I don’t want to sound like I’m sprinkling fairy dust all over my son Giovanni, 8, and his autism. Yes he’s adorable, his quirks strangely endearing, rare moments of proper eye contact like finding a pot of gold at the end of a rainbow. I love how he eats only chocolate ice-cream with chocolate topping and chocolate sprinkles, but they have to be assembled just so.
It’s so cute when he says, “You really love me, Mum”, instead of telling me he loves me.
I’ve even grown fond of the minutes it takes to get the water temperature of his shower just right each day. He’s like Goldilocks when it comes to shower water temperature. Not too hot, not too cold…just right.
But it’s also really, really, really hard. It’s mentally draining, physically challenging and financially crippling. Several times a day I wonder if I’m doing everything that he needs, if there’s more I could do, if I can afford it all, whether he’ll ever get to a place where he can enjoy a “normal life”. Not to mention my life. When will I get to enjoy a normal life?
Author Kathy Lette on why we need to change how we view autsim. Article continues afer this video.
He catches the bus home and sits quietly, playing on his iPod, happy not to talk to anyone, to not engage. Then some of the boys throw water at him and laugh at him. I see him stumbling off the bus and collapsing into my arms sobbing, shut down, checked out, shocked, confused unable to understand why they did it. He just can’t comprehend it let alone defend himself.
“Why did they do that Mum?’
My heart hurts. My stomach and my head. Maybe I’ll start catching the bus to and from school with him, start driving him, teach him self-defence, make his brother sit with him. But there’s my job to consider, and my son who has his own friends, and knowing that we won’t always be there to help him.
He has so many appointments, they are very expensive and my husband is working two jobs to pay for them all. We never see each other. Sometimes we go for days without even hugging each other. And now a kick to the stomach I wasn’t expecting. The service that was meant to be our saviour, the National Disability Insurance Scheme (NDIS) is failing us. Reports of lack of funding, problems rolling it out, inexperienced workers making poor choices on behalf of special needs kids.
My medicare funding ran out months ago.
My private health funding was pathetically little and ran out in weeks.
And still at the end of all of this is a beautiful little boy who just needs help, and an overwhelmed mother who just wants to help him. But there are no support services for me and even if there were, I couldn’t afford the cost on top of his treatment.
That’s when I turn to my special-needs-parent friends who get me through every difficult moment, hour, day and week. We are each other’s saviours, even when we just cross paths for a few minutes while ferrying our children to various appointments or reach out on Facebook.