I wish I could tell him about Rosie’s Cottage, my pink nail polish and smiles over raspberry Slurpees. But I can’t. Because I’m not like Aimee. I have no way to express my words.
I think I may have found a way when, at school, our art teacher Dan plops our fingers into paint. He helps us moosh gooey colours onto butcher’s paper, and although most of the paint ends up on my arms and chin from my clasping hands, some of it reaches the page. The pink makes triangles like the butterflies on the quilt at respite, and the cream and orange look a little like Aimee’s face. She’s smiling, and seeing her makes me happy. When Dan hangs my painting out to dry, I glance at it a hundred times.
One day I’ll talk like Aimee.
One day I’ll find a way.
We’re up early the following morning. A specialist is coming to see Dad today, so Mum’s keen to get me off to school.
Except when she tries to help me into the bathroom to shower me, she sees I can’t go anywhere today. I’m floppy and my feet and hands are soaked with sweat.
Mum paces beside me as I slouch down onto the dining chair. ‘Never mind,’ she says, trying to figure out what to do. ‘It’ll be okay. Don’t stress.’
My floppy days just come out of the blue. My back aches more than normal, and my knees wobble and shake. I can’t eat because my throat muscles are too weak to swallow.
‘What about that respite house?’ suggests Nic. ‘You said Ava liked it there.’
See Aimee again? Even with limp muscles, my heart skips.
Mum shakes her head. ‘Rosie’s Cottage is booked out for months.’
‘What about—’
‘I’m okay, Nic. I’ll work something out.’ Mum smiles. ‘Thanks for thinking of me, though.’
She rings Mel’s mum to organise a lift for Nic, then calls the hospital to explain she won’t be in. Once she’s hung up, she stares at the screen on her phone for a while before tapping out another number.
When that call picks up, she’s asked to make choices from a menu. She listens to the options, then presses one on her phone screen. She listens again and then chooses two, until after five different choices, she’s put on hold. She flicks the phone to speaker while she waits, and the shrill ‘on hold’ music nearly makes me spew. Whoever she’s rung must want her to hang up.
Someone finally answers. ‘Hello, Disability Services, how can I help?’
Disability Services?
Don’t scream, don’t scream, don’t scream.
Mum grabs the phone and turns it off speaker.
‘Yes, hi, it’s Deb Mills here … I’m ringing about my …. Oh, I’m not sure … Yes, that’s right … Yes, my daughter has Rett … No, not Retts, there’s no “s” … Um, no, we haven’t registered before … Well, I usually work full-time, but I …’
There’s a pause. I sit very still as Mum listens to the person on the other end.
What are they saying?
It must be bad. Because the longer she listens, the more severe her chook-bum face gets. ‘But I need help now,’ she argues. ‘I’m caring for my daughter and my husband’s had a stroke. I’m burning through our savings and I need … Yes, uh huh. I have a teenage daughter, but surely …? Yes, I’ll hold.’
Mum puts the kettle on while she waits. She’s made her cup of tea by the time another person comes on the line.
‘Yes, my daughter needs full support,’ Mum explains again. ‘Toileting, dressing, feeding … Yes. Special school … Excuse me? No, we don’t get any funding for carers. That’s the reason I’ve called.’
She’s put on hold again, and this time manages to drink her whole cup of tea and wash the few plates in the sink before the phone is answered again.
‘Well, if you could email me the forms, then yes, of course I’ll fill them in,’ says Mum. ‘But what did you say about the waiting list? Six months, maybe more? Just for for an assessment? But I need help—’
The person on the other end must be talking very fast because Mum nods her head, a lot, and then says, ‘Really? Okay, well, thank you. Goodbye.’
Mum’s hands are shaking when she finally hangs up. She thumps down onto a chair beside me and takes several trembling breaths.
My heart is heavy. Poor Mum.
‘Honestly,’ she murmurs. ‘Who do they think they are?’
She sighs a very long sigh before going down the hall to her bedroom. The smell of burning vanilla candles reaches me about the same time as the opening bars of a familiar song.
