Tag Archives: storytelling

Through The Eyes of Me – Writing a book for my autistic daughter

Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon’s book has just been published by Graffeg.

Getting a diagnosis

We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.

As Kya’s parents we’re blessed –  she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.

When Kya started mainstream school, the children in her class asked the teacher questions about her, like:

“Why is Kya allowed to run around?”

An illustrated page from Kya's book. The text reads: I am always on the move. I don't care for sitting still. I love running.

Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!

“Why won’t Kya talk?”

She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.

Picturing a book

And illustration of Kya and her Dad swinging her aroundI wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully.  We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!

We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.

Order the paperback and add ‘Scope’ as coupon code to get a 20% discount on the normal price of £6.99.

Check out our Pinterest board of kids books for siblings of disabled children.

For National Storytelling Week – help us champion books that feature disability

Here at Scope, stories are central to everything we do. For National Storytelling Week we’re taking the opportunity to celebrate authentic stories and calling on publishers and authors to improve the representation of disability in literature. Read on to find out about all our activities so far and what we plan to do next.

Why tell stories?

Great stories have the power to connect us, to raise awareness, to make people feel and act. They’re at the heart of everything we do at Scope and they have a huge role to play in achieving social change. Few people are moved by statistics or facts, but when you hear someone’s personal story it can have a powerful impact.

Stories tell us things we didn’t know before; they show us other ways of living, other experiences, other views on the world. They can also make us feel less alone by showing us people like us and stories like ours – happy ending or not.

Telling authentic stories

At Scope, every story is told by the storyteller themselves – we’re just the ‘caretakers’, if you like. Although we interview people about their experiences, the stories we share are always in first person and completely in the storyteller’s own words. And they always have the final say – we never interview and run! We hope this builds trust and shows just how much we value them.

We work with storytellers to share their stories in lots of different ways. This could be anything from a policy report – using real experiences to bring our influencing to life, at events, in fundraising materials, in films and, very often, on Scope’s blog.

We’re really proud of the way we tell stories at Scope. Putting storytellers in charge means we only ever tell authentic stories. We give people a platform to share their diverse experiences and show a more accurate picture of disability. Often, opportunities for people to share their stories are lacking – disability isn’t a huge focus in the media and when it is, it’s often the negative side that you see. We want to make sure that people can tell the story that they want to tell.

Which brings us on to National Storytelling Week.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair
Dan and Emily White – creators of Department of Ability

People want to see better representation of disability in literature

In the stories team we’re privileged to hear about a range of experiences in our day to day work. Unfortunately, for most people, their chance to read stories about disability are limited. If you think back to the books you enjoyed as a child, or even as an adult, you’d be hard pushed to find many featuring a disabled person. As a result, lots of people either don’t know much about disability or they only know the limited (sometimes misleading) view that they’re presented with.

This contributes to poor attitudes and stereotypes which can affect disabled people’s lives in number of ways. Another downside is that disabled people don’t get to read about stories and characters they can relate to.

We ran a Twitter poll which showed that 3 in 4 people want to see more inclusion of disability in literature

So, for National Storytelling Week, we ran lots of activities to campaign for better representation of disability in literature, and celebrated some great work that we want to see more of. 

We ran a comic book workshop with Dan White, creator of Department of Ability. Dan was inspired to create the comic book when his 11-year-old daughter Emily wondered why there were no wheelchair users like her on TV. Dan then set out to create a comic book where Emily would lead a group of superheroes whose impairments, far from holding them back, are actually their superpowers. To watch a film about the comic book workshop, head to our YouTube channel.

Following the workshop, we posted each superhero creation on Facebook and ran  a competition – with the winner getting to see their superhero turned into a guest in the next Department of Ability comic book. Here’s a short film of the winner, Daisy, explaining her superhero design.

We also partnered with the Huffington Post to share a blog each day from different storytellers. Incase you missed some of the content you can catch up here:

“Books Hold A Special Place In My Heart – I Just Wish They’d Have A Place For Me” – Heather’s blog

“The World Needs More Disabled Superheroes” – Dan and Emily’s vlog

“I Don’t Want To Read Books That Treat Disability As A Tragedy” – Anne’s blog

“It’s Immensely Important For Disabled People To See Positive Portrayals Of Themselves In Literature” – Asim’s blog

“Hey JK, Why Wasn’t Harry Potter Disabled?” – Phil’s blog

Following that, we partnered with Books on the Underground to do a ‘book drop’ where we hid 30 copies of Quentin Blake’s ‘The Five of Us’ around accessible tube stations. We had lots of engagement on our social media channels and our campaign was featured on Books on the Underground and on Quentin Blake’s website which was an amazing way to share our message with new audiences.

