Guest Blogger; Are you Autism Aware? Our Journey with Autism.

 

 

How many times have you seen a kid playing up and thought; wow he/she is naughty? If that was my kid? Don't the parents have any control over that child? I know I have.

 

How many times have you stopped to think; maybe that child has Autism? I know I hadn't...until I read Peta's story - then I was like, me oh my, I've been so ignorant!

 

I must admit, ashamedly, that Autism is an illness that I don't really understand because I've never known anyone close who has suffered from it - and sometimes, I worry about kids being overprescribed drugs and labels by society, doctors, teachers, parents etc, when maybe the child is just very active, and somewhat different to other children.

 

I mean - what is normal? Who defines normal?

 

But then I read stories like this one, from a mother,who knows her child probably better then anyone else, and who knows, deep down, that her gut feeling is telling her that something is different and special about her child and I realise that labels and medication aren't necessarily a bad thing, and that many times they are absoloutely necessary so that the person can receive the support, understanding, respect and treatment that they deserve (not to mention to help with the sanity of those who are supporting them!)

 

I'm so grateful that Peta reached out to me to share her story because that's what my blog is alllll about; sharing real life experiences with those taboo unspoken conversations, so that we can shed some light and help people to understand the truth behind the misunderstandings.

At the end of the day we have a choice about whether we open our minds to Autism, or whether we remain ignorant.

I'm so glad that Peta has helped with my perception of the illness, and has opened up my mind, and heart, to see just a glimpse of what it must be like for the child, and their families.

 

So my question to you is; are you Autism Aware?

 

 

Take it away Peta. 

 

 

With April being Autism Awareness month and April 2nd being Autism Awareness Day I thought it was a good time to share our story so far about living with Autism.

What is Autism?

 

Autism is a lifelong developmental condition that affects, among other things, the way an individual relates to his/her environment and their interaction with other people.

 

The main areas these people find difficult are communication, social interaction, restricted or repetitive behaviors and interests as well as behavioural issues.

 

In Australia 1 in 100 people have Autism, with four times as many boys effected than girls.

Meet Jay - isn't he adorable?

   Jay is 6 years old and is diagnosed with high functioning Autism and ADHD ( Attention Deficit Hyperactivity Disorder) . When Jay was born in August 2008 he was a little premature but a healthy newborn. He would feed every hour, his sleep was very limited and he never really showed much emotion.

 

What a little spunk with his hair all spiked up! Jay and his sister Ilka.

 

As Jay got older he didn't hit the milestones at the same time his sister Ilka had. I began to worry when his words didn't come and when they did they were hard to understand, his crawling and walking were later than most, his behaviour also became very unsettled and he was easily frustrated. He would also only eat very limited foods.

 

  People told me not to worry as boys were slower than girls , so I brushed it off and kept battling on.

 

Jay started kindy in 2012 . I was very apprehensive as he was struggling with toileting still, still wasn't talking clearly, his behaviour was spiraling out of control, he lacked social skills to interact with others and his diet had become extremely limited.

 

 

After attending a few sessions with him I became very alerted that something really was different about Jay.

 

I did some research and everything was pointing to Autism...but what was Autism?

 

 Surely I would have known before now if my child had this?

 

After talking with a few people I knew who had kids with Autism I noticed Jay had all of the traits...now what to do about it?

 

My first step was to see the occupational therapist who attended the kindy. She then referred me on to CAMHS (Child Adolescent Mental Health Services). Both agreed that Jay was showing traits of Autism. We were then referred by Jay's local doctor to a pediatrician. The ball was now in motion and I finally felt we were getting some where.

 

I researched day and night and was certain this is what Jay had. Appointment after appointment and being stuffed around for over a year and half we hit luck when a new pediatrician fitted us in for a appointment...and gave us the diagnosis in January 2014!

 

I remember crying and crying...not in sadness but in happiness that finally we had a answer! It's a hard pill to swallow ,but I had been certain since day dot  that Jay was different and to have this confirmed meant Jay could now receive the help and services he needed to.

 

 

I have been told over the years that he was just a naughty, spoilt brat, fussy, rude, arrogant, deaf, won't look at people when they talk....but no! Jay wasn't these things , he was Autistic.

 

 It explains it all!

 

These comments and judgements by other people used to upset me.

 

I will never forget one shopping trip we were happily shopping and Jay was starting to get aggravated. Next minute Jay was in full behavioural meltdown (these include lots of loud yelling , screaming , hitting and biting) with everyone now staring at us and passers by making comments, there was no way I could calm him in this environment. So I pulled him out of the trolley, left my half loaded trolley mid isle and went to walk out to the car where I could calm him easier. A passer by made the comment that "aren't you going to put that back?"

 

 No!

 

My priority was my child and his safety and well-being.

 

 

During the long process of the diagnosis , my lack of understanding of what my child needed, and constantly dealing with unexplainable behaviours, I myself ended up in hospital.

 

I swore I was having a heart attack with pains in my chest, my heart was racing , shaking, I couldn't breath and my hands were turning blue!

 

No, I wasn't having a heart attack, I was having the first of many panic attacks.

 

 

Going to the shop became a massive job . Pulling up in front of the shop and literally not being able to get out the car. I learnt to regulate myself and I haven't had one for a little over 12 months (touch wood).

 

 I no longer care about others judgements or negative opinions because the only reason they make them is because they aren't Autism Aware!

 

Today Jay has a great team in place with his pediatrician, occupational therapist, speech pathologist and a massive support crew at school. Everyday Jay is improving.  

 

We still have days that are extremely challenging but we live by this little quote " everyday is a new day for us and we don't dwell on what happened yesterday."

 

So next time you see a child screaming in the shop maybe stop and think...Do you know this kids story? Can there be more to this situation then meets the eye?

 

  Please take five minutes and make your self Autism Aware . There is no cure for Autism but there is a cure for ignorance!

 

Thanks Peta

 

Via

 

 To find out more about Autism visit http://www.autismawareness.com.au/

 

To find out more about panic attacks visit Beyond Blue.