We’re at the far end of the pool, for the third time, and Kieran is slowing down so he can swing me around and take me back. Each time, he makes sure my legs don’t bump the edge.
‘Oh, sorry, excuse us,’ he says. Two girls in Nic’s class have taken off their shoes and are sitting on the edge, dangling their feet in the water. They’re both chewing gum, and their long hair is dead straight, like uncooked spaghetti.
‘You’re good at that,’ says one. ‘Want to give me a turn?’
Kieran’s face turns red. Without answering, he zooms me back to the shallow end, where we stay with the rest of my class. I wish he would pull me along again, but the girls are still at the far end of the pool, dangling their feet and flicking their spaghetti hair.
Nic has her hands firmly braced against a dummy’s chest. If you didn’t know her better, you’d think she was concentrating on saving the rubber man from dying; but the truth is, she’s watching me and Kieran like a beady magpie.
It’s okay, Nic. Kieran’s got me! I’m having a really good time.
My cheeks are sore from smiling when Wendy tells us it’s time to get out of the water. I’m still smiling as Kieran helps me up the ramp and, after wrapping me in my towel, sits me in my chair. And then, even though I’m shivering and my fingernails are blue, I don’t make a peep while Wendy takes me to the change room and dresses me.
I take a deep breath. I’ve actually done it. I haven’t screamed once or even thought about pinching.
I’ve had the most amazing time.
I’m in my wheelchair, loaded on the bus, when Kieran sidles up to Wendy. ‘I was wondering,’ he says, ‘at school, what communication system does Ava use?’
Wendy hesitates. She’s standing at the sliding door, her hand resting on the handle as she waits for Freya to get settled in her seat. ‘Ava? We’ve been training her with PECS,’ she says. ‘The Picture Exchange System? We offer the students a series of cards with choices and they pick out which one they want.’
Kieran nods. ‘Yeah, I know PECS. But since Ava can’t really use her hands, how do you, you know, get her to show you which picture she’s chosen?’
Wendy snorts. ‘Look, I don’t want to burst your bubble, but not everyone has the capacity to communicate. Let’s just say we do our best, but sometimes, well … Now, if you’ll excuse me, I think everyone’s good to go.’
She nods for Kieran to climb in before pulling the door shut with a little more force than necessary. A scream pushes hard against my chest. My water-wrinkled hands clasp and squish as I try to hold it together. Luckily Kieran sees and gives me a wink. ‘Don’t believe a word of it,’ he whispers. ‘We’ll get you talking. You’ll see.’
The next time Mum takes Nic to her maths tute, they encourage Dad to come for the drive. Kieran stays home with me while I have my morning tea, his iPad on the table while I eat. The ‘yes’ and ‘no’ squares stare at me from the screen.
They didn’t work last time, remember?
I eat my biscuits while Kieran asks me questions, but my hands won’t press a thing.
‘What’s this?’ asks Nic, when she, Mum and Dad get home.
‘Oh, nothing,’ says Kieran. ‘Just something I’m trying to help Ava talk.’
Nic glances over to where Mum’s supporting Dad as he struggles through the door. ‘What does it do?’ she asks, pressing the iPad screen with her finger so that ‘YES!’ booms out.
She frowns. ‘What, like, Ava’s supposed to press that little button so you’ll know if she means yes or no?’
Kieran shakes his head. ‘Well, theoretically. I ask questions, she answers. Only, it’s not going so well.’
‘Seriously? You know Ava can’t point, right?’
We’ll find a way, Kieran. Don’t worry.
Kieran looks down at his hands. ‘We saw this girl at the disco with a special speech machine,’ he explains. ‘She moved her cheek against a controller, and I’m thinking … I know Ava can’t control her muscles like that, but there has to be a way to help her talk. I just don’t know how.’
‘What if Ava didn’t have to use her hands or her cheek?’ Nic spreads my biscuits out on the table, just out of my reach. Chocolate wafers on the right, vanilla on the left, strawberry in the middle. ‘Hey, Ava, where’s the vanilla?’ she asks.
Clap, squish, clench.
I can’t point to the vanilla, Nic. Don’t make me fail again.
