Posted by When Anitra Rowe Schulte gave birth to her first daughter, she wasn’t prepared for a child who was disabled, much less one who has a rare chromosomal condition called Wolf-Hirschhorn syndrome. With time, prayer, research, and a supportive community, Anitra has built a fulfilling life for the daughter she dubs “Miss E” online, while also looking to create a more welcoming and inclusive world for other children and families dealing with disability.
That’s one of the reasons she wrote the children’s book “Dancing with Daddy,” which was inspired by an experience in her family’s life – and which recently earned a Christopher Award. We discussed it on “Christopher Closeup” (podcast below).
Wolf-Hirschhorn syndrome impacts one in 50,000 births, explained Anitra. It usually manifests itself through low muscle tone, facial differences, congenital heart defects, communication delays, problems ingesting food, seizures, and requiring a wheelchair to get around. Anitra notes that she and her husband, Dan, felt “isolated and alone, and were really struggling to find resources” during Miss E’s early days. It wasn’t until Anitra was referred to the website WolfHirschhorn.org that they “found an incredible community of people who were sharing the details of their experiences in a way that helped us understand some of the supports that our daughter was going to need, where to go, what things to look for in terms of medical complications. I must say, that was the hardest part. Loving [Miss E] has always been easy. But I wanted to do right by her in terms of her medical needs because they were frightening at first. She had a heart defect. It did close up, so that was good. Feeding was challenging. You want your baby to grow and to thrive, and she had difficulty swallowing. So our journey to the G-tube (feeding tube) was hard.”
Thankfully, Anitra had the Christian faith in which she was raised to lean on for support. Every day, she would pray, “God, can You please help me through this day? I want to help my girl grow. This is outside of what I feel like I can do. What can You do? How can You take the wheel here?”
Anitra added, “As a first time parent, I didn’t even know about parenthood in general. But when my daughter had seizures in those early years and her life feels like it’s in your hands, it was such a relief to know it’s not. She was in my hands, but she was also in His hands…It gave us a sense of peace to know that.”
As the years passed, Miss E started being fed through a feeding tube. She has struggled with speech delays, but has learned to communicate through gestures and the PODD Communication Book. And she uses a wheelchair to get around. Perhaps most importantly, Anitra and her husband went on to have two more daughters, who have become Miss E’s biggest supporters and companions.
That’s evident in the illustrations in “Dancing with Daddy,” which was inspired by Anitra’s husband taking all three of their daughters to a school dance. The book highlights Miss E picking out a dress in the store, eating dinner with her family, and of course dancing with her father. Though Miss E has physical disabilities, the book shows that her mind and imagination are rich.
When some people see Miss E’s physical challenges, they assume that she is mentally disabled as well. Anitra is working to move society beyond that assumption. She explains, “Presuming complete competence is the way we have to go. Anything else can be infantilizing to that child. So if you see someone and they’re not saying hello back to you, that doesn’t mean that they haven’t acknowledged that you’re standing next to them and interacting with them. Their communication style might just be different…A lot of times people will come up to us in our community or at the park or at the library and ask me if my daughter can talk. It’s something kids are always very curious about. So one of the things I enjoy most about visiting schools is talking to kids about different kinds of communication. I can wave and say, ‘What did I just say by doing this?’ This is a gesture that means hello. So I really am hopeful that all children can see and understand that nonverbal communication can still express all those same things.”
To further that goal, Anitra now works for The Nora Project. She explains that it’s “an organization that promotes disability inclusion, and it’s primarily in the school setting. They have developed this incredible social-emotional learning and education curriculum that helps people understand disability culture, disability advocacy, and history. Then they use that to create conversations about empathy, understanding one another, and experiences for kids to be together and learning about each other, fostering friendships. That work extends a bit beyond the school setting too, into…communities.”
When Anitra began taking Miss E to Nora Project events, the youngster got to experience the joys of socialization by playing games and making new friends with other kids her age. The impact of these gatherings was also immense for the community in general. Whereas before, people would often be afraid to approach Miss E because they didn’t know how to react to her, The Nora Project taught them to be more welcoming and simply come up to say hello. “That’s exactly how friendships form, when we lean into each other,” said Anitra.
Creating a spiritual foundation for Miss E is also a priority for the Schultes. Anitra explained, “We have a unique dynamic when it comes to church. My husband is Catholic…and we go to Mass. We also go to another church that is non-denominational Christian…that has a program that is supportive of individuals with disabilities and that [offers] support during Sunday school lessons. They also provide a respite program once a month. So we’ve had this beautiful balance of both. [Miss E] did go through the process to have First Communion and has done her Confession…Her augmentative communication has made that possible…We feel very strongly about making sure she has a rich religious life. Have you heard of Catechesis of the Good Shepherd? It’s like a Montessori approach to teaching Sunday school that is used in the Catholic Church. My mother-in-law is a catechist, so she has led my daughter through Zoom lessons in preparation for her First Communion.”
All of Miss E’s achievements would not have been possible without Dan’s love and support. He doesn’t let challenges stand in their family’s way, whether it comes to outdoor adventures or new experiences, such as taking all three of his daughters to their school’s Father-Daughter Dance.
“He and [Miss E] have a very special relationship,” Anitra said. “Her verbal language is starting to emerge. And at bedtime, it’s just Dada, Dada, Dada….When I see them dancing together and spending time together, it warms up my heart so much because I can tell how much my daughter loves it. For the two of them to have those special moments together, from a mom’s perspective, it’s everything. It’s part of that full family dynamic that makes me feel so blessed.”
Regarding her hopes for children and adults who read “Dancing with Daddy,” Anitra concluded, “If you happen to pick it up to read it…I hope that you are able to see all of the wants and desires of the main character and understand that kids with disabilities have all of those same feelings. It’s my hope that if children are reading this story and they aren’t disabled, that they will have an understanding that I didn’t have growing up about the things that make us all the same. And I really hope that kids with Wolf-Hirschhorn and other similar syndromes that might require similar supports, that they see themselves – and that they can celebrate who they are, as they definitely should.”
(To listen to my full interview with Anitra Rowe Schulte, click on the podcast link):
Light One Candle - the blog of The Christophers 