Norah Jones – again? Singing about running away to a mountaintop? Things are worse than I thought.
When Mum returns to the kitchen, she opens a tin of condensed milk and sits next to me, spooning dollops into her mouth while Norah Jones sings in the background.
My throat is tight with worry. I click and clack with my tongue, trying to get Mum’s attention. But she’s miles away, dreaming of a mountaintop, like she’s already planning to move there. I guess I can’t really blame her.
I wish I could help you, Mum.
By Wednesday, my floppy day is over and our class arrives at swimming to find an aqua aerobics session taking up the far end of the pool. Some of the attendees are Henry’s age, but their instructor is young and fit, leaping up and down like a gazelle on the concrete by the side of the pool. The people in the water are not gazelles – more like hippos. They have red faces and flappy arms that jiggle as they jump. But their laughter and chatter carry across the water, and I wonder if Henry ever comes here. It’d be nice for Henry to make some friends – he’s been so lonely since his wife died. Thinking about Henry makes me fidget. Henry and me in the car, combing the streets for Nic. Henry, Nic and me at the hosptital, frantically searching for Dad.
Hurry up, please. I want to get in the pool.
I need to get in the pool. To sink my ears below the water and shut out all the sounds. To pretend I didn’t hear Mum begging Disability Services for help. I need to float away to a dreamland, to a place where Dad isn’t sick.
But it feels like forever before the ladies finally start their warm-down stretches. A group of students walk in. I recognise their green-and-white-checked uniform. They don’t stop by the pool and instead take their gym bags towards the back of the centre. Nic’s bouncing curls are hard to miss, and I watch as she and Mel disappear through the sliding doors.
Hey, Nic.
I know better than to expect a wave.
Finally, the aqua aerobics class finishes up, and I’m soon in the water, where life melts away. I forget to look out for Nic. I think of Aimee and our Slurpees. And of Dad showing me the birds. I relax and wallow with Clare, until Wendy starts booming out that our lesson has ended.
Already? My shoulders tense and my fingers tingle.
Clap, clasp, squish.
Now comes the worse part. To avoid another disaster, Wendy’s organised for Clare to dress me in a smaller change room attached to the gym. There’s a disabled cubicle with a grab rail and a non-slip mat and, I’m guessing, no ladies clutching babies. They probably cleared the place as soon as they saw me come in.
I shiver and wobble as Clare helps me to the change room, telling me everything’s going to be alright. But my chest is tight and my hands twist in her grip.
Don’t scream, don’t scream, don’t scream.
Wendy said that if I have one more outburst, I’ll have to stay behind and take religious education with another class. ‘No swimming for troublemakers,’ she said.
Clare has me half-dressed in the disabled cubicle, and I’m doing my best to be extra quiet, when the change-room door opens. There’s a gap below the cubicle door, and I see two pairs of black school shoes walk to the sinks. Someone obviously didn’t get the memo about keeping out of here.
‘Can I borrow your lip gloss?’ says a voice.
Mel?
‘Aren’t we practisi
ng resuscitation next?’ says the other. ‘You know, mouth-to-mouth, CPR?’
I smile.
Nic!
‘I guess. Still, gotta look good while you save a life.’
‘Totally.’
Clare raises her eyebrows but keeps dressing me.
‘Leg up, Ava,’ she whispers, as if we’re stowaways. I lift my leg carefully, holding the grab rail to steady myself.
‘How’s your dad?’ Mel asks. ‘Is he home yet?’
‘Nope.’
‘Oh?’
‘Yeah, well, it’s complicated.’
I hear a rustle and a cough, and then, ‘Oh, babe, are you okay?’ There’s more rustling and the two pairs of shoes move close.
‘It’s fine; it’s nothing. I’m okay.’
‘Is it your sister? Has she been screaming?’
There’s a sniff. My fingers curl and twist.
Don’t scream, don’t scream, don’t scream.
I shove a fist in my mouth.
There’s another rustle while Nic blows her nose. ‘No, it’s not her,’ she murmurs.