Nic keeps motioning to the wafer biscuits, insisting I make a choice. ‘Come on, Ava. Vanilla? Where’s the vanilla?’
My ears ring. The fridge hums, and my clasping hands ache.
‘Is she okay?’ asks Kieran, spying my screwed-up face.
‘Ava!’ Nic insists. ‘Where’s the vanilla?’
And, despite my wobbly head, I look left.
Kieran’s eyebrows rise.
‘And the strawberry?’
I look to the middle.
Kieran leans forwards, his eyes shining. He’s checking my face to confirm where I’m looking, so I keep my gaze steadily on the strawberry biscuit.
‘That’s awesome!’ he marvels, leaning back again and slapping his hands excitedly against his thighs. ‘So, she’s using her eyes to make choices?’
Nic shrugs. ‘Yeah. She does it all the time. But if you don’t look carefully, you don’t see it. Right, Ava? She moves her eyes pretty quick.’
‘What’s this?’ asks Mum. She and Dad have finally joined us in the kitchen.
‘Ava. Using her eyes to say yes or no,’ explains Kieran.
Mum glances doubtfully at Nic. After the Dynavox didn’t work, one of my therapists made up pictures on a board, but no-one could tell where I was looking.
‘But technology is better now,’ Kieran claims after Mum explains this. ‘Take Ava’s friend Aimee. She works her device with her cheek. There must be something for people’s eyes?’
My heart skips. Pointing fingers? Shifting cheeks? He’s right. There has to be something for moving eyes. There must be something.
Mustn’t there?
Kieran mentions a Disability Expo he’s seen advertised at the hospital. ‘You guys should check it out.’
Nic bounces around excitedly. ‘Yeah, Mum. We have to go.’
Mum’s murmuring something about it not being a good time, when Dad slowly lifts his arm. It’s the first time Dad’s moved his right hand since his stroke, and we stare, holding our breaths, as he places it over Mum’s. ‘Ava,’ he drawls, nodding towards me. ‘Talk.’
My heart swells.
Dad knows how it is to be me. To be locked in.
Dad understands.
Mum, Nic, Kieran and I watch as Dad’s mouth twists into a smile. His whole face beams as he strings the words together. ‘Ava talk.’
The following weekend, Mum, Nic and I are ready to tackle the Disability Expo. Dad’s too tired to face the crowds, so he sits with Kieran while the three of us drive to the showgrounds – the same place they parade fat beef cattle once a year.
There are no Hereford or Murray Grey cows in sight now, though. Today the showgrounds are set up with tents and stalls advertising resources for people with a disability. But when Mum winds down her window, the smell of cow poo is still there.
‘Here for the expo?’ asks the parking attendant. When Mum says yes, he waves us through to disabled parking. Once I’m in my chair and we’ve found our way to the exhibition hall, the questions begin.
‘Does your daughter like cooking?’ asks a lady, giving out little heart-shaped chocolates. ‘We run cooking programs for people with …’
Mum shakes her head. I’ve helped Dad make biscuits before, but I can’t really hold the utensils.
The next stallholder is kitted out in a sparkling glitter jacket. ‘Are you a singer? We offer karaoke twice a week and …’
‘Looking for
work placement?’ asks a man in a suit. ‘We have full-time, part-time …’
We move on. I’m still at school. And anyway, what could I do at work?
‘Forty-seven dollars an hour?’ Nic repeats after a quote for arts and crafts lessons. ‘We could, like, literally buy up a whole aisle at Spotlight for that.’
But it turns out that forty-seven dollars an hour is the going rate. Mum soon stops taking brochures and finds a quiet spot to sit while we have a drink and share some sliced apple. ‘Sorry, Ava,’ she says. ‘I’d have to sell a kidney for you to do any of these activities. Perhaps we should just skip the rest? What do you think, Nic? I haven’t seen anything to help Ava talk. Should we go home?’
Nic flicks anxiously through the stall guide. ‘Maybe.’
I look desperately around the room. We’ve only seen half the stalls. I was hoping there’d be something …
‘Hi, guys. What’s happening?’
Aimee!
‘She’s pretty,’ Aimee says, turning her chair towards Nic. ‘Is she your sister?’
