Thank you so much

Hi everyone.

It's such a wonderful thing to see that this simple blog, which has been going since October 2010, is not seen in nearly 10 countries and more than 1000 people a month.
I love reading your comments and each one of support and agreement lifts our spirits.
The truth is, we all have a story to tell because we are all on a journey of discovery and not all journeys are the same. We all need to share our experiences and lift one another up for this journey is a difficult one.

Please repost this wherever you see fit! Share is on FB and Twitter! Think about starting your own blog!

Much love

Jason Renee and Zac Wilson

Dear Denise Scott (aussie comedian)

(Warning - offensive language used)

Dear Denise Scott,

I watched a clip of you at the esteemed Comedy Gala for 2011, a place you rightfully should be as I think you are a great comedienne, sadly, your skit infuriated me and I know I am not alone.

You will probably never read this. You probably don’t care. I know that anything that happens in this world or in society is free reign for a comedian. I love a good laugh and enjoy the humour of many comedians. I’ve enjoyed laughing at crass humour as much as clean. I love it when a comedian points at others and makes us laugh at them, I admit that freely. I find it hilarious when I know exactly what they are joking about.

I also know that comedians can hide behind their humour as if it is an excuse that they can say anything they want, no matter what offence has been caused.

I also know that comedians are humans like me, prone to make mistakes, and jam their foot down their throat. Occupational Hazzard I guess.

Your segment was offensive in the first 2 minutes. The instant you joined the words “I hate...mild asbergers(sic)....and fucked up people with behavioural problems” was the instant you offended parents of  1 in 4 children that are on the Autism Spectrum. A “fucked up problem” that effects more kids than cancer, more kids than almost any other syndrome or disorder, more kids than you know! The instant you uttered those "hate" filled words, you offended adults who have moderate or mild autism who have suffered at the hands and mouths of bullies their entire life, for reasons they can’t explain, nor understand. You offended families, workers who spend tireless hours helping them and even parents of kids with other disabilities.

What I find funny is that my kid would not have any clue what you find funny about him that you would label him as “fucked up”. I'm glad you stopped short of saying "retard".
You know what I find funny? It's that he lives in his own world and has no ability to understand social situations as they make him uncomfortable, which would mean he would likely never be in your company. And even if he was, I wouldn’t apologise if he made you uncomfortable or was badly behaved in your eyes.  

You have every right to say what you want and talk about in a humorous way what pisses you off, but using autism as the butt of your joke about how much you “hate” people and how they are only “fucked up” (implying that everyone else is not),was wrong. Just because you cant see it Denise, does not mean it’s not real.

You can’t see love, but I bet you know that’s real!

My kid and any autistic kid are not badly behaved and they are not fucked up. Autistic and aspergers kids and adults are....not like comedians at all.
I know you didn't mean it. I know you could have chosen a better line.
I know your not mean or mean spirited.
I know you are a mum.
But...
I challenge you to spend some real time with a family that has an ASD kid.

I also challenge you to find the funny side of autism and do a benefit concert for Autism Victoria to help raise funds for kids and families dealing with autism.

I also ask that you remove the line from your next sketch.

How did we know? We just did....

How did we know?

We don’t get asked all that often if we knew that Zac was autistic or had a problem. I guess we just always kind of knew.

Thanks to an episode of the awesome show “Judging Amy”, we were able to set the wheels in motion that would end up with Zac assessed for Autism.

In that episode, there was a character with a child who was labelled “autistic” and they implied this by showing the child lining up cars. We now realise that this was kind of stereotyping autistic behaviours as a-typical, but we also appreciate that people need some crystal clear images sometimes to help with their ignorance.

What is hard is that Autism affects each child differently. Nothing is a-typical. Its not called a “spectrum” for nothing. There are more than 140 different aspects of Autism, then there’s the generic “not otherwise specified” diagnosis that bundles kids into a pigeon-hole of “we know its autism, just not sure which kind”.

In our reality, Zac lined up cars - all the time. He didn’t play with them like he was pretending they were driving down a road, no, he just lined them up, spun their wheels and investigated their every aspect closely.

One day Renee walked into the room and he had sorted out his cars. Interestingly they were sorted into groups of “same”. He was just 2 years old. It was kind of spooky.

Once diagnosed, it made a whole lot of his behaviours obvious. From birth he displayed certain characteristics that we labelled as “eccentric” that now in hindsight, were part of the disorder occurring in his mind.

These behaviours were more sensory as opposed to  behaviour and it can be interesting looking back.

He loved to be swaddled. Not just wrapped, but swaddled, in a cocoon until he was about 8 or 9 months old. He also didn’t laugh a lot as a baby. He didn’t interact with others like other babies would.

Then there were the milestones that were missed or delayed. He barely crawled and went to walking at 13 months. He spoke little and it was only what he had learned from TV shows like Thomas and Elmo. By the age of 2 he still barely spoke and what we know now as echolocaic language, Zac could not have a conversation with you or tell you how he felt.