‘Here, have another tissue.’
‘Thanks. Sorry. It’s just … I don’t have anyone else to talk to.’
You could talk to me, Nic.
‘I miss him, you know, and, like, Mum’s so wrapped up in everything, she doesn’t …’ There’s a teary laugh. ‘It’s like I’m not important. Like maybe I don’t exist.’
The change-room door opens, and another person enters. The snuffling stops, and Nic and Mel’s black shoes head towards the door.
I grip onto Clare. She sits me on the bench to put on my shoes and socks, and I try not to cry.
You do exist, Nic. You are important – to me.
Wendy’s waving her cards at us the following day, but all I can think about is Nic. I wish there was a way I could help her.
‘What’s everyone doing this weekend?’ Wendy’s asking. ‘Bowling? Movies? Anyone staying up late?’ Freya’s asleep in her chair; Derek’s saying, ‘Yes, please’; and Brandon’s wearing his headphones and flapping his hands.
The mention of bowling reminds me of Aimee. I wish I could see her again. Aimee has two sisters – I bet she’d know what to do.
My teeth clench. My arms stiffen. Wendy’s still waving cards. I don’t care about staying up late. I don’t care about the movies.
I want to talk to my sister.
I bite my hands and my fingers.
Don’t scream, don’t scream, don’t scream.
But I can’t keep it in.
I scream and scream and scream.
All day.
I scream at Wendy’s stupid cards. I scream at the other kids at lunchtime. I scream at Dan in art. I don’t want pink and purple. I want black. Lots of black. I want to paint sharp edges and harsh lines, not wafty clouds and butterflies. Dan told us that a painting says a thousand words, but I can’t even utter one.
I scream because I want my dad back and my mum not to have to care for us all.
I scream because I wish I were a better sister.
I would talk to you, Nic.
There’s only one place for non-stop screamers. ‘I don’t have time for this,’ says Wendy, closing the door behind me. ‘You stay in here and we’ll get you out when you’ve calmed down.’
The time-out room has no windows, no furniture and no soothing pictures to distract me. I scream until my throat feels like sandpaper and my ribs ache. So is this what life has come to? Sitting in my wheelchair, alone, in a room no bigger than a disabled toilet. A room that smells like a disabled toilet. My head throbs. My armpits sting with sweat.
Mum and Dad would be better off without me.
Nic would have a better life.
‘Not a good day?’ asks Sam when he picks me up from school.
My head flops so that my chin is almost down to my chest. I don’t feel like smiling. Or moving. Or anything.
Not a good day at all.
Monday’s no better.
‘So, Ava, what did you get up to this weekend?’ asks Wendy. ‘Visit your dad? Go for a drive with your mum?’ She’s holding a card with a picture of a man on it and she’s shoving it near my hand. ‘Visit Dad?’ She moves the card closer to my clenched hands.
I wouldn’t be able to take the card even if I wanted to.
‘Ava! Look at the cards. Show me what you did this weekend.’ Wendy raises her voice and waves three more cards in front of my face. ‘Did you eat a burger? Watch a movie? Go for a drive?’
I want to slap the cards right out of her hand. I want to say bad words like I’ve heard Nic say (but never in front of Mum). Instead, I slump in my chair and wish Wendy would leave me alone. But we have a uni student on teaching prac at the back of our class today, and Wendy’s pretending to be teacher of the year. She pulls another card from the box.
‘Now, Ava, I know you like The Fairies. See here? Did you watch The Fairies on TV?’
No! I like The Next Step and Backstage now. Do you have a picture of Backstage? No, Wendy, you don’t.
I turn my face, pretending to look out the window. Wendy moves her face close to mine. I wait. Her breath smells of stale coffee, as usual, but I wait till she’s closer. Really close.
Then I spit the most enormous spit ball ever. Saliva flies over Wendy’s face. Globules of foam land in her eye. Little black specs of toast from my breakfast splatter her cheeks.
