Hello

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My daughter, Hannah, was born with a rare disease called Rett Syndrome. Rett Syndrome is a mutation on a chromosome that affects every aspect of one's life. Hannah is not able to speak by mouth, use her hands, or walk independently. She understands what you are saying and communicates using an eye gaze device.

 

After observing the kids in Hannah's life, I realized how important it was for her to feel included and to tell others Hannah's story - to explain why she uses a wheelchair, why she uses a device to talk, and why she verbalizes a lot of emotion through her eyes and sounds. It is so important to explain to other kids that they have a lot in common with Hannah and some activities may need to be adapted to suit her needs. Children are curious and learn by asking questions. We need to educate them and answer their questions so they will be knowledgeable and comfortable with everyone.

I decided to use my book series -The Adventures of Bug and Boo, as a tool to educate. My newest book, The Adventures of Bug and Boo: Giddy Up to Texas, is about Bug and Boo’s adventure to different parts of the state. Bug has Rett Syndrome and uses a wheelchair to go on adventures. Her wheelchair gives her the freedom to see and do amazing things!

 

The books are fun, creative, and engaging, but your discussion with your students after reading the book will be equally important, if not more important. Often children see a child that does things differently than them and are confused and sometimes afraid. Discussing all kids, all needs, and all hopes and dreams is an important lesson. We can all be a part of making someone's dreams come true, and we need to start this conversation at a young age. Your students are the future and will be the creators, builders, teachers, leaders, legislatures, etc. It's important for them to acknowledge all abilities so that they can create a more inclusive world.