Nic stares at Aimee. Aimee takes that for a yes. ‘Hi, Ava’s sister. Hi, Ava’s mum,’ she says. ‘We met before. Hey, Ava, come check out stall 37. It’ll totally blow your mind!’
Mum quickly screws the lid back on her drink bottle. ‘Thanks, Aimee. But we’re just about to go.’ She puts the drink bottle away and reaches for the handles of my wheelchair. My hands start squishing.
What’s at stall 37?
‘Wouldn’t hurt to have a look,’ says Nic.
Mum glances down the aisle and then back at Aimee.
Please, Mum?
‘Okay,’ she says. ‘But just a quick one.’
We follow Aimee’s wheelchair past a group of stands set up along the back. We pass numbers 32, 33 and 34. These other stalls all look pretty boring. What could number 37 possibly have for me?
Aimee finally stops. She’s in front of a stall with a blue banner that reads ‘Lifetech’ in large white letters, and a whole heap of computers and technical-looking devices set up on a desk.
What’s this?
Mum stands beside me, staring blankly at the stall. ‘Are you sure this is it?’ she asks, her voice tense. ‘Not 38?’ Across on 38 is a display for ‘Riding for the Disabled’. That would be okay, I guess.
‘Is there anything I can help you with?’ The man at stall 37 is wearing a blue shirt with the Lifetech logo. ‘Want a demonstration?’
Mum starts to shake her head, but Aimee wheels closer and Nic steps in to grab a brochure.
‘Yes,’ Aimee says. ‘Could you please show them what you showed me.’
‘Sure. No worries,’ says the man. He signals us to the left of the desk where there’s a big computer screen set up on a mount. He motions to Nic to sit in the chair in front of the screen and, although she hesitates, I can tell she’s interested to see what the computer will do. She sits down and Mum pulls my chair in beside her so I can see too. The man adjusts the mount so the screen is level with Nic’s head. ‘Now, sit up tall and look straight,’ he says. ‘Use your eyes to follow the bubbles as they appear. If you want to pop one, just let your eyes linger on that bubble for a second. Okay?’
Bright pink and blue and orange and yellow bubbles drift across the dark blue screen. Whenever Nic’s gaze moves, a red dot on the screen moves too. When Nic rests her gaze, the red dot settles and pops the bubble. Pink first, then the blue. The red dot is like a dart coming straight from Nic’s eyes.
My hands squeeze together. This is it! This is my way to speak!
‘The laser picks up where your eyes are looking and tells the computer,’ explains the man. ‘That’s how you pop the bubbles. Here, let me show you something else.’
The man flicks a switch and up comes a farmyard scene with different animals. ‘Say, for example, I wanted you to find the cow,’ he says. ‘Go on – show me the cow.’
Nic’s eyes move. The red dot appears on the cow. ‘Moooo!’ says the cow.
Mum laughs.
I sit forwards in my seat. Give me a go. Give me a go!
‘Good, hey?’ says Aimee.
Good? Good doesn’t even begin to describe it. It’s brilliant. Better than brilliant! Amazing, sensational, outstanding!
‘Now the pig.’
The dot moves from the cow to the pig. ‘Oink!’ says the pig. Now it’s my turn to laugh.
‘And the duck?’
Nic can’t find the duck, but I see it sitting on the barn door. My eyes sting I’m staring so hard. But my eyes don’t count. It’s Nic’s the computer is looking for.
Finally she finds the duck. ‘Quack!’
‘You can use any number of programs with this device. It’s designed to help people who can’t use their hands to communicate,’ says the man, looking at mine. ‘Imagine if you could use your eyes to guide the red dot to say, “I need a drink” or “I’m hungry”?’
Or to say, ‘I love you, Mum’?
‘So, how much is it?’ Mum asks.
The man gives an embarrassed chuckle. ‘Well, you see, this technology is still very new, and since it’s imported from—’
‘So, pretty expensive, then?’
‘For the basic model, with no case and no programs? Twenty-two thousand dollars.’
‘Twenty-two …?’ Mum grabs the handles of my chair. ‘Well, thanks for the demo,’ she says, shoving the brochure deep into her bag. ‘Maybe some other time.’