The prac student covers her mouth. I’m not sure if she’s laughing, or if she’s staring in shock.
Either way, Wendy excuses herself from the room, and Brandon starts pacing and flapping.
‘Yes, please!’ shouts Derek, waking Freya with a jolt. She looks around, like she’s forgotten where she is, then starts banging her palm against her temple.
Tell me about it, Freya. Being at school is the worst.
The prac student is watching us like we’re in a snake enclosure at the zoo. I want to tell her we won’t eat her. We might dribble and pace and spit, but we have feelings and thoughts and we have things we want to say.
You just have to learn how to listen.
That afternoon, Wendy sends an urgent message, via my communication book, to Mum: ‘I’m concerned about Ava. Is everything alright at home?’
On Wednesday, I bite one of the aides so hard she has to take the rest of the week off. Wendy rings our house. A meeting is scheduled before school on Friday.
On Friday morning, Mum cancels Sam’s taxi and drives me to school herself. Wendy meets us at the gate and leads us down to our empty classroom.
‘It’s just, as you know, we already have behavioural challenges in our class,’ she explains. ‘But with all Ava’s screaming? Well, everything’s become quite disrupted.’
Disrupted is one tenth of the truth. Our class has become a war zone. My screaming is loud enough to shatter glass and starts the second Wendy pulls out her first stupid ‘hello’ card. Mum and Wendy murmur about stress and coping and how special-needs kids don’t like change.
My face hardens. This isn’t about change.
But no-one asks me for my opinion.
‘I’ve rung Disability Services and explained how challenging Ava’s condition is,’ says Mum, ‘and how Ross needs me too, but it’s not so easy to get help.’
‘You could try medication,’ Wendy suggests. ‘A lot of the kids use meds. It can really help settle them.’
Mum shakes her head. ‘But they cause drowsiness, and with Ava’s muscles, I didn’t think …’
Maybe that’s why Freya keeps falling asleep. She’s probably on a double dose of calming meds. Poor Freya. How will she ever learn anything if she’s always asleep?
Squish, clench, clap.
I glare at Wendy. I’m sure she’d be delighted if I took the same tablets as Freya and snored
all the way through school.
But then my hands loosen up. Mum’s saying no to medication and taking a phone number for a behaviour clinic instead.
‘They’ll help you get to the bottom of this,’ Wendy says. ‘They have quite a good reputation for settling difficult behaviour.’
But I don’t need settling. I just need the right words to say.
‘But why do I have to come?’
‘The behaviour therapist wants to meet us all,’ Mum explains to Nic, ‘to help understand what’s upsetting Ava. Besides it’ll be good for all of us to have someone to talk to.’
‘Why would we talk to some random therapist? They literally won’t even know us.’
But Mum insists, and on the day of our appointment Nic spends an hour getting ready. Funny, because when she eventually emerges, she’s wearing a crumpled t-shirt and her favourite ripped jeans. That took an hour?
But Mum doesn’t say anything and doesn’t complain when Nic plays Candy Crush the entire drive there.
‘How about we leave phones in the car?’ suggests Mum.
‘You want me to come in or what?’ says Nic.
Mum sighs and then glances in the rear-vision mirror. ‘Ava, honey, no biting, okay? The lady we’re seeing is only trying to help. Let’s make sure we are on our best behaviour today.’
The hairs on my arms stand up. I hate it when she says ‘we’ like that. We all know she’s talking about me.
We’re the only patients in the behaviour clinic’s reception and our specialist greets us at the door. She has smiley brown eyes and is wearing a smart navy skirt-suit.
‘Hi, I’m Jin-Soo,’ she says. ‘I’ve booked us into the big meeting room. Follow me.’ Some of the other staff look up and smile as we pass. So far, so good. No staring. ‘Then we can spread out and get comfy.’ She swings open a door to reveal a large white desk and trendy-looking swivel chairs.
I glance at Nic. Swivel chairs. Awesome.
‘Can I get anyone a drink before we start? Tea, coffee, hot chocolate?’
Everything I've Never Said Page 7
