The Children’s Craniofacial Association (CCA) supports the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. These are the books CCA recommends if you are looking to learn more about lived experience with a facial difference.
This list is adapted, with permission, from their resources page on the CCA website.
Click the buttons below to be taken to recommendations for each category.
Children’s Books
Jack’s New Smile : Having a Baby with a Cleft Lip and Palate
About the Book
Written by: Ruth M Trivelpiece MEd, Suzanne N West MSN, Jennifer L Rhodes MD
Illustrated by: Brooke Nunez
Jack’s New Smile was written for brothers and sisters of a new baby with cleft lip/palate. Baby Jack’s experience with cleft lip and palate is recounted through the eyes of his loving older sister. The book is also intended for children born with a cleft to help them learn about themselves. It is meant to provide some answers to questions children may not know how to ask. We hope that by reading this story, your child will know that having a cleft is not scary or bad. The book can also be used as a starting point for a more detailed talk with older children.
Find a copy of Jack’s New Smile in a library!
Fearless : A Book of Poems
About the Book
Written by: Bradley Harding
Illustrated by: Dan Gremminger
Fearless is an inspiring collection of poems and illustrations created for children with craniofacial challenges. Originally published in 2001 by Children’s Craniofacial Association, the small regional release was immediately embraced by children and families affected by facial difference. This 10th anniversary edition has been redesigned for the eBook platform.
This book can be purchased on the Amazon Kindle store. All proceeds go to CCA.
This book is not currently available though interlibrary loans.
The Adventures of Prickly Pear and Happy Hoglet
About the Book
Written by: Edward Buchanan, MD
Illustrated by: Matthew A. Buchanan
One of two children’s books are written by Dr. Buchanan, part of the Texas Children’s Hospital Craniofacial Team and help children and parents prepare and empower themselves to cope with bullying or teasing and how to deal with emotions of all kinds.
Have you ever thought it was possible to be in control of your feelings? This book is a story about two friends with similar encounters, but very different reactions to them. Come along and join the Prickly Pear and the Happy Hoglet during a day in their lives. See how they react to some very normal situations. Maybe you will remember being there.
This book is not currently available though interlibrary loans.
Pit Bully : The Mental Ninja Awakens
About the Book
Written by: Edward Buchanan, MD
Illustrated by: Matthew A. Buchanan
One of two children’s books are written by Dr. Buchanan, part of the Texas Children’s Hospital Craniofacial Team and help children and parents prepare and empower themselves to cope with bullying or teasing and how to deal with emotions of all kinds.
Getting bullied or teased is an unpleasant and anxiety provoking encounter experienced by children and adults alike. Whereas there is no way to truly prevent bullying throughout life, being in control of one’s reaction to being bullied is the best way to minimize the effect it has and prevent further episodes from happening. Parents can play a critical role in preparing and empowering their children to cope with bullying or teasing. In our story Hector, the black cat, is able to help Pit Bull Paulie and his friends by controlling his emotions and using compassion to solve their problem. Hector has utilized a very powerful tool on his journey to becoming a “Mental Ninja!”
This book is not currently available though interlibrary loans.
The Courage to Be Kind : Who Will You Be, Sam or Ellie?
About the Book
Written by: Jenny Levin & Rena Rosen
In The Courage to Be Kind, authors Jenny Levin and Rena Rosen teach children and parents how to act and respond when they see someone who looks different. Learn with Sam and Ellie as they encounter and interact with several kids in different ways. Ellie is blunt and often offensive. Sam tries to find common ground with each person and provides an example of how to behave.
The dramatization of each difference includes photographs and a list of frequently asked questions so kids and parents can learn about various syndromes together. Through a series of scenarios, The Courage to Be Kind offers a tool to facilitate conversations about kindness and to teach with the art of compassion.
Find a copy of The Courage to Be Kind in a library!
Elmer
About the Book
Written and illustrated by: David McKee
David McKee has woven a story about an elephant named Elmer who is the only elephant in the jungle who is patchwork instead of gray. We are invited to share what happens when Elmer gets tired of being different. This is a story about laughing with, instead of at, something different.
Find a copy of Elmer in a library!
I Like Me
About the Book
Written and illustrated by: Nancy Carlson
Meet Nancy Carlson’s peppy pig—a character who is full of good feelings about herself. Her story will leave little ones feeling good about themselves, too!
“Wonderful in its simplicity, here’s a story that will help kids feel good about themselves.” — Boston Globe
Find a copy of I Like Me! in a library!
It’s Okay To Be Different
About the Book
Written by: Todd Parr
Mary Hassler, mother of Claire, who was born with Apert Syndrome, alerted us to this delightful children’s resource. She says, “The book has vibrant illustrations and very simple words that can be used effectively to generate discussion about all sorts of differences. My 4 and 6 year olds love it.”
