Wednesday, April 3, 2013

Lighting it up blue : The personal journey

The Sydney Opera House Lights it up Blue for World Autism Awareness Day
April 2nd, 2013
For a few days now I've been spruiking the lead up to World Autism Awareness day. Funny how much things have changed in the space of a few years. 10 years ago, hell even 5 years ago I never imagined that I be out here spreading to word about Autism. What parent does? Like with many other causes, unless you're personally affected or a loved one is you would usually see someone's post, acknowledge it, and move on. It's not callous, it's just life. Then I suddenly became personally touched by Autism.

I want to go back a few years and share our story, so tune out right now if you're not in the mood for a long winded personal journey.

Liam is our firstborn. He was an adorable baby. He slept well, he made eye contact, he communicated with you making his baby sounds, he rolled at the right time, he started solids at six months, he sat up when he should have, he started walking around holding on to furniture at 10 months. All awesome developmental milestones. And taking? Boy could he talk. Even as a baby he was always noisy and babbling and once the words started he wouldn't stop. But he just wouldn't walk. It look until he was just over 18 months for him to take his first few unassisted steps. We didn't see it as any concern, he was just lazy right?

He was an adorable toddler. Hardly ever had tantrums, just loved everyone to death instead. Jack was born when Liam was only 12 months old and he was Liam's obsession. Liam constantly had to be touching him, laying on him to be exact. We didn't see it as any concern, he was just loving his brother right?

Liam loved books. Every night we'd put a few books in his cot with him and every night when we'd check on him we'd find the books all nicely lined up down the end of his cot all facing in the same direction. EVERY . SINGLE . NIGHT. We thought it was cute. We didn't see it as any concern, he was just really smart right? Hell we even took photos of how clever he was. 

Liam suffered from chronic constipation. We took him to the doctors several times for this. Both the doctors and health nurse told us that toilet training is harder for boys and to just give him time. We were even told he was just plain lazy. But we thought it was fine.  We just keep dealing with the symptoms with the hope that he' d get the hang of the toilet eventually.

Liam was an adorable little boy who loved Matchbox cars. All those cars so neatly arranged in lines. We were so proud that he was neat, tidy and organised (a skill he certainly didn't inherit from me). We took photos of the awesomely arranged cars. We didn't see it as any concern, he just liked to be tidy right?

Liam loved kinder and everyone seemed to adore him right back. His kinder teachers said he was such a loving little boy but boy could he talk. From memory the exact quote from her was "In all my years as a teacher, I've never had a little boy so inquisitive and ask so many questions". That's good right, inquisitive? We thought so.

At school he made friends with everyone....and I mean EVERYONE. Still to this day  it amazes me that when we walk through the school grounds that every single teacher we pass knows him by name. Tons of kids say hi to him. Kids from both primary and senior school. They all know him by name and he knows all of them right back. And we don't go to a small school, it's in fact one of the biggest schools in Victoria. So while him chatting away to anyone and everyone seemed to be great, it was actually a hindrance in the classroom. He would interrupt the teacher, interrupt other kids. What he had to say or ask would trump what anyone else was doing. The teacher divised ways of controlling the behaviour by giving Liam post it notes with exclamation marks and question marks on them. He had 20 of each to use every day so he had to think about his questions and statements and how important they are before saying them. At the time I thought it was great, but in hindsight I shake my head.

It wasn't until his second year of school that we really noticed that he seemed to be struggling. He was the target of some bullying (which although it doesn't excuse the bullying, it didn't help that Liam was the self appointed class policeman who had to dob in every single wrong doing that he saw), he was struggling maintaining friendships, his reading and writing was not improving at all and was seemingly getting worse. He was cranky a lot and would throw massive tantrums if things didn't go his way. But on the other hand he would be in your face and constantly having to sit, lay, or touch both Brian and I. In that year I had many, many appointments with his teacher. She was the leading teacher for that year level, she seemed to be switched on, from my limited experience with teachers she seemingly knew her stuff so I trusted her each time she downplayed my concerns. I believed her that there was nothing wrong with Liam other than his lack of confidence. I made more of an effort with his reading and spelling, I did so many things to try to boost his confidence but nothing really seemed to change. 

In his third year of school the struggles continued. He would come home crying about how mean his friends were to him. He started stealing things from school and bringing them home. Weird things. Paperclips, shiny rocks, broken pieces of rulers, almost used up pencils, the teacher's brightly colored eraser. He was like a magpie finding all the shiny objects for their nest. I spoke to his teacher about all of my concerns, who gently suggested that I should take him to the GP. She suggested that he may possibly have ADHD. That night I googled my ass off and found myself nodding and crying from relief that everything just seemed to  fit. It all made sense. 

The next few months were a whirlwind of GPs, Paeds, filling in surverys, getting the school to fill in surveys, more specialists before Brian and I finally sat alone with a Paediatric Neuropsychologist to go through the results of all the testing. I wasn't upset, I was looking forward to finally having answers. I had no doubt that he had ADHD. The Pead had already said as much but she had said that she though he also had an anxiety disorder. Today we could move forward and get the help he needed. I remember the Neuropsych explaining how the tests worked, what his results meant, how we could help in certain areas but I remember nothing after the words High Functioning Autism. Honestly the rest of that meeting was a complete blur. I couldn't remember what was said even if you paid me. To say that I was completely blown away and shocked would have been the understatement of the year. Never in a million years did I expect an Autism diagnosis. 

Initially I was a parent out of their depth, with no idea of where to go, what to do or even how to get help for him. It really took at least a few weeks for the reality of what this meant for not only Liam, but for us as a family to sink in. The specialists, the obsessive online reading into how I could help him, the fifty billion forms to fill in, the meetings with the school, the routines at home, the plans all effectively put in to place to do everything we could to make Liam's life as little a struggle for him as possible. 

It's almost been two years since Liam's diagnosis. It's something I very rarely talk about online. Not because I'm ashamed. On the contrary, I'm so proud of my little man. Every day I see but a snapshot of the million miles an hour that his brain functions and it blows my mind. How he has learnt to function in this world is a testament to his resilience and endurance. But I'm sharing today because it's Autism Awareness month. And people need to be aware.

The day that Liam was diagnosed was life changing. We knew so very little about Autism. If we had more awareness we could have made Liam's challenging first few years at school so much easier. Those early years are so important to a child who has an Autism Spectrum Disorder. Early intervention really is the be all and end all it's made out to be. Yes, I do kick myself for all the shoulda, coulda, woulda's. All those little quirky things we though were so cute were big red flags waving at us be we were not aware enough to see them. It took a long time to stop beating myself up over not seeing it earlier, so I'm doing my damnedest to help other parents by putting this all out there today.

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