Living with autism part two - My story

A local mother of two from Young with a son on the spectrum shares some of her experiences as the parent of a child with Autism and why she has joined the new parents group for children diagnosed with ASD on Facebook.

A woman’s intuition is a very powerful thing. It’s not an easy thing to explain, but it is important to listen to that feeling, to follow it through.

Looking back on it I can’t pinpoint when my intuition kicked in, was it when I had an induced labour because my son was almost four weeks overdue? Was it when the umbilical cord wrapped around my son’s neck and he came out an alarming grey colour? Maybe it was when he was delayed in reaching some of his milestones?

Honestly, I can’t tell you, all I can tell you is that by the time that he was 18-months-old I knew it wasn’t simply a case of boys developing later than girls as I had always been told and told myself.

At the time I remember wondering if I was paranoid, if I was I sick and twisted and somehow subconsciously wanted something to be ‘wrong’, however, that all changed when I voiced my concern to my mother and then following on from there when one of my brothers started dating a woman at university studying to become a teacher.

He didn’t sound out words like other children when he started to speak, nope, not my boy, he would blow raspberries and he would smile – he would always smile – but when he did start to speak it was in full words, ‘no’ being one of his first. He didn’t engage in peek-a-boo, he would only eat foods with a certain texture and he would always sit back and soak everything in around him, all while seeming like he was in his own little world. When he was a little older he became obsessed with cars and trains, but rather than play with them by rolling them around he would line them all up. They would be very precise and he would get his head right down on the ground to make sure they were perfect and if they weren’t he would lose it. And so his meltdowns began – although looking back I had to wonder if they had been happening before and I hadn’t thought anything of it.

Without fail, every time I would go down the street he would lose it. Every time we broke our routine, he would start getting really worked up, crying, screaming and hitting. Of course this happened when I didn’t let him have his own way as well. I was told that I needed to stand up to him, that I needed to ignore it, but these people hadn’t been there when his meltdown’s kicked off and didn’t seem to understand what I did – it wasn’t a normal tantrum.

The only way to calm him down was to either pick him up and hold him tightly in a rocking motion until he calmed down or by removing him from the location and doing the same.

At these times I felt so inadequate and of course self-doubt crept in – was I babying him too much? Was I validating his behaviour? Did I need to just ignore it and let him wear himself out?

The last one I can tell you did not work. 

I trialed it for a month. Every time he would start to break down I would just let him go as we carried on with our day, this resulted in some days where he would become even more aggressive, even more upset and would go for hour after hour without letting up until he finally fell asleep, when he woke up he would still keep going.

It wasn’t until he started at Young Preschool and Kindergarten that my intuition was validated.

I still remember clearly Lyn pulling me aside and discussing the possibility that he would benefit from a referral to Early Intervention as they had some concerns about his behaviour.

The day we met with Tina Whitechurch and the team at Early Intervention was the day that changed my life. 

They assessed him, organised for him to see an Occupational Therapist once a week, we attended playgroup and eventually he did two years of school preparation at the centre. It was also thanks to Tina and the team that we finally got our diagnosis.

After a shocking encounter with a pediatrician in Canberra that left me feeling as though everything to do with his behaviours was my fault despite very detailed letters and reports from the staff at Early Intervention and Young Preschool and Kindergarten stating the opposite. 

Tina and her team as well as Young Preschool all jumped on board and helped me fight for my son. It was then that I learnt how to be an advocate for him and how to get him what he needed.

He was referred to a group of doctors based out of Goulburn. The group travels around the region and spends two days with children assessing them before they hand down a diagnosis. The group consists of a speech pathologist, a child psychologist, a pediatrician and an occupational therapist. It wasn’t only my child that was assessed in those two days though, it was me too.

In the end he was diagnosed as high-functioning autism – which meant that he is on the spectrum but can function on what society sees as a normal level with some work – he was also diagnosed as having sensory issues as well as poor fine motor skills. But just as I thought that my battle with the diagnosis had ended, the battle for myself had just begun.

Between the CISTS team and Early Intervention there was already so much I had learned about autism, not to mention my own extended family’s association with it. But once the diagnosis was through I armed myself with knowledge. 

I studied websites, joined forums, read books. I wasn’t working at the time so I made my work all about my son and making sure he was able to function in society.

It wasn’t until he began attending school that I was able to return to work. It was also then that I knew I needed to do something for myself. I needed another outlet so I wasn’t smothering him constantly, I needed to trust that the skills we had given him would guide him through.

Sure we aren’t your typical autism family and we still have our moments and our ups and downs, but this is our story and I will treasure it as much as I treasure my gorgeous little boy and his cheeky smile.