Find a copy of It’s Okay To Be Different in a library!
Proud of Our Feelings
About the Book
Written and illustrated by: Lindsay Leghorn
Proud of Our Feelings provides children with an entertaining and constructive way to learn to accept and appropriately express their emotions. It will also help to stimulate discussion and interaction between children and the adults who care for them.
Find a copy of Proud of Our Feelings in a library!
Smile with Simon
About the Book
Written by: Patricia Ann Simon, RN
Illustrated by: Valerie McCord
Simon, a bright, red cardinal, hatched from his shell with a big gap in his beak. The gap made it hard for him to eat. Simon was not strong enough to fly. One day, he accidentally fell out of the nest and couldn’t get back to his family. Patty discovered the little bird and realized he suffered from the same thing as she, a cleft lip. A story of friendship, love, acceptance, and kindness, this playful picture book for children shares the importance a smile has on others. It teaches a powerful lesson-despite people’s differences, we are alike and beautiful.
Find a copy of Smile with Simon in a library!
We Can Get Along: A Child’s Book of Choices
About the Book
Written by: Lauren Murphy Payne, M.S.W., LCSW
Illustrated by: Melissa Iwai
Ages 3-8. In simple affirming words and enchanting illustrations, this book teaches young children to think before they speak or act and to treat others the way they want to be treated. The focus is on kindness, respect, tolerance, and responsibility. What a book! We think the whole world could use a little of this one.
Find a copy of We Can Get Along in a library!
You Are Special : A Story for Everyone
About the Book
Written by: Max Lucado
Illustrated by: Sergio Martinez
Every day the small wooden people called Wemmicks do the same thing: stick either gold stars or gray dots on one another. The pretty ones with smooth wood and fine paint, as well as the talented ones, always get stars. But the ones like Punchinello who aren’t as talented, or have chipped paint, get ugly gray dots. In this heartwarming children’s tale from bestselling author Max Lucado, Eli the woodcarver helps Punchinello understand how special he is–no matter what other Wemmicks may think.
Find a copy of You Are Special in a library!
Young Adult Books
Wonder
About the Book
Written by: R.J. Palacio
Wonder is the story of August (Auggie) Pullman, born with a facial difference that prevented him from going to a mainstream school—until now. He’s about to enter 5th grade at Beecher Prep, and if you’ve ever been the new kid, then you know how hard that can be. The thing is Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
Special note from CCA: You can order a special edition copy of Wonder from the CCA webstore or apply for a discount rate for bulk purchase by contacting the office.
Find a copy of Wonder in a library!
Tales of Grace Series
About the Books
Written by: Judy Ryan
Friendships, self-esteem and fitting-in – all standard desires of young girls. However, when kindhearted 11-year-old Grace Archer was diagnosed 2 years earlier with a not-so-common facial cancer, her life changed forever, and her early adolescent worries elevated by her changed face. Her struggle for confidence and happiness is tested every day.
The cover image to the left is Tales of Grace: A Different Me. It is book one in a four-part series.
This book is not currently available though interlibrary loans.
How I Learned to Rock My Life : The Peter Dankelson Story
About the Book
Written by: Peter Dankelson and Dede Dankelson
Readers will find wisdom from Peter’s ability to live confidently with a facial difference, overcome peer pressure, and courageously face adversity. Adults will draw inspiration from Peter’s fortitude, commitment to being a force for good, and relentless pursuit of his passion.
You will battle with Peter through his thirty-six surgeries, laugh with him as he searches for an ear store, and share in his excitement when he takes the stage with Buckcherry, Jared James Nichols, and others.
This book is both Peter’s story and the journey of how Pete’s Diary evolved from his birth in 2000 to his career as a guitar player.
Find a copy of How I Learned to Rock My Life in a library!
Diary of a Beautiful Disaster
About the Book
Written by: Kristin Bartzokis
Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.
Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones.
Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.
Find a copy of Diary of a Beautiful Disaster in a library!
Ride High Pineapple
About the Book
Written by: Jenny Woolsey
Apart from having a face that is different, Issy is like many other teenagers. She experiences friendship ups and downs, a secret crush, and bouts of anxiety. Issy is also great at drawing and skateboarding.
Written as a raw, truthful, journal, follow Issy in Ride High Pineapple, to find out how she uses the analogy of a pineapple, her friends, and her skateboarding, to overcome the adversities in her life.
Find a copy of Ride High Pineapple in a library!
Ugly
About the Book
Written by: Robert Hoge
When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.
Find a copy of Ugly in a library!
