in speech. My husband tells me that I’m too soft and that I need to eat some concrete and harden up, but I respond that I would LOVE it if it were that easy! He said he’d never met someone that cried as much as I do before he met me.

There are also some TV shows that I simply cannot watch because the interaction between the characters is far too nasty and I can’t stand seeing people get hurt even if it is just acting.

I mostly dislike email and sometimes struggle with text messaging because tones are often hard to detect through text. I have difficulty working out whether someone is joking or whether they are really having a dig at me.  If the same message were spoken to me either on a phone or in person-I can tell immediately what is meant by their remark because I can also read their facial expressions or body language or by listening to the inflection in their voice. But not when the comment is in writing only.

So I suppose you’re all wondering why I spend so much time in bloggy land where everything is in print?….Well, most of the blogs I read are about parenting and it’s easy to tell in the first few paragraphs whether or not the author loves, hates or tolerates their children. I mostly get it right because the “about me” section explains a lot and I get to know the author once I have been reading their blog for a while.

I often think about the effects that words have on my children.  While I do try to use words positively around and to them-I am far from the perfect mother!  I’m not saying that I always praise my children endlessly and never raises my voice…..but I do try to be careful what I speak over and into them.

Like I said – I am FAR from a model mother…I have yelled at them at the top of my lungs, I have called them little brats (and other choice words), I have threatened dreadful things and I have given them tongue lashings for disobedience but I have NEVER ever told them that I don’t love them, that they are a disappointment or that I wish I never had them.   Those are words that never leave a child. Once they’re out, they can’t be taken back. They penetrate the child and get etched into their memories for years to come.

I have learned through personal experience that words are powerful.

I’ve noticed that all 3 of my children are also super sensitive to words. All of them have taken after me in that area. Their little faces light up when they are complimented, when they are praised and when they are told that they’re special. They are not yet so good at using words to convey feelings and thoughts but they certainly understand them. My kids remember every single compliment they’ve ever received and remind us of them constantly!

But I have also seen the flip side.

I have nursed broken-hearted children in my arms when they’ve been bullied at school by venomous tongued peers. I have prayed with children who have had those in positions of authority abuse their position and call them unprofessional names and I have consoled all of them at various times when a sibling uses words harshly to get their point across.

They are all like me. They all need positive words and I am going to do my darndest to make sure that they get them!

And as for remembering words that were spoken…..there is an old saying that’s been too often misquoted. And that saying is “Forgive and forget”.

In the bible, we are taught that God forgives our sins and removes them as far as the East is from the West. It also tells us to forgive others as He has forgiven us but no-where does it teach that we are to forgive and forget. It just teaches to forgive.

In fact – If we were to forget every time that we forgave someone…..We would be forever walking blindly back into the same old situations and continue to be abused over and over again. We need to remember these hurts so that we can use the memory of how it affected us to guard ourselves from hurtful situations being repeated.

The trick is to learn to forgive those who have spoken wrong of us and move on carefully. Because only when we have forgiven do we take the weight off our own shoulders and are then free to live our lives in total peace.

Have a good weekend all x

The eviction letter.

Dear Fear, Insomnia and Anxiety,   

Go away. Your lease is hereby terminated.

I know that I’m really not using my manners here, but seriously….you have all totally worn out your welcome in my son’s life. It’s time you move on to someone else. We don’t want you here anymore.

You are exhausting and you take up far too much of his time and energy.

We are ready for new exciting adventures and he cannot do that until you get out.

Anxiety, you have been with him the longest. You take the silliest little thing and cause him to perseverate on it for hours and hours until the whole freaking family almost goes around the twist!

Enough already!

You have forced him to take pills to keep you from enveloping him completely.  The very mention of certain activities and situations awakens Fear, your partner in crime. And he’s a really sneaky bugger.

Insomnia, because of you, our entire family feels like the walking dead. Sleep deprivation is used as torture in some countries…..did you know that?

Yep….that’s right.

Torture…think about that for a minute.

We no longer want you hanging around causing havoc so get your bags, collect your last pay cheque and disappear forever without a trace.

My son has internalized so much more ickyness than should be humanly possible to bear. You have encouraged him to sit out of his own life and miss out on too many fun things.

