I’ve wanted to be an actor ever since I was a small child. I lived inside a world of words, with characters and dialogue swirling around in my head, my mind constantly off in a story somewhere, paying insufficient attention to what my mother or teacher were saying. Invariably I’d cast myself as the female lead in these stories. At school, I wasn’t pretty enough to be the female lead in the school play, or tall enough to be the male lead (it was an all-girls school), so I usually ended up as comic relief. At last, in my final year, I was cast as the female lead, and the highlight of my brief acting career was a glowing review in the North Shore Times. Heady stuff for an 18 year old.
But my parents talked me out of a career in acting, and I ended up in hospitality, which is similar in many ways. An a la carte restaurant is like a theatre. Preparations before the show are intense, the mise en place must be perfect in every detail, there’s that nervous wait before the curtain goes up, the sick, top-of-the-roller-coaster feeling just before service, when you know the owner has overbooked the restaurant (again). We’d say a brief prayer to St Manuel, patron saint of Harassed Waiters. Would tonight be the night everything would fall apart? Would our little team of chefs, waiters, kitchen hands and bar tenders get through this night of turning over 150 covers in an 80 seat restaurant? Who would be in the shit, kitchen or floor?
Then the curtain would go up, and we’d lose ourselves in the drama of the evening’s service, finally being spat out at the other end, damp and exhilarated. The beers that’d been in the ice machine since 10PM would disappear down a dozen thirsty gullets at speed. We’d trade war stories with good humour, relieved it was over for another night. On Saturday night we’d pile into cabs and head for the Cross to hit the bars, the weeks’ pay disappearing in one night. Sunday morning we’d wake with sore heads and fish around in last night’s jeans for a stray tenner to take up the pub, then get up Monday morning and do it all again.
Not unlike an actor’s life I reckon!
In reality, the acting skills (such as they are) that I picked up in high school plays and amateur theatre companies have come in very handy in my career as a mother of children with special needs. All parents play roles. You discover very early on that you have absolutely no clue what to do in many situations, so you just have to pretend. This works a treat early on, but tends to become slightly unravelled once your kids are old enough to say, “But Dad, why do I have to go to bed? Caleb’s Mum and Dad let him stay up til 10 o’clock!”
With Happy Chin, we had to make up pretty much h everything as we went along.
The first role I learned to play as his mother was Pollyanna, because I believed for at least the first 5 years that everything would turn out for the best, all by itself and with no help from me. This foolish optimism probably got me through the early years actually.
Gradually I learned to be the Canny Player of the System. To the new respite service provider I said, ‘His gross motor and receptive language skills are excellent.’ To the funding provider it was, ‘He really struggles with verbal communication and needs lots of support to participate in activities.’
As special needs mum I was also expected to be Omniscient Woman. Some of the things I have been asked and expected to know include: what do you do when he bites/pulls hair/refuses to get into the pool/refuses to get out of the pool/throws his lunch across the room/persistently wets himself and laughs about it? As I have 2 other children, I was also expected to know where everyone’s bus pass was, what days the canteen was open and what their brother had done with their blue beanie (usually he’d taken it to bed with him and wee’d on it).
I’m pretty used to playing The Referee (see The Hat Police, May 2018), fielding complaints such as ‘he took the books out of my room and threw them on the roof, those are my underpants, he ate ALL of the biscuits, why do you treat him differently to me, he gets away with everything!’
Sometimes we have to be champions for our special needs children. One of my oldest friends has 3 children with Fragile X syndrome. She was telling me a story about the time she went in to bat for her son after they received blatantly unfair treatment from one of the children’s hospitals due to a ludicrous government policy.
‘Anyway,’ she said, ‘I was standing in the Prime Minister’s office and I told him…’
‘Wait, you were in the Prime Minister’s office?’
‘Yes, of course,’ she said. “I know how to work my contacts.’
I won’t name her for privacy reasons, we’ll just call her Xena Warrior Princess.
(She got the unfair hospital policy overturned by the way).
My friend Xena is a personal hero of mine. Warrior Princess isn’t a role I am comfortable with. But sometimes you just have to woman up. Like the time Happy Chin was 3 and in hospital with mastoiditis (a really nasty ear infection that extends into the skull). He’d been admitted with a high fever and spent 3 days screaming in pain, only stopping when he fell asleep, too exhausted to cry any more. The antibiotics weren’t working and it was impossible to get a cannula into his feverish sunken veins. After 4 attempts by doctors I was ready to stick a needle into them a see how they liked it. They left the room saying they’d be back in 10 minutes to have another go.
I promptly burst into tears.
I know, I know! Michelle Obama would never have burst into tears.
The nurse took the opportunity in the doctors’ absence to advise me in no uncertain terms to pull myself together and stand up for my child, and she told me how to go about it (I wish I could remember her name, she was awesome).
So with hands shaking, I summoned my inner Ellen Ripley and when the doctors returned said, ‘there is no way you are going near my child again with that needle. You need to get him to theatre, put him under and put a long line in his neck.’
The nurse stood behind the doctors and pumped the air with her fist. Fair to say it was a shared victory, because they took him to theatre and intubated him, got the antibiotics into the line and we were out 4 days later.
Standing up to the medical profession is hard sometimes, but for me the hardest role to play is the Person Who is Coping Splendidly. This is the face we put on for the wider world every day when we go out to work, where we don’t want to horrify our co-workers with tales from the frontline. Sometimes we put it on for our friends and family because we don’t want them to worry. We tell our other children, ‘Mummy’s alright, just a bit tired.’ We tell them everything is going to be alright, but it isn’t always going to be that way. In fact, everything is going to be really crappy sometimes.
I cope with this by compartmentalising my life. It’s not possible to be Organised Woman who has it together 24/7, so I save this one for professional situations, and I have a trusted group of co-workers I can vent to when it all gets a bit much. Organised Woman also attends NDIS planning meetings and most medical appointments (except our lovely GP of many years, with whom I can revert to Woman on the Verge of a Nervous Breakdown).
Of course, it’s important to schedule in regular time just to be Yourself. Otherwise you might forget who you are, what with all of those hats you have to wear. I do this at 5.30 in the morning before everyone gets up. No hat is required, just a pot of tea and a good book. On the whole I think I like this role the best. There’s no time spent in hair and make up for one thing. I’ll probably never win an Academy Award for it, but maybe I’ll get a review in this year’s Mother’s Day card.