The next day’s a school day, so everything’s a rush. I’m in the shower, with Dad standing at the shower door, holding my hands to make sure I don’t slip, while Mum reaches past him to wash my hair. The rose shampoo tastes like perfume. The groaning pipes fry my ears. The smell of wet skin, the stinging water …

I squeeze my eyes tight.

Don’t scream, don’t scream, don’t scream.

Mum and Dad are soaked by the time they help me out. The towel scrapes like sandpaper and my arms hurt as Mum pulls them through the sleeves of my school shirt.

Don’t scream, don’t scream, don’t scream.

I try to concentrate hard on the bird pictures in our bathroom – animals in my bedroom, birds in the bathroom – and I clamp my lips together.

Don’t scream.

I shove my fist into my mouth. But it doesn’t work. A massive scream bounces off the bathroom walls. Mum ignores it, tugging up the legs of my track pants while I hang on tight to Dad’s hands. Once my pants are on, Dad sits me on a nearby stool to finish dressing me, while Mum goes to get my breakfast ready.

‘I know, I know. You’re hungry,’ Dad says.

No! I’m NOT hungry.

Suddenly I’m like a toddler having a meltdown in the supermarket. I don’t mean to lash out. It’s just … sometimes the frustration is so strong my arms and legs do things I’m not expecting.

‘Mum will get your brekkie soon,’ Dad says gently, catching my arms as they try to hit him, ‘and then we’ll get you off to school.’ He scrunches up his nose and pulls a funny face.

I don’t smile. It’s not about brekkie. It’s not even about the shower.

I don’t want to go to school.

But Dad doesn’t understand. He starts singing silly songs as he pushes a sneaker onto my left foot. ‘Nobody loves me, everybody hates me, I’m going to eat some worms,’ he warbles. ‘Fat ones, skinny ones, little bitty itty ones …’

Dad can’t sing. Not for nuts. But I don’t laugh. Not today. My regular teacher, Hayley, left to have a baby last term, and the stand-in teacher doesn’t understand me.

I don’t want to go to school.

Dad changes his cheery tune. ‘This old man, he played one, he played … Hey!’

I’ve kicked. Hard. My sneaker’s gone flying across the room. But Dad’s practised at not reacting, and keeps singing. ‘He played knick-knack on my drum …’ He calmly pushes the other sneaker onto my right foot.

Don’t make me go to school, Dad. Have you even seen the time-out room? It’s the worst place in the school.

He’s lacing my shoes up while I try to headbutt him, but he knows how to avoid me, and finally both shoes are on. He’s half-humming another silly song as he leads me to the kitchen, and part of me wishes he’d just shout. If he and Mum slammed doors and yelled like Nic, then maybe I could yell back, and then we’d be even. But when they’re being nice and patient, it just makes me feel worse.

Sorry, Mum. Sorry, Dad.

Mum’s already got my toast on a plate when Dad helps me onto a chair. ‘Hey, Ava,’ Mum says. ‘Vegemite or peanut butter?’

Funny how she always asks.

Jam, please.

But she spreads my toast with Vegemite. Like always.

Part of Rett is that my muscles, even my swallowing muscles, are weak. When I can’t swallow my food, I choke – a lot – so Mum and Dad take turns to watch me while I eat.

It’s Mum’s turn now, while Dad has a shower, and this morning I try extra hard to swallow without choking. There’s enough tension in the house today.

‘Nicole, we’re leaving in ten minutes,’ Mum yells down the hallway. ‘We need to go as soon as Ava’s taxi arrives.’

Nic finally wanders into the kitchen, yawning as she texts. Her hair’s unbrushed and she’s got on a crumpled school shirt.

‘Looking a little sloppy there, Nic,’ Mum says. ‘Didn’t Dad just do the ironing?’

Nic glares at me from under her curls. ‘Why don’t you talk to Ava about being sloppy?’ she mutters.

I don’t have to look to know my dribble is making wet patches down the front of my red school shirt.

‘What’s up?’ Dad’s fresh and clean, wearing his black Air-Conditioning Solutions work shirt, and smelling of tangy men’s deodorant.

Mum points to Nic and raises her brows.

‘Do your mother a favour,’ Dad says. ‘There’s an ironed uniform in the laundry.’

Nic pulls a face, but disappears down the hall.

