Inspired by Daughter, Mom Writes Children’s Book to Promote Inclusivity

Northwestern Medicine
Pediatrics December 10, 2021
Anitra Rowe Schulte‘s 9-year-old daughter, Elsa, has a rare chromosomal disorder called Wolf-Hirschhorn syndrome that impacts development. For years, Elsa has undergone therapy at Northwestern Medicine Marianjoy Rehabilitation Hospital to improve her physical mobility, including her ability to walk, as well as her communication abilities.

As a picture book author who often reads stories to her three daughters, Anitra longed for more books featuring children who have disabilities. She made that a reality by writing “Dancing With Daddy,” an illustrated children’s book that features Elsie, a young girl with the same syndrome as Elsa.

“I want other kids to see children and families who live life the way we do, with the same challenges, joys, daily routines and equipment,” Anitra said.

For Anitra, it is important to present the main character in situations that are relatable to other children. In the book, Elsie is excited about going to a father-daughter dance. When a winter storm is headed their way, she worries that she won’t be able to go to the dance.

“Tapping into a fun childhood experience like a father-daughter dance helps you relate to the main character more quickly and understand the emotions she’s having,” Anitra said.

Ginny Girten, a physical therapist at Marianjoy Rehabilitation Hospital, has worked with Elsa since she was three years old and describes the book as a labor of love by Anitra. Girten is excited that other families who have children with disabilities will see themselves represented on the pages.

“As we work with patients like Elsa, we are so delighted that her mom is helping develop a resource that will serve the patients we care for,” Girten said. “Kids who read this book will find they share common ground with others regardless of what our bodies can and cannot do.”

Anitra knows from personal experience that children have many questions about Elsa and her equipment. Her wheelchair and feeding tube are shown in the illustrations, as well as her Pragmatic Organization Dynamic Display (PODD) book, which contains various symbols and words. Elsa is mostly nonverbal, so she uses her PODD to communicate with family, friends and support workers.

“I wanted to present her tools in a non-didactic way,” Anitra said. “I wanted her daily life woven into the story. The book helps facilitate some questions and helps kids explore their curiosities.”

In the six years Girten has worked with Elsa, she’s seen her reach developmental milestones, such as moving from sit to stand with minimal assistance or being able to walk farther with her walker, and celebrated them with her. She sees much of Elsa’s personality shine through in the book.

“One of the things I’ve always enjoyed about Elsa is she really does like when people understand she has opinions and choices about things,” Girten said. “We all have our own favorite colors or music, and I think this book will help kids see they can have something in common with everyone.”

For more information on pediatric rehabilitation services at Marianjoy, visit the Marianjoy Pediatric Rehabilitation Program.

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