It was almost two weeks ago that I received the call telling me my son had been approved for National Disability Insurance Scheme (NDIS) funding and a week after that I was walking into my first meeting to discuss Giovanni’s needs. The first thing I noticed as I was led into the room by our case worker was the box of tissues on the table.
Yep, I’d be needing those.
I didn’t need the tissues because I felt sad or overwhelmed. Those feelings were snuffed out long ago by acceptance and appreciation for who Giovanni, eight, is and how lucky I am to have him, autism and all. The reason I’d need the tissues is because finally, I felt like I wasn’t alone. I was now part of a system of government-led professionals whose job it was to help me figure out exactly the services Giovanni needed to access to reach his full potential.
My days of struggling alone are in the past.
Giovanni, 8, has Autism Spectrum Disorder (ASD) and after a confusing year-and-a-half we finally feel on track to help him reach all his goals so he can reach his full potential. Now we have to work on the rest of the world.
While most of Giovanni’s interventions and therapies aim to make his participation in conventional society easier for him and more acceptable for others, it’s also time the world met him halfway.
"It's time the world met him halfway." Image: Supplied.
Whether you are disordered, disabled, have special needs or extra needs, you are still a part of the world and deserve every opportunity neuro-typical kids receive. For me, it’s now all about education.
My family and friends usually know exactly what to say and do when it comes to my beautiful Giovanni and they handle it beautifully. Of course, sometimes they don’t handle it perfectly and gosh, neither do I! But we try and bring Giovanni into our world by gently entering his.
Now I want to share what we have learned with you.
1. He is not his autism.
I detest the use of the word ‘disorder’. I always say, “my son is on the spectrum” or, “Giovanni has autism,” because to me, the word disorder does a disservice to this brilliant, amazing, special and unique little boy. He’s not a disorder. He’s just Giovanni who loves animals and Minecraft and playing endless games of UNO. While being able to put a name on his condition means we know how to help him, I’d never do anything to change who he is. He isn’t in need of a cure and he isn’t in need of a fix.
2. How and why doesn’t matter.
How Giovanni ended up with ASD and why he ended up with ASD doesn’t matter. It just is. There’s been too much focus on the causes (and possible cure) for conditions like autism, which assumes there is something wrong with these kids. It couldn’t be further from the truth. Most parents of children with autism come to realise that their kids are incredibly evolved and have unique gifts, which explains why companies like Google and Microsoft are seeking employees on the spectrum for jobs that require focus and precision.
Companies like Google seek employees on the spectrum for jobs that require precision. Image: Supplied.
3. He won’t look at you but he is listening.
Just because children with special needs and disabilities aren’t looking at you, they are still usually listening, particularly Giovanni. He won’t always respond to what is being said and done around him but later he’ll talk to me about his observations. That means he notices if you say, “hi” to him or try and include him. While he won’t always respond, your willingness to include him is noticed and valued.