‘Thanks, hon,’ Mum says, running a hand through her hair. ‘I’m not in the mood for drama. I’m sending those plans off for the Byron houses this morning …’ She pauses while Dad kisses the top of my head. ‘Goodness knows how many hours I’ve spent on them. I’ll be glad to see them go.’

While Dad spends his days fixing people’s air con, Mum designs fancy houses. When they couldn’t get me after-school care, they asked our neighbour Henry to help build an office in our garage, making a space for Mum’s desk and printer where the lawn mower used to be. Mum designs all sorts of new buildings in her garage office while I’m at school, so someone’s always here when I get home.

‘And they’ll be brilliant,’ says Dad. ‘As always. Have a good day, guys. Bye, Ava.’

Bye, Dad.

Dad’s work ute roars off just as Nic reappears in the kitchen. She’s wearing the ironed uniform and her hair’s been pulled back into a messy bun with two long strands hanging around her face, like she just got out of bed. Perhaps that’s the look she’s going for.

Mum doesn’t comment on the hairdo. ‘Hurry, honey, go get your bag. The taxi’s nearly here.’ Mum grabs her car keys and handbag, and helps me into my wheelchair just as my maxi taxi pulls into the driveway.

‘Perfect timing,’ Mum says as she steers me towards the taxi’s lowered wheelchair ramp. ‘Morning, Sam. Thank you. See you, Ava.’

The kids in my school arrive either by bus or by taxi, so the parents have no way of finding out how deadly boring school is. I tried taking the bus, but the smell of the diesel fumes and the thud of the engine made me vomit. Now Sam comes to drive me, taking me in my wheelchair and loading me via his special ramp. While Mum and Dad only use my chair when it’s too far for me to walk, the teachers at school are worried I’ll fall, so they keep me firmly strapped in at all times.

‘How’s it going, porcupine?’ Sam asks. ‘Another day in paradise?’

I wish.

Sam ran a kebab bar back in Greece, but here in Australia he’s an approved taxi driver for people with a disability. I’m glad he’s my driver. He sings along to 70s music in his cab, and unlike Dad, Sam’s singing is pretty good. But I don’t care about singing today. I need to talk about Nic, and how I’m sorry that I screamed at her concert. And about Mum and Dad, and how hard it is for them to look after me.

But of course I can’t. When Sam looks in the rear-vision mirror, he sees what he always sees: a crumpled, twisted kid with a head that struggles to stay upright. He sees hands that won’t stop clasping, and long threads of drool staining a red school shirt. So Sam keeps driving, tapping his fingers to the music and complaining about the traffic. Like he does every school day. Like absolutely nothing is wrong.

Except absolutely everything is.

By the time we get to school, my lungs are heaving and my vocal cords are primed. If I can’t talk, then I’ll scream. Scream and scream and scream the whole place down.

But then I spy Wendy, our stand-in teacher, at the gates. She has short, army-style hair and stands with her hands on her hips, making the muscles on her arms pop out.

Sergeant Major Wendy.

Her voice punches over the throb of buses waiting to unload. ‘I’ll take Ava,’ she bellows as Sam lowers me down on his ramp.

My stomach swirls.

Squish, clap, clench.

I don’t want you to be our teacher. I want Hayley back.

But I’m helpless in my wheelchair – the classic sitting duck. If only I could unclasp my hands and wheel myself away.

That’s not going to happen.

Instead, I grimace on the inside as Wendy marches my chair down to our classroom.

Brandon’s pacing the floor when we get there, his sound-cancelling headphones firmly on his ears. He flaps his hands in front of his face, like his tongue is on fire, while Derek sits at his desk, saying, ‘Yes, please’ to everything. Freya’s white-blue eyes just stare blankly at the ceiling.

No-one’s in the time-out room. Not yet.

‘Sit down, thank you, Brandon,’ says Wendy, her voice too loud. Our classroom is a jumble of pictures and crazy paintings, with anything breakable placed up high. The lights are too bright, the carpet too swirly, and the air too thick with the smell of antibacterial wipes.

Wendy locks the classroom door so Brandon can’t escape, and then sits on a small stool with wheels, skidding over to show us each a laminated card. The stool’s wheels roll like thunder over the lino.

