A New Way to Teach Children About Disabilities - through Josie's Joy

Introducing Joyfully Josie!

I have some pretty big news. I can add 'children's book writer' to my LinkedIn profile.

Yup, I wrote a children’s book. I plan for it to be a series. And it’s a digital platform as well!

Allow me to introduce…. drumroll please…. Joyfully Josie!

Why did I write a children’s book? It’s twofold.

First, I thought I could give parents a tool to help them introduce disabilities, medical complexities, and inclusion to their children at a young age.

The truth is, young kids are usually afraid when they meet Josie.

I don’t think it’s necessarily Josie they are afraid of, but when they see her, they’re confused and well, a bit scared.

I notice the exact same face they all make. It says “why is this girl, who looks to be my size, or even bigger than me, not able to talk or walk? What is going on here?”

They look at me with deer-in-headlight wide eyes, usually with their hand near their mouth, they take a few steps back, and then they hide behind their parents. I don’t blame them. This is new to them. It’s unusual and it’s intimidating.

I don't blame them. Most young children just don’t understand disabilities. This is new to them. I hope for Joyfully Josie to help turn this fear into excitement.

I once read that a great screenplay can change perceptions in our culture. I hope to create a new perception for young children, so that when they see a child in a wheelchair, instead of being scared, they're excited because they remember what Joyfully Josie taught them.

The second reason I wrote this book is to share a poignant message that I am lucky to receive every day:

Despite Josie’s many challenges, she finds and spreads so much joy.

The tagline of this series is... drumroll please... Live Joyfully.

It’s a mantra, perhaps a movement! I hope for Joyfully Josie to remind us all, children and adults alike, to live joyfully no matter what hurdles and setbacks we face in life. We all face them. When they happen - no matter how large or small, we can take a moment to think of Josie’s laughter and we can just remember those two words - live joyfully.

Speaking of Josie’s laughter, you can hear it anytime on the website!

I wrote this book in the middle of the night. The idea came to me around two a.m. and since many ideas have come and gone, I knew I had to get out of bed and type it before I forgot. I had my first draft before 4 a.m. The final draft is quite different, and well, isn't that what being an author is all about?

I found the perfect illustrator. I love David Concepcion's style. There's something retro to it, yet fresh and new. David has become a friend that I share the experience of being a caretaker for a loved one with. His wife also has disabilities and he is her caretaker. We can talk wheelchairs and doctors appointments ‘til the day is long.

David has quite the resume! The Jetsons Movie! Dora the Explorer! I found it amazing how easily he took my words and created the vibrant images and scenes to tell the story. I’m excited to work on the next and the next together.

The accompanying digital platform www.joyfullyjosie.love has layers of interactivity. There’s Josie’s Arcade where kids can play Josie’s favorite games. We’re launching with ‘Name That Animal Sound.’

Get this - children can become a character in Josie’s Playground and help along the mission to find a cure for FOXG1 syndrome and more childhood neurological diseases! When children start their own Live Joyfully fundraising team, we will create their own illustrated character in Josie’s playground! They become a part of the world and they can even purchase merch with their own character on it. My hope is to make JoyfullyJosie.love a place children love to visit. It will help continue the conversation around disabilities and perhaps, make disabilities a lot less scary.

Did I say twofold?

Well, there's a third reason I wrote the book: inclusion.

How can children know how to include Josie if they don't know how to approach her? How can they possibly know that, even though she can't talk, there are ways to communicate with her? Even though she can't run and play, there are other ways to engage with her? Without asking questions, they won't know how to include her.

Through Joyfully Josie, I hope to empower children to feel comfortable asking the questions that will enable them to include children with disabilities in their activities. While they may not be able to participate in the same games as other kids, they can still find ways to enjoy meaningful moments together.

So, as I continue to work tirelessly with my amazing dedicated team of FOXG1 parents on the path to finding a cure for FOXG1 syndrome, I also hope to share Joyfully Josie with as many children as possible.

My aim is to spread the mantra to Live Joyfully far and wide.

Books are available on www.joyfullyjosie.com and on good 'ol Amazon!

I can’t wait to hear your thoughts! Drop me a line at [email protected]

- Read the press release HERE -