Welcoming Children with Disabilities

When Anitra Rowe Schulte gave birth to her first daughter, she wasn't prepared for a  child who suffered from 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 working to create a more welcoming 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.

Wolf-Hirschhorn syndrome manifests itself through low muscle tone, facial differences, congenital heart defects, communication delays, problems ingesting food, seizures, and mobility issues that require a wheelchair. During a Christopher Closeup interview, Anitra recalled that she and her husband, Dan, felt "isolated and alone, and were 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 a community of people who helped them understand the supports their daughter would need.

In addition, Anitra had her Christian faith to lean on. 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, "When my daughter had seizures . . . 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."

As time 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 Dan 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 suffers with physical disabilities, the book shows that her mind and imagination are rich.

Creating a spiritual foundation for Miss E is also a priority for the Schultes. Anitra explained, "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. . . . 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."

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. "He and [Miss E] have a special relationship," Anitra concluded. "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 my heart 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, i'’s everything. It's part of that full family dynamic that makes me feel so blessed."

This essay is a recent "Light One Candle" column written by Tony Rossi, Director of Communications, The Christophers; it is one of a series of weekly columns that deal with a variety of topics and current events.

Background information:

The Christophers