The first card has a black-and-white picture of a stick-figure person waving their hand. It looks sort of like the ‘men’ or ‘women’ symbols you see on toilet doors, except instead of the person having their two arms stuck out straight, one hand is raised and waving.

‘Hello!’ belts out Wendy. ‘Hello, everyone. What do you say, Brandon?’

Brandon takes the card and gives it back to her.

‘That’s right, Brandon. Hello.’ Wendy gives him a lolly.

‘Yes, please,’ says Derek.

The cards are coming closer. My twisted fingers won’t unclench.

‘How about you, Ava? Hello, Ava. How are you today? Happy?’ She’s showing me a card with a yellow smiley face. Wendy’s morning coffee is stale on her breath. ‘Use your words. Ha-ppy, Ava?’ repeats Wendy, pushing the card close to my face.

I’m not blind.

Hayley, our regular teacher, understood that I couldn’t unclasp my hands. She never made me pick up things, and would talk in a quiet singsong voice. Hayley tried different ways of helping me, even borrowing a Dynavox, a heavy white box with a screen showing lots of symbols. She spent ages loading the Dynavox with different pictures and pages, but the screen needed to be pressed, something my twisted fingers couldn’t do.

So Hayley returned it, and told me not to worry. She said that one day there’d be a better way, but in the meantime we’d just have to make do.

But Wendy’s nothing like Hayley. She doesn’t understand about my useless hands. She keeps shoving the card closer and closer. My arms throb – I can’t move them. A strangled scream escapes.

‘I see. In one of our moods today, are we?’ barks Wendy. ‘Let’s try Derek. Good morning, Derek. How are you?’ She waves the ‘happy’ card in front of Derek. He grabs it and gives it back to her. ‘Yes, please,’ he says.

Wendy erupts. ‘Well done, Derek. Good talking, Derek!’ She pushes a lolly into his outstretched hand, and keeps going around our group.

Everyone except me gets a lolly.

We move on to a storytime session, with lots more card-waving and squealing from Wendy.

None of the cards show anything I want to say. Who cares what colour the lion is in the Dear Zoo book? Who cares where the monkey is? I, for one, want a proper book, not one for toddlers. And two, I need proper cards that say useful things like, ‘Nic, I wish I were a better sister’ and ‘Mum and Dad, I’m sorry I’m so much work’.

But cards like that don’t exist.

Don’t scream, don’t scream, don’t scream.

I don’t want to go in the time-out room. So, instead, I sag in my chair, hot tears welling in my eyes.

I’ll never be able to say what I want to say.

After school that afternoon, Nic tells Mum that she’s organised a sleepover for the weekend. Mum’s only half-listening, concentrating on reading my communication book from school.

‘Mum!’ Nic repeats. ‘Can Ava go to Henry’s on the weekend?’

Our neighbour Henry and his wife used to look after me when Mum and Dad got stuck. But Henry’s wife died a few months ago, and Henry’s too frail to care for me on his own.

Mum’s frowning at something Wendy’s written in my communication book, presumably about the cards and me not participating in class.

‘Mum?’

Mum sighs and closes the book. ‘Nic, Ava’s your sister. Your friends can still come over while she’s home.’

Nic rolls her eyes. ‘Yeah right,’ she mutters.

‘How about Dad and I feed Ava dinner while you and your friends watch a movie?’ Mum suggests. ‘We’ll be out of your way and by the time you’re done, she’ll be all tucked up in bed.’

Bedtime straight after dinner? I’m not five, Mum!

Nic agrees and the sleepover is on.

The following Saturday, I watch all of Happy Feet, and then Finding Nemo, while Mum and Dad prepare the house for Nic’s friends. I’ve watched each of these movies at least a thousand times, but it’s not like I can sit Mum and Dad down and say, ‘Stop treating me like a baby.’

Mel’s been Nic’s best friend forever, so she knows about me, but Nic’s invited two other girls and is eager to impress them. She wants any sign of me to be hidden – every surface wiped and disinfected in case I’ve dribbled on it.

I’m not contagious.

When the Finding Nemo credits roll, Dad comes in and turns off the TV. He smells vaguely of bleach and he’s holding a bottle of Windex and a dirty rag. ‘You have to be good tonight, okay? Your sister … well … you know how she is lately.’

I’d nod if I could, but I can’t. Instead, I will myself to behave. I won’t let you down, Nic. Not this time, I promise.