Raising four lively children is an adventure for any family, and Team Shepler is no exception. Their hectic routine of swim practices, homework squabbles, music lessons, and endless laundry may seem ordinary at first, but appearances can be deceiving. And magic can be found in the extraordinary.
Sebastian, the youngest, made Team Shepler complete. But his diagnosis of the rare AUTS2 Syndrome was their admission pass into a secret world—a clandestine reality where monsters stalk, joy must be embraced in the immediate present, and the smallest of triumphs are zealously celebrated.
Although families with special needs all face similar challenges, membership within their exclusive population often leads to an overwhelming sense of isolation. Exacerbating this difficult reality, well-intentioned efforts to “blend in” often mute opportunities for the outside community to consider our secret world. Empathy requires understanding. Kindness demands awareness. And neither are feasible without knowledge.
So please accept Team Shepler’s invitation to spend three remarkable unremarkable days glimpsing behind the curtain that families on special needs journeys often feel required to draw.
Our youngest son Sebastian is one of less than 150 people in the world with the diagnosis of a genetic change called AUTS2 Syndrome. I find myself slanting our reality and hiding our challenges so that we appear "normal". Then I feel sad and angry when people don't understand what our life is actually like. That's me, creating my own problem. So I wrote a book. An honest book that describes just three regular days of life with a child who has a disability. It's triumphant and sometimes funny, but it's also sad - because the challenges are genuine. I hope if you read it because a disability has touched your life, you feel connected and encouraged. I hope if you read it to experience the world through a different lens, it helps build awareness that leads to a stronger safety net for our precious kiddos.
In second grade, Amanda Shepler declared her intention to make a career as a writer. When she grew up, she did just that.
Now one of the nation’s top-ranking grant writers, her words have secured tens of millions of dollars to support high-impact programming for schools, tribes, hospitals, colleges, and nonprofit agencies across America.
Amanda lives in Western New York with her family and is honored to be able to share their story.
Behind The Curtain
By
Amanda Shepler
Review by
Heidi Lynn’s Book Reviews
First, I want to thank Amanda Shepler and The Nonfiction Author Association for providing me with this book so I may bring you this review.
Amanda Shepler opened up her heart and shared with the world how amazing her son Sebastian is in Behind The Curtain Three Days in the Hidden Life of a Special Needs Family. Sebastian is the sweetest, smartest, cutest little boy ever with a heart of gold who was born with a very rare form of AUTS2.
I absolutely loved the cover showing all of Amanda’s kids. It was the perfect cover for this book.
This book was written over eighty days and is dedicated to her amazing children whom she loves with all of her heart.
Amanda also dedicates this book to her AUTS2 family that are separated by distance so that our remarkable children are able to shine all over the world.
It is a small world but in reading this book I learned that both the author and myself we both reside in WNY.
Behind The Curtain is very informative as Amanda educates you on AUTS2 the disorder that her youngest son Sebastian was diagnosed with. This book shows you the good and the not so good moments that they have with Sebastian.
I absolutely love how supportive everyone in this family they are of him. It melted my heart how they would play games to help him eat more or not be afraid of the dark. I loved the pet names they had for eachother, etc. It is clear to see that this is such a very loving family.
Not only is Sebastian a very sweet and adorable little boy but he is so smart too! He knows so much about Manatee’s and other animals.
I hope this book can shine a light on this disorder and bring awareness to it. Maybe help someone that maybe going through this or know someone going through this.
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