COMMUNITY eNEWSLETTER

When George was 18 months, I knew there was something up, he didn’t respond to his name, wasn’t talking and wasn’t meeting any of the milestones I had come to know with our daughter Eadie who is 3 years older.

Whilst I had no idea what was in store for us, I did what any parent would do and sought medical advice. First up was a hearing test which always gets me when I think back. If you’ve experienced a newborn hearing test in the hospital, you may remember the brief two minutes when you sit there praying your child will pass, and if all else is well, go on to lead a normal healthy life.

Fast forward 18 months and as I’m sitting in the waiting room for George’s hearing test, I’m now praying he would fail, because I had doctor googled for weeks in the lead up to this appointment and knew that if his hearing was perfect, the prognosis was not hearing impaired, he was Autistic.

George passed his hearing test with flying colours, perfect hearing, and that’s when the journey really began.

George was diagnosed with Autism at 2 years old. After a mere 5 mins with his paediatrician, she told me George was Autistic and then I can’t remember much more after that. But thankfully she has a great secretary who sent me the notes on everything I needed to do next – early intervention was key.

At this stage we were still very naïve and didn’t even really understand what Autism was because anyone we knew that was Autistic was high functioning – like The Good Doctor TV series.

We thought if we could get George all the early intervention he needs, he would start to thrive, even catch up with all the other kids his age. Never in my wildest dreams did I think that my son may never talk, never say his name, never call me Mum, never live an independent life.

I couldn’t even say George was Autistic out loud without bursting into tears. I wouldn’t let people refer to George as Autistic and instead would say George has Autism – because I thought saying George was Autistic was labelling him and that was all he would ever be.

By the time George was 2 ½ years old, despite lots of therapy the wheels were starting to fall off. George was getting older and his inability to communicate and comprehend was leading to immense frustration that led to him acting out physically and coupled with all his additional sensory needs, meant that George was not suited to the mainstream daycare setting he attended, and so the onslaught of daily phone calls began.

His daycare didn’t want him there because they couldn’t handle him. They stopped his therapists going in because it was too disruptive to the neurotypical children when George was getting 1:1 therapy. We felt ridden with guilt every morning when we dropped him off, knowing we were sending our son into an environment where they didn’t want him and I’m sure if he could tell us, he didn’t want to be.

These were dark times and the realisation that George was not going to lead a normal life began to sink in. But amongst all this chaos and heartbreak – there was a silver lining!

When George was 3½ years old, we started looking at primary school options. I was googling schools for Autistic children when I came across Giant Steps. I distinctly remember watching a video on their Facebook page that started with ‘Living with Autism is Relentless’, and I knew we’d found our north star.

The video went on to say lots of amazing things about the individualised support they provided to Autistic kids but ‘relentless’ just connected – because I’d never heard anyone say that out loud, let alone have it as an opening line on the school video!

We know that being a parent to George is far easier than the life our Georgie is having to live. We’d trade places with him in a heartbeat if we could, but it was just so good to feel understood because some days no matter how hard we try as parents, it’s just – relentless!

When we toured Giant Steps, it was so apparent the staff knew the life we’d been living, if you arrive late because you have been up all night with your child, they get it.

If your child throws a tantrum because you don’t take them out of the car the same way you did yesterday, they get it.

If they physically lash out at the educators because they are frustrated they can’t communicate what they want, that’s ok, they get it.

If they refuse to eat anything but dry white food, they get it.

But more importantly, the love and devotion to education and development of life skills for Autistic kids shone through. Every teacher is there because they want to be there, and they love the kids and want to create a brighter future for them.

Once we found out Giant Steps had an Early Years program it was like we had just won the lottery, or more accurately, we had bought the ticket and hoped we had the winning numbers. George potentially wouldn’t have to wait until he was starting school to attend Giant Steps! But when we were called in for an observation and interview, George, true to form, really let them have it, giving the staff a good old pinch. I came home to Tony and said, “You won’t believe it, he gave the Head of Primary a good pinch, I don’t think that lottery ticket is going to come in”.

Then within weeks, we received a call from the Principal offering George a place.

It was another one of those moments where they just got it.

In February this year, George started in the Early Years Program 3 days a week and we have never been happier. The individualised programs Giant Steps offers are phenomenal. Not to mention the support they offer to the families, including a sibling’s group!

George’s progress since starting at Giant Steps is remarkable. He now uses visuals to comprehend and communicate. George can sit down and participate in group activities, independently use the toilet, has learnt to wait for his turn on swings, can walk around the block without sandbagging on the floor, and most heartwarming of all is seeing him engage more with his brother and sister in play.

George has even started to use a few core words with purpose and true to his character, ‘No’ is his favourite word!

But the best bit is how much George loves Giant Steps. When we show him the visual of Giant Steps he quickly gets ready and as soon as we turn onto the Gladesville bridge, he squeals with delight!

George is thriving and his cheeky personality is shining through. The future is looking up and we can’t wait till next year when George starts school full-time at Giant Steps.

Erin and Tony O’Neill