Then there was the fact that he did not play with other kids or get involved in any group time at daycare. He simply played on his own. And no matter how much Daddy tried to get him interested in things other than cars, Thomas, trains, and wheels, he would refuse and be happy in his obsessions.

As I have blogged previously, Zac is not ashamed of his obsessions. Hell, he has no idea he is obsessed. This was likely our biggest indicator of the fact there was something unique about the boy.

The meltdowns were also the other key indicator. The fact that he could not calm himself and that he went from zero to tantrum in just as many seconds also made us cock an eyebrow.

“He’s just slow”, they would say. “No, its more than that.”

“He’s just lazy”, one friend said. “No, its more than that.”

“Just wait for his tonsils to be taken out”, the doctor said. “No, he can’t have a conversation with us.”

“He’s not obsessed, all boys love their cars, I loved my cars.”, the father-in-law said. “No, this is an obsession.”

“There’s nothing wrong with him”, the ignorant one said. “Thats because you don’t know him.”

What we are most proud of is that we got the ball rolling. Like my own mother, who did the same  with my brother (and never gave up), we went into our paediatricians office with examples and a firm belief that there was something askew with our boy.

Even when the assessment was done about 6 months later, the psych and speech therapist agreed that Zac was on the spectrum, only moderately, (however, there are days where he is firmly on the spectrum) we nodded and smiled. They even asked if it was something we were expecting.

It was, we had known all along.

I'm a wanderer, yeah a wonderer....

Autistic Kids wander, they actually have a name for it.

If you haven’t heard, this week a 5 year old autistic boy was killed by a passenger train after wandering on the tracks. http://www.theage.com.au/victoria/boy-had-roamed-before-tragedy-20110331-1cngk.html

I was on that train.

We didn’t know at the time that it was a child that had died. We just knew it was serious.

On my way home, Renee rang and told me it was a child.

The next morning I found out he was Autistic.

I instantly thought of my own boy, who is 5 and Autistic.

We have been lucky.

Zac is a wanderer. He can’t stay still. He has to go where he feels he has to go.

We are lucky because that’s mostly to the toy section of Kmart or Target, but its difficult to keep him with us.

Kids wander, don’t get me wrong, but an autistic wanderer is far more dangerous. Its easy to loose kids, we know. I remember being lost as a kid, so does Renee, but we knew we were lost.

Zac wouldn’t care. Zac wouldn’t even know he was lost or know what to say if he was asked.

That’s the difference with kids on the spectrum, their understanding of things we take for granted is skewed. They often don’t understand right from wrong, and its not an excuse, its not bad parenting, its just reality.

Zac wandered across the road at the age of 2 and into a neighbour’s yard. Still not sure what fascinated him, but there was something in there he wanted. He was not yet diagnosed. Someone had left the gate unlatched (me I think) and my mother-in-law was visiting at the time and took it real bad thinking she had done something wrong. It caused a major argument (which was disappointing) and it was all because Zac had wandering legs which he could not really control.

We moved to a small country town that had not decent fences. As I write this, I can look out the back at a 50 year old fence and see a huge gap into the neighbours back yard. Thankfully there is wire across it so Zac can’t get through and see the cats that he thinks are his. He meanders around the yard in his own world with his own plans and desires, looking for anything he can get his hands into. If the door is open, there is no doubt he will quickly end up outside, and if the wire door is latched, he has no issue finding a chair to stand on to open it.

The worst case we have encountered is when we went to the shopping centre one afternoon. Renee was looking for some accessories for her outfit to a wedding the following day. I was outside the store with him, then he went into see Renee. In a matter of maybe 2 minutes, he was gone. And when I say gone, I mean – G.O.N.E.

The following 10 minutes were the most harrowing we had ever experienced. Your heart sits right in your throat beating with every frantic step you take. Your mind races, thinking about where you last saw him, what he was wearing and trying to work out where he could possibly be. Your eyes search every store, glance over every kid. Then the panic starts and you have to fight the lies your mind tells you – that he’s been taken. With every breath you reassure yourself that you will find him.

After I had gone down as far as I thought he could go in only a short time, I went back to Renee who had still not found him. Her face was white with fear and I knew that she was thinking everything I was. Our kid liked to wander and now we had lost him on a busy Friday night in a huge shopping centre.

Thank god Renee thought of Target. I raced there immediately and straight to the toy section.

There he was. None the wiser, not aware of the fact that he did something wrong nor concerned with the worry. No, all he wanted was a Transformer.

Zac didn’t get a toy that night. We went straight home.

Renee and I were both so distraught.

No one considered it strange that a nearly 5 year old was wondering the mall on his own.

And now I think about that little boy who was also seen crossing a major highway and no one stopped to help or called the police.

Have we become so self absorbed that we can no longer see when a child is in danger and think to help? Has society become so afraid of itself that we are afraid of what others will think?

That little boy could have been saved.

My heart breaks for his family.