Wednesday, April 2, 2014

I chose today to share this...

Today seems like the most appropriate day to write and share this post. I've been sitting here contemplating whether or not I am courageous enough to do this... Whether I feel knowledgable enough, educated on the topic enough or even strong enough within myself to write this... The first two I believe will possibly never be the case but the last I feel that I need and WANT to be! So I am going to try... Bare with me :)
A few short months ago my world was different. My life was plodding along, my days were busy, life was a little tough, stressful, all those 'normal' things we complain about. The same mundane routines that pull you down, the same fun friendships that lift you up. That's just life yeah?
Then in a short instant, things changed. A conversation with a childhood friend, one that I've known since the age of six to be exact, one that I will cherish forever, changed things for me. I mean REALLY changed things...
She asked me a question that no one else ever had. One that deep down in my soul I'd asked myself, time and time again. One that I'm SO eternally grateful that she did ask... The question that all parents want to answer with confidence and pride. One that made my whole head spin and turn my insides out. Something inside of me knew that I couldn't answer it with the boldness I usually possessed. I answered fearful, can't say confidently, but definitely truthfully! Someone whom I wholeheartedly trusted, asked what I so needed to be asked... And I answered honestly! She knew...
What was the question? That question that changed my life? The one that changed my world that I knew only minutes before? Made every light in my head switch on brighter than an oncoming train in complete darkness?
"So Bells, how is your little man doing? How is he developing?"
BOOM!!! That oncoming train hit me.... HARD! All of a sudden I was circling with my own questions I already had in my head. Every single thought I'd already had was surfacing and hitting so intensely that I couldn't breathe. But... I answered! I answered with the same honesty that she so graciously showed me. WOW!!!
That was the first moment I realised that my little gorgeous 3 year old man had Autism Spectrum Disorder.
Did I already know this? Heck yes! Did I have a name for his quirky little characteristics? Heck no! He was just my 'unique' little meatball that I knew was a little different than my first child.
I felt guilty for always comparing his development to my eldest son, so therefore would push those thoughts away. "Every child is different", I would tell myself. My first was the 'angel baby' that most mothers speak of, so this was my second that was going to give me a 'hard time'.
I had often sat and wondered what I did differently. I 'parented' both the same. Okay, the second obviously got less of my time, but why was he such hard work? Was it me? Why was I not coping? Why did I feel so stressed all the time? Why did his tantrums and whinging sound like nails down a blackboard to me? Why did I fall into bed at night in an exhausted heap? Why was I struggling to be a Mum to this beautiful little boy of mine?
Ahhhhhh relief! Uncannily enough I felt relief from that one question my beautiful friend asked and I had answered honestly. I could breathe again... Admittedly it was through uncontrollable tears, but I felt a weight gone. With her incredible knowledge, own personal experience and amazing support, I probably would have not gotten through that initial 'shock patch' (that I like to call it) and moved forward with gusto. She had turned my 'Mummy intuition' into overdrive!
Next step... Diagnosis.
I honestly, looking back now, already knew what the outcome would be. After hours and hours of googling and researching I had to stop. Yes, Google can be a great friend to us all, but in circumstances like this, it can be your worst enemy! I had to pull back from it for a bit, it got WAY too intense.
I won't go into the nitty gritty details of how it all went but in the simplest form for those that would like to know... Here it is.
  • GP appointment for refer all to Paediatrician.
  • Paediatrician appointment to assess whether there is enough concern to refer for an official assessment.
  • An official assessment with a team of therapists, in our case a speech pathologist and psychologist, to give a final in depth written diagnosis.
  • Then, with an official diagnosis in writing, back to the paediatrician to discuss starting therapy with specialists.
The above process was my experience to get a diagnosis, so I want to share that yours may or have been different.
So that's where we're at... We started therapy in Feb and currently seeing a Occupational Therapist and Speech Pathologist.
This is all new for us, VERY new! It's all quite daunting, to say the least, the very least. It's been honestly, the toughest challenge that I have ever had to endure. I am not one, and let me make this clear, that ever strays from having a positive attitude towards anything. I've had my share of ups and downs over the years and staying positive has always gotten me though. But I'll be honest, this was hard!
This was, to be quite frank, the most confronting process that I have ever had to face. A pure stranger (paediatrician) tell you that he had 'more than enough concerns to move forward with an assessment for Autism' was earth shattering for me. As a mother, I'm sure I can safely say that, that no parent EVER wants to hear that their child is going to face 'challenges' in any form.
I sat there for an hour in his rooms, listening intently and watching every single 'test' he did with my child with my heart in my throat. I held back tears of heartbreak, tears of frustration that I couldn't answer for my baby, the questions I knew my boy COULD answer but just didn't know how to find the right words to use. It was torture!
Those first few weeks of diagnosis were an emotional blur but I can still clearly remember how gut wrenching it was and how much my heart hurt to watch it all and come to terms with what was happening. My baby was struggling and I had been struggling to help him.
That brings me to the now... How my world has changed. How our days are different now and how those 'stresses' I thought were so important a few months ago, are now things I don't even consider worthy of taking up my time.
I now, after overcoming my initial emotions, can sigh a big sigh of relief and feel comforted by the fact that I'm honestly and truly BLESSED! My baby is not sick, he is perfectly healthy... He is absolutely amazing!!!
He is ridiculously intelligent and shows that in so many ways. He has an amazing ability to retain information and recall it in ways that astound me. Yes, he gets frustrated to the point of 'major melt down mode' I call it. But hopefully, with my understanding, love, devotion, strength and patience, (some days my patience is not always there LOL) we can DO THIS!!!
He just turned four on Sunday. We celebrated with a trip to Scienceworks to see his favourite interactive robot Nao followed by a train ride to Southern Cross Station, just so we could just sit and 'trainspot' (another favourite past time of his). It was EPIC, as his big brother would say!
So, yes my world has changed... Not in the way I expected or would have ever imagined. But you know what? After countless hours of thinking, soul searching and asking why... I can now confidently say that I wouldn't change a thing! This IS my new world and I couldn't adore it more!!!
It's all still raw, still very new. I'm still in a place that I find is very emotional, but I'm told that that will get easier.
But uncannily enough, I WANT that emotion to stay with me. I don't ever want to get numb to it. I want it to drive me to push further, try harder and be stronger. I want it to always be present and make me do things like write this post. After all, that's the emotion that made stand in front of that oncoming train, let it hit me and then wipe my self off to be the Mummy I know my son needs to help him 'SHINE'!
So today, I chose to share this post as it's Autism Awareness Day! I want to thank everyone who has been there for us along the way in this new adventure of ours. I want to share my utmost gratitude to my friends and family that have supported me in my times of tears and frustrations, listened to my stories and laughed with me and held me up through the tough days. You ALL mean the world to me and I honestly would not be able to do this without YOU! Love and hugs my gorgeous ones, forever and always xoxox
Please be the 'light' that autism needs and help those affected by being...
That little more patient with a Mum dealing with a tantrum in the supermarket.
A little more kind to that 'quirky' kid who can't help but fidget that's standing next to you.
And a little more aware of how sometimes, someone's world is a little different than yours.
I could go on and on... But you know what you need to do... ❤️
Here's to being 'unique'! I think it ROCKS!!!! xo
Kye :)


  1. What a beautiful post Kylie, honest and from the heart. Your little man will shine with you beside him. xx

    1. Thank you so much Sue. It actually felt quite empowering to post... It's always scary putting your thoughts and feelings out there but this was something I felt I needed to do for my own personal growth.