Our next step is to reach out to publishers and authors to ask them to improve their representation of disability in future books. We will keep you updated once we hear more. – so stay tuned!

To find out more about stories at Scope, head to our Stories Hub and please get involved.

The best toy we ever bought

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

The best toy we ever bought is also the simplest. At first glance you might even struggle to see that it is a toy at all. The toy that has helped my children so much is an unassuming, plain and empty black tray.

The tray itself fits easily on top of my children’s small playroom table and can be easily stored behind a cupboard when not in use. However, this amazing toy has rarely been away in the five years we’ve had it.

Irlen syndrome and specific learning difficulties

Both my children experience symptoms of Irlen syndrome. This is clearest in my seven-year old daughter who experiences discomfort when reading and writing. She is a reluctant writer who will use the minimum of text to finish any task that she cannot avoid by other means.

What this toy has allowed my children to do is to develop their understanding of narrative form throughout their childhoods. This would be good for any child, but for a child with a specific learning difficulty this can be essential.

The empty black tray has been many things over the years; a seascape, a farm, a zoo, a pre-historic scene and even space-world. The tray can be made into anything the children imagine it to be: Sometimes scientific, sometimes fantastic and on occasion downright absurd. Most ‘worlds’ are created out of the children’s existing toys and require no expenditure or trips to the shops.

Creating worlds and storytelling

What the creation of worlds enables children to do is to build up stories using the building blocks of storytelling. First there is a setting (ocean with shells and sand, farm with trees and fields, pre-history with rocks and stones, space represented by shiny aluminium foil). Next the child can add features which denote this setting (boats, barns, fir trees, rocket) and then finally the child can add the ‘subjects’ of their story or inhabitants of their world (pirates or fish, famers and cows, dinosaurs, astronauts or aliens).

By building up this world the child is creating the story of this world and its inhabitants. This is a tangible version of the process children undertake when writing a narrative (‘On a dusty lunar surface a rocket stands surrounded by aliens. An astronaut peers out of the window…).

The child can also create their world starting from the ‘subject’ of their story by then building the environment around their main character (‘The farmer wakes up, walks to his tractor and drives over to milk the cows’).

Once the world is created then the scene is set for the story to develop any way the child’s imagination chooses it to. Moving the characters around to interact with their environment allows a child to build up more sophisticated plot and narrative. Long storylines can be developed which would simply be impossible if the child were reliant on their ability to write.

This can free a child up to experience the joy of storytelling and plot creation. My daughter used to cry if I asked her to write a sentence. She quickly became frustrated and uncomfortable when confronted with a blank page of white paper. This same child could create a world of fairies that would occupy her and her brother for two hours.

Developing narrative skills

What our empty black box has done is to enable both of my children to develop their narrative skills in a fun and meaningful way. Yes, it has taken them both longer to build up the writing skills to do this on paper. Fortunately, their language skills were already developed, simply waiting for their writing ability to catch up. This has prevented them from falling behind too far and has ensured they are growing up with a love of language in all its many and beautiful forms. This allows them to transcend their frustrations and discomfort they associate with pens and paper. It enables them to flourish and evolve into not only confident and happy storytellers but also into the potential natural historians, physicists and anthropologists of the future.

Our square tray measures 60cm x 60cm and it 7 cm deep. We bought ours five years ago from Hope Education.

This comes as a ‘Creation Station’ on sale for £6.59. This can be bought from Hope Education with along with a number of ‘mats’ with the base of different scenes designed on them.

Before we had our wonderful empty box, we cleared a shelf on a secure bookcase. This shelf was at the children’s height and they used to create ‘scenes’ on it.

Regular stars of ‘scenes’ and ‘worlds’ are dinosaurs; farm animals, zoo/safari animals, fairies, dolls house families, ocean animals/fish, aliens, insect and dragons. Props include cars, dolls house furniture, bath toys including boats, rocks, shells, miniature farm buildings, rockets and lunar craft. All of these come from my children’s own toy boxes.