I simply won’t let him miss out anymore. 8 year olds deserve to be kids and do the things that kids do without the debilitating grief that you cause him.

You need to find a new playmate.

Pronto.

And Fear, what can I say to you? You show up at the most inconvenient times, causing uncontrollable tears and ridiculous panic attacks.  You need to develop more manners and common sense like nervousness who only shows up periodically and doesn’t need to be told when to leave.

So, scumbags, it is time for you all to make like a tree and leave.

I’d like to say it’s been fun knowing you all….but it hasn’t.

Since you’ve sneakily slid you way into our lives things have completely and entirely sucked.

So off you scoot, leave your keys under the doormat and don’t let the door hit you in the butt on your way out!

Best of luck to you….not!

Fi. ….Harley’s mother.

P.S. Please tell paranoia that he’s on notice and I’ll be talking to him soon.

James 4:7

  Submit yourselves, then, to God. Resist the devil, and he will flee from you.

Wordless Wednesday 19/10/11….Can you tell I have boys?

Dear Disneyland….

So we have proved to ourselves that the seemingly impossible is more than achievable. And can I just say that this in itself is HUGE!

If someone were to suggest to me as recently as 2 years ago that I would be flying across an ocean for 14 hours with 2 aspie children, I’d have laughed in their face before diving into no-cope mode at the very thought and start heading directly for the closest exit.

But today I can hold my head high and confidently proclaim that WE DID IT!!!!!

And what’s more…..we had the BEST time!

In fact, we had such a brilliant holiday that I want to write about ALL of it but there’s so much to tell that I have decided to divide it all into several posts that can be read over the next couple of weeks or so.

Bite size posts if you will.

And today, I’m going to write specifically about the main reason for our trip and that is DISNEYLAND!!!!

It certainly lived up to its catchphrase of the “Happiest Place On Earth”.

In fact, I was so impressed by our experience that I have written this letter below to the management to express how grateful and appreciative we were.

Dear Sir/Madam,

I am the mother of 2 children with autism spectrum disorders and my family visited the wonder and magic that is Disneyland only 2 short weeks ago.

Our experience in your parks was incredible to say the very least and I am writing to say a big and heartfelt thankyou.

Thank you for your compassion and willingness to assist my family in any way that you could.

We received one of your Guest Assistance cards from your Guest Services on the second morning that we were there and used it many times throughout our time in Disneyland.

Thank you for recognising that my children and many others like them have a “hidden disability” and that there is a huge difference between a child not ‘wanting’ to wait and a child who physically cannot.

Thank you for not treating us as though we were free loaders who just wanted a free pass past the hundreds of people queued up for rides.

Thank you for understanding that we needed quiet waiting areas without excessive noise, lights, smells and crowds and providing this for us.

Your wonderful cast members made us feel very welcome and went out of their way to help my boys enjoy their time at Disneyland.

Thank you for helping our family to do what every other family with typical children manages without even a second thought.

One of my children and also myself cannot eat gluten and we were literally blown away by not only the choices that you provided but also the manner in which you provided it.

We ate in several of your restaurants and also at the Storytellers Café in your resort and were astounded that each time the Chef came out to our table and helped tailor a menu to our needs specifically.

We did not find eating gluten-free this easy anywhere else in California State!

We are eternally grateful that my son was able to enjoy a burger and fries that wouldn’t make him ill and be just like all the rest of the kids around him for the first time in a very long time.

Your cast members all made our experience extremely positive and we will go out of our way to tell other families how impressed we have been.

Thank you again from a mother who is eternally grateful that her family was able to successfully visit the “happiest place on earth”.

Yours Sincerely,

Fiona……………

As a very close and fellow gluten-free friend always says to me….We need thank the places that do get it right and suggest improvement to the ones who get it wrong or nothing will every change for the better. If they don’t know….they can’t change it.

And I believe that this is also true as an autism parent.

The more we applaud those who help us….the more that the message  will spread.

Gratitude goes a heck of a long way! People LOVE to be thanked.

And the more we thank, the more that community will continue to gain awareness of the needs of families living with autism.

But on the flip side – if we keep quiet, nobody will ever learn a thing and we will keep fighting and losing the same old battles time after time after time.

**** Mark 9:23 ****

 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”

Wordless Wednesday 12/10/11… It’s all in how you hold your tongue..