World Enough and Time
About the Book
Written by: Emma C Williams
Anna Jones is an intelligent and spirited girl of 15, whose everyday experiences of growing up are overshadowed by a rare condition called Goldenhar syndrome. While Anna approaches her life with humor and determination, she is haunted by the inescapable fact that she looks a little different from other girls. Despite the support of her friends and family, she remains convinced she will never be loved – especially not by the gorgeous and intelligent Michael.
Anna’s life and schooling is regularly interrupted by a variety of hospital visits, each one of which seems designed to make her feel even more different from the other girls. As she counts down the days until the major surgery that will change the course of her life forever, Anna becomes increasingly doubtful as to whether she will ever be truly normal. World Enough and Time is an often funny, sometimes painful but ultimately uplifting novel about growing up and finding your feet in the world.
Find a copy of World Enough and Time in a library!
A Face for Picasso : Coming of Age with Crouzon Syndrome
About the Book
Written by: Ariel Henley
At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it.
Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement.
Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.
Find a copy of A Face for Picasso in a library!
Turtle Boy
About the Book
Written by: M. Evan Wolkenstein
Seventh grade is not going well for Will Levine. Kids at school bully him because of his funny-looking chin. And for his bar mitzvah community service project, he’s forced to go to the hospital to visit RJ, an older boy struggling with an incurable disease.
At first, the boys don’t get along, but then RJ shares his bucket list with Will. Among the things he wants to do: ride a roller coaster; go to a school dance; swim in the ocean. To Will, happiness is hanging out in his room, alone, preferably with the turtles he collects. But as RJ’s disease worsens, Will realizes he needs to tackle the bucket list on his new friend’s behalf before it’s too late. It seems like an impossible mission, way outside Will’s comfort zone. But as he completes each task with RJ’s guidance, Will learns that life is too short to live in a shell.
Find a copy of Turtle Boy in a library!
Books for Adults
Children with Facial Difference : A Parent’s Guide
About the Book
Written by: Hope Charkins, M.S.W
Each chapter of Children with Facial Difference includes parent statements, reassuring and useful bits of information and insights from parents of children with facial difference. These statements help alleviate feelings of isolation and provide comfort and support. With a foreword by Joseph E. Murray, M.D., a Nobel Prize winner in medicine and a pioneer in craniofacial surgery, this book also includes a glossary of terms, a reading list, a resource list of organizations, and an index.
Find a copy of Children with Facial Difference in a library!
Facial Shift : Adjusting to an Altered Appearance
About the Book
Written by: Dawn Shaw
Your face, and your life, has been radically altered. Accident, military injury, medical condition…the result is the same. You are now having to confront the world with a “different” face, and understandably this has wrecked your self-image and undermined your confidence, leaving you with a thousand questions and concerns including:
•What should I do when people stare at me?
•What are my medical options?
•Wouldn’t it be easier if I just stayed home and didn’t go anywhere?
•And most significantly, How will this physical change affect current and future relationships?
•Will anyone ever be able to love me?
In Facial Shift, author Dawn Shaw addresses those questions and more. Dawn was born with a rare tumor, the removal of which left her face half-paralyzed. She has lived her entire life, nearly half a century, with a different face, yet has been able to lead a happy and productive life. She doesn’t allow her different face to stop her from interacting with the world, and neither should you. A practical, but empathetic book for those grappling with a facial difference
Find a copy of Facial Shift in a library!
Our Altered Life
About the Book
Written by: Charlene Beswick
After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been born with half of his face undeveloped. In seconds, the happy family future they had been planning disintegrated into turmoil and uncertainty.
Laugh out loud funny in places, heart-wrenchingly sad in others, and refreshingly honest at all times, Our Altered Life is Charlene’s wonderful account of how she struggled to forgive herself and bond with a baby she didn’t expect. Follow her transition through grief and anger, challenges and triumphs, loss and acceptance, to love for the life she has now with two children she wouldn’t change for the world.
Find a copy of Our Altered Life in a library!
Reflections from a Different Journey : What Adults with Disabilities Wish All Parents Knew
About the Book
Written by: Stanley D. Klein Ph D. and John Kemp
This is a collection of 40 inspiring short essays by successful adults with different disabilities. Essay authors were asked to write about something they wished their own parents had read or been told while they were growing up.
Find a copy of Reflections from a Different Journey in a library!
Sam : The Boy Behind the Mask
About the Book
Written by: Tom Hallman
Pulitzer Prize winner Hallman tells the life story of Sam, now a teenager, from Portland, Oregon, who was born with a severe facial Hemangioma. All the universal issues about family, fitting in, medical miracles and inner strength are woven into this dramatic real life story. We could not put it down!