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.
I know that at any time of the day when I JUST CAN’T COPE ANYMORE all I have to do is send an SOS text to my closest special needs parent friend Katherine to let her know that I am struggling. I know that she will call me or send the perfect text or sometimes, picture, that has me cracking up laughing, wiping away the tears and feeling good again, feeling understood.
She gets me. I get her. Our new favourite word is “nope”.
Just “nope”.
It's what we say to each other when we are just over it.
Sometime she just brings scones. Sometimes she just joins me for tea.
Like the day I received a letter from Medicare saying I'd "reached my Medicare threshold", Yay, and would now get more back each time I made a claim, closely followed by another letter from Medicare telling me that I wouldn't be receiving any more money for Giovanni's occupational therapy because he'd reached a cap. I didn't even know there was a cap. I knew there would be a gap to pay but I stupidly assumed a portion of his visits would be covered each time, forever.
Or the day I received a letter from my private health fund telling me that the $500 they'd give me to help pay for Giovanni's treatment had also been reached.
Or when I found out Giovanni had gotten into trouble at school for not participating in sport, except it was a complicated sport he didn't understand and nobody bothered to explain it to him.
With just a simple text or picture from a friend, I feel like I can keep on going and go through it all again tomorrow.
Tomorrow is another day.
Being a special needs parent is tough, isolating and incredibly challenging, and yet there are no formal support services for those parents and families. It's time we questioned why.
Why, as a caring and prosperous nation, have we not yet figured out how to look after each other?
And it's not just about the money. The financial issues are of great concern. They always have been for special needs families. Having to come up with tens of thousands of dollars a year to help your child reach their full potential is hard when your child is neuro-typical, let alone special needs.
Then there's the guilt. Did I cause this?
And the doubt. Am I doing the right things for him?
Also, the naysayers. "He's fine. Have you tried removing gluten and dairy from his diet?"
There's always one parent the financial burden tends to fall on - in my case my husband - and then another on whom the logistical burden falls on - that would be me - but the emotional burden is felt equally. It's not my son who is a burden. He is amazing, loving, smart and so much fun. Being able to help him deal with his issues, knowing how to snap him out of a funk or support him during certain tasks is a blessing.
But at night when they are all asleep the stress creeps in, the doubt, the insecurity, the guilt and sometimes my husband and I even turn on each other. "You wouldn't even let me get him assessed at first. It's your fault his treatment was delayed."
Then the hugging and the crying, but we don't have much time for self-pity. My husband is off to work again and I have to take Giovanni to another occupational therapy session. Or sit with him during his swimming lesson. Or accompany him to a birthday party he won't participate in.
And then, and then. It's endless. That's when I can turn to my special needs parent friends. Thank God for them.
Australia is a beautiful and amazing country with a massive mental health problem, a disability insurance scheme that is a problematic mess, a stretched economy that limits how much Medicare funding is available and a completely broken private health insurance system that fails to offer proper support to families lucky enough to be able to afford it.
Giovanni is no longer covered for autism treatment by either Medicare or our private health and now it seems that NDIS is, for so many families, just a funding fantasy that seemed within reach, but isn't any longer.
I don't know what the solutions are. It seems nobody does. Some people think they know but then it turns out to be more complicated and convoluted and expensive than they expected it to be. So it gets delayed and stalled and rolled out badly, ineptly, terribly. And in the middle of all these bureaucratic storms are special needs parents and their children who face more challenges than most but still get up day after day and do it all again.
From the doctor who first gave me the referral to the psychologist who diagnosed him and the occupational therapist who devoted herself to him to the speech therapist who helped me plan his care to my amazing husband my special needs parents as just as critical to helping Giovanni and me get through this. And I bloodly love you all!
When I was younger I always thought mental health issues and disability services issues were sad and unfortunate, but nothing to do with me. When you get older though, you soon realise that these issues have everything to do with everyone and it's just a matter of time before they have a lot to do with you.
A family whose daughter almost drowns but thankfully survives, only to be left with a brain injury.
A parent who has a car accident and loses use of their legs.
A sister, brother or cousin who has a special needs child you see at every family function and you don't know what to do, what to say, how to approach them let alone their child. They look like they aren't really all there, but I'll bet you they are. Just because they can't look at you or turn their heads towards you, doesn't mean they aren't wondering why nobody is talking to them or trying to say "hello" to them.
We talk and talk and talk about so many things every day and yet we don't discuss enough the challenges we each face. We don't want to complain. We don't want to burden others. Except it's not a burden, it's a blessing. If sharing your challenges with me makes you feel a bit better, like you are not alone, like we are in this together, then talk to me. And I'll talk to you. Even if it is just to complain and swap funny memes. Just a bit of "nope".
Because the systems and processes will never be perfect and the amount of paperwork we need to fill in and hoops we need to jump through will always be ridiculous and our worries will always be there, but at least we can laugh and cry about it together.
The trick is to avoid laughing and crying about it alone.