‘Some other lifetime,’ she mutters as we move away.
‘You can apply for funding with a referral from your speech therapist,’ the man calls out, ‘to help subsidise the cost.’
But it’s too late. Mum’s marching us down the aisle towards the exit.
My whole body sinks. The device was perfect. I could definitely use it to speak.
‘Told you it was good,’ says Aimee, oblivious to Mum’s chook-bum face. ‘I mean, not for me, but for Ava, don’t you think?’
Mum smiles patiently. ‘Maybe. I’m not sure …’
‘But would you get her one?’
‘Possibly, Aimee. As soon as I sell some organs.’
‘Can’t we raise the money somehow?’ asks Nic on the way home. ‘We could fix up Dad’s veggie patch and sell organic veggies at the market. Maybe I could play drums at the rec centre … or … Okay, so couldn’t we just ask the bank for a loan?’
Mum’s driving and doesn’t answer.
‘Maybe there are other models? Cheaper ones?’ Nic digs in Mum’s bag and takes out the Lifetech brochure. ‘New laser-sensitive speech device. Ideal communication tool for patients with little or no hand movement. Calibrated to individual needs. Eye movement to speech output.’ She turns the brochure over. ‘Jeez! It says it here too. Twenty-two thousand dollars.’
I’ll never learn to talk.
But then Nic looks up, a hopeful gleam in her eyes. ‘What about that funding? The man said if Ava gets a referral, then we could get the government to help pay for the device.’
Mum groans. ‘We’ve seen so many therapists, Nic. Wouldn’t one of them have mentioned this by now?’ She glances at me in the rear-vision mirror. ‘Obviously they mustn’t think Ava could use it.’
But Nic doesn’t agree and reminds Mum how hard it is to pick up on me choosing things with my eyes. ‘She’s too quick,’ she says. ‘That’s why we need the device. So it can do the work. I bet you once they see Ava using it, they’ll definitely give us the money.’
We drive for a while before Nic adds, ‘So, if Ava gets this speech machine, can I get a new laptop?’ Nic’s got Mum’s old one, and the D key keeps falling off.
Mum shakes her head. ‘Honey. Let’s just see. What if the therapist doesn’t think Ava can use it?’
But I will be able to use it!
‘Okay, but if she does, then can I get a la
ptop?’
‘Don’t forget – tell them about her eyes,’ Nic calls as Mum loads me into the car.
We’re on our way to my speech therapy appointment. Mum’s already clenching her jaw. Her back and shoulders are rod tight. She knows about me and therapists. We don’t always get along.
‘Ava Mills. To see the speech therapist,’ she says at the reception.
Balls and hoops tower against the far wall, just like at our school gym, and a mini trampoline lurks in the corner. I swear I’ll scream the building down if anyone makes me go on that. Dad used to hold my hands and bounce me on one of those before they knew I had Rett. The up-and-down always made me puke.
‘Good. Thanks,’ barks the receptionist, checking my name off on the computer. ‘Your therapist’s running late – I’m sorry – so if you could just take a seat?’ She doesn’t look sorry. She’s filing her nails while humming along to a song playing through her earbuds.
I tense. The therapist will be nice, won’t she?
The lino tiles swirl beneath my feet. The lights glare. The automatic doors swish.
Mum bites her lip. ‘So, about how long do you think?’ she says, trying to sound casual. But her voice is high-pitched, and the way she’s gripping my arm, I’m guessing she’s feeling far from casual.
‘Twenty minutes,’ says the receptionist, not looking up. ‘Maybe twenty-five.’
Mum’s shoulders drop.
The photocopier whirrs. A microwave pings. The smell of reheated spag bol wafts in from the kitchenette.
I only have a slim chance of lasting twenty minutes, but Mum’s promised we’ll investigate the speech device, so she puts away her keys and moves me towards a seat in the empty waiting room. Luckily she’s remembered to bring some books, and she picks The Very Itchy Bear to read.
Like Little Ginger, I enjoy reading along in my mind and find the pictures soothing. It might be a book for babies, but it’s better than nothing. And besides, I’ll be talking soon. I’ll ask Mum to take me to the library, where we’ll start at A in Junior Fiction and work our way though every book.
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