It’s been 553 days since my son Giovanni, 8 was diagnosed with Autism Spectrum Disorder (ASD). Have I mentioned how much I DETEST the word “disorder” being associated with my son? It bothers me more than the word “autism” does because it suggests that there is something wrong with him.
After 553 soul-searching days of ups, downs, tears, laughter and endless support from special needs parents I’ve never even met, and some I have met who are now some of my best friends, I no longer feel autism is a disorder.
Christmas is one of the hardest times of the year for parents of special needs children for a variety of reasons. For me it’s because the season involves so many crowds and get-togethers and elaborate meals and many other things Giovanni has trouble coping with.
Yes it’s hard to be a person with autism – for those who have been diagnosed with it and those caring for people who have been diagnosed with it – but only because of the way in which modern life is structured.
Our lives are governed by endless constraints, schedules, time-limits, rules of acceptable behaviour, measures of success not to mention constant judgments of us as parents and as people.
God-forbid we don’t act “normal”.
God-forbid our children don’t act “normal”.
God-forbid we don’t get a job, pay bills, rush around and become “productive members of society”, a society that’s rules and regulations we had no say in establishing.
If we could just allow people to chose how they live their lives and give them the physical and mental space in which to do this, we wouldn’t spend so much of our time raising our children to be slightly different versions of each other.
They can be who they were meant to be.
Giovanni doesn’t like parties, so why should he be forced to go to them?
Giovanni doesn’t understand verbal instructions, so why is he forced to participate in an education system that relies on teaching via verbal instructions?
Giovanni doesn’t like to eat too many different foods, so why should he be pressured to try them?
Giovanni doesn’t like it when people he hardly knows touch him or kiss him or hug him, so why should he have to put up with it?
And instead of us, the so-called “normal” people or as they are referred to now, the “neuro-typical” people focusing treatment and education and medications designed to produce a child that can do all of the above, why can’t we just figure out a way Giovanni can carve out his own unique space in civilised society, without judgment.
True, he might stare at you on bus or fail to make any eye-contact at all while buying a drink from you, but instead of you automatically assuming he is “weird” or “mental” or “wrong in the head”, maybe you’ll think, He may have autism, or, There may be a reason other than rudeness influencing his behaviour.
He may be on the autism spectrum…
He may have mental health issues…
He may have just received devastating news…
He may be just like anyone else, despite his diagnosis, just doing his best to get through each day. His difference doesn’t make him of any less value or dangerous.
I’m not sure exactly what I’m trying to say and fellow special needs parents reading this can probably relate to that. There are days I want him to be “normal”, where I want him to be able to walk to the front of his class and receive an award or pick up an apple and just bite the damn thing.
But he doesn’t do any of those things and probably never will.
Every day I make the choice to accept my son EXACTLY the way he is and my goal as his mum is to help him figure out a place in the world in which he is safe, happy and comfortable.
It will look very different from the safe, happy and comfortable place my two other children Philip, 12 and Caterina, 7 will make for themselves, but it won’t be of any less value.
And I’ll be no less proud of him for getting there.
To find out more about Autism Spectrum Disorder visit Autism Awareness Australia.
If you or someone you know suffers from mental health issues contact Lifeline on 13 11 14.