Thanks for joining us again to talk about Everything I’ve Never Said, an original, affecting and unforgettable work.
Thank you, and my pleasure.
There’s deservedly a big buzz about this novel. It’s for middle readers – what age group is that?
We’re finding the novel appeals to anyone from 9 to 109! It’s found in book stores and libraries on the ’middle reader’ shelves as it is published for that age, but it is suitable for anyone in upper primary to tweens, young adults and adults alike.
How is this book different from your other works?
My other stories each features a species of vulnerable Australian wildlife, and a young person trying to save them. Written for 7-10 year olds, they’re completely fictional adventure stories, (although based on real animal issues), plot driven and very animal focussed. My new story is based very much on my own family’s experience of living with a young person with a disability and the story is more character focussed. The plot allows a unique insight into a moment in time in a family’s life, and as such, probably appeals to a wider reading age and is a more emotional, heartfelt story.
Could you tell us about the major characters in Everything I’ve Never Said?
Everything I’ve Never Said is about a fictional character, Ava, an eleven year old with Rett syndrome who can’t talk or use her hands to communicate. Based on my own daughter, Charlotte, who suffers with Rett, the fictional Ava lives with her nearly fourteen year old sister, Nic, and her mum and dad, but struggles to tell them what she wants and how she’s feeling. Through Ava’s inner voice, the reader hears what she wants to say, even when her parents and sister don’t understand her. It takes the arrival of her new carer, Kieran for the family to work out a way to help her.
How do you show the authentic relationship between protagonist Ava and her older sister Nic?
My eldest daughter, Beth, helped me a lot with the relationship between the two girls. Despite having raised my daughters, and watching them grow up together, I found it hard capture their relationship on paper. Like many siblings, it’s not all hugs and love – there’s rivalry and jealousy, but when the chips are down, true love is exposed. It was important to me to accurately show how Nic would respond to her sister in various situations. I didn’t want to show the typical eye rolling teenager. For example, when I asked Beth what Nic would say when Mum wanted to put Ava in respite, she very quickly replied, ‘She’d say no, Ava would hate that!’ This wasn’t the reaction I expected. I thought Beth would think Nic would love time without her annoying sibling, rather than consider her sister’s feelings.
Why did you write the book as fiction rather than non-fiction?
Ava’s voice was very powerful when I began writing, but having never heard my own daughter speak, I could only imagine what was going on inside her head. Right from the start, I had to use poetic licence to interpret what was happening for Ava, which meant the book naturally became a work of fiction. Many of the raw, difficult experiences in the book are based on true events, for example, being placed on hold for hours with Centrelink, Ava having a melt down in the hospital, the embarrassment of Nic and the exhaustion of Mum, but there were some things about our life I wasn’t ready to share.
Ava starts at Rosie’s Cottage, a respite home. In your experience, how accessible and worthwhile is respite care for those with a disability?
We’ve always struggled with respite. Having a non-verbal child means they can’t tell you if everything is as it should be when they stay somewhere else overnight. Also, because our daughter is so physically fragile, the other clients were often not a good match. She’d be knocked over, or just left sitting on a couch all weekend. If it is a good service, respite can be very worthwhile as it gives the person a chance to make their own friends and have experiences they would never have with their own family. For example, we’ve never taken Charlotte to Dreamworld, but she’s been with respite. We currently don’t have a safe, enjoyable overnight respite place for our daughter, so we pay carers to care for her one-on-one in our home, so she feels safe and protected when we’re not there.
How helpful is art for young people like Ava?
Art can be incredibly soothing. In the story, Ava’s colours in her paintings to reflect her mood, and I think my own daughter would do the same. But more than that, the art teachers and music teachers we’ve encountered with Charlotte seem to have a way of bringing out the best in their students. Perhaps it’s accessing that other side of the brain? I’ve got a feeling that would be the same for people with or without disabilities. Art and music are very therapeutic.
Many people don’t treat those with a disability well, e.g. substitute teacher Wendy. What is something you would like people to know about how to treat someone with Rett syndrome?
I often ask people to consider Stephen Hawkins. Bent and twisted in his wheelchair, how would we ever know what he had to say if he couldn’t use a speech device? So, I try and tell people not to judge a book by its cover. People with Rett syndrome and any disability are just like us. They may not be able to communicate, they may look a bit different, but talking to them like any other person, smiling, and asking how their day is going, will make them feel less isolated and more included as part of the community. Empathy is so important.
What parallel have you created between Ava’s life and what happens to her father?
In the story, Ava’s dad falls unexpectedly ill in Ava’s presence. This creates a situation where Ava feels her lack of communication more keenly than ever. She can’t help him, or even call for help. I see this in my own daughter when she tries so hard to say something; her eyes shine and her lips make the shape of a word, but no words comes out. It’s incredibly hard. Creating a situation where Dad can’t communicate for a while gives him a true understanding of what it’s like for Ava, and helps the family advocate more strongly to find a way to help her.
How has your family reacted to the story?
My husband was surprised at first, saying, ‘Is that what you really think is going on inside Charlotte’s head?’ He said the book has helped him understand her more and make more of an effort to try and understand her subtle ways of communicating. Both daughters, Charlotte and Beth, are very proud of the book, with Charlotte grinning all through the recent book launch, and any time I talk about it.
Your books have received recognition in many awards. Which has meant the most to you and why?
Recognition from your peers is so important. I’m incredibly proud and grateful for any award nomination as we have so many talented authors in Australia. I think, in particular, when my first book, Smooch & Rose was voted in the Readings Top 5, and shortlisted for the Qld Literary Awards, it really help me believe I should keep writing. More recently, winning the Environmental Award for Wombat Warriors was pretty fantastic!
What do you hope for Everything I’ve Never Said?
I hope my story will shed some light on people living without a voice. People who can’t speak up, whether they have a disability, or are shy or too scared to say what they think, need to know we do care about what they have to say. I also hoped people with Rett or other disabilities, families, siblings, carers, friends would feel less alone. We’re in this together, and while it might not be ‘Italy’, it’s a very special type of ‘Holland’ where, even with its ups and downs, we live lives full of unexpected treasures.
Thank you so much for giving us even more insight into Rett syndrome and living with disability, Samantha. It has been a privilege.
Thank you, thanks for the opportunity!
(Everything I’ve Never Said is published by University of Qld Press)