Ollie is a 4-year-old preschool boy born with a malformation of his spinal cord and vertebrae, a condition identified as caudal regression syndrome. This has resulted in difficulties with motor control and movement in his lower limbs.
When Ollie’s mother was pregnant with him, she and her husband found out that their child would be born with this significant disability. His mom, Demi, states that although there was a lot of time to think about it and prepare for his birth, many questions remained after he was born.
Early on, Ollie began receiving physical therapy services to improve his strength and mobility. Today, he exhibits above-average speech, language, and small motor manipulation skills. By his first birthday, he began using a wheelchair. He is involved in the public education system, and Demi focuses on maintaining a positive, productive relationship with his school. When his wheelchair was broken, she collaborated with staff so he could continue attending school and move and play on the ground, even letting him move around outside in the dirt. The school has also provided an adaptive bike for Ollie.
Ollie and his family have been presented with some overwhelming challenges. Demi shared that both she and her husband also struggle with health issues of their own. Additionally, they have a toddler with cerebral palsy.
In many cases, children with caudal regression syndrome undergo surgery to have their lower limbs removed. Ollie’s parents have determined that this is not a decision they are willing to make for him. Currently, he has an incredible spirit for engaging in a variety of climbing and play activities. On any given day, he can be observed independently navigating a play structure and interacting with children of all ages. Demi describes him as one of the “popular kids” at school as he actively seeks socialization. While playing in the park, Ollie easily initiates conversations with all children playing around him.
Learning to Adjust to Life with a Disability
As life unfolds for Ollie, his mother describes a process of love, acceptance, and hope. She chooses to believe that he will grow up to drive a car and move out of his parents’ home. Although he has expressed awareness of his limitations and compared his skills to others, she helps him focus on what he can do. She carefully and thoughtfully chooses the language she uses with Ollie. While addressing his desire to be around others, she avoids the term “bigger kids” because everyone is bigger than Ollie. Instead, the words “older kids” are more effective. Demi is a strong advocate for Ollie, seeking to ensure that he is treated the same as other children. Although modifications need to be made during his school day, she emphasizes the importance of her son “having pride in his body” and readily engages others to promote this attitude in him.
Throughout the everyday challenges, Demi fosters a sense of gratitude in Ollie, teaching him to say “please” and “thank you.” Her interactions and expectations for Ollie have facilitated self-confidence and planted seeds of empowerment. She wants him to believe that he can accomplish whatever he chooses to dream about. This requires her to allow him to make mistakes and feel the hurt and disappointment of failures. Demi believes this philosophy will enable him to learn life lessons, and she does not try to protect him from all negative experiences. “I have to let him sort out life’s dynamics,” she states. Recently, however, she has noticed that Ollie has expressed feelings of low self-esteem.
Ollie’s Goes Viral
On a trip to Target when Ollie was only two years old, he became captivated by an enlarged photograph of a ten-year-old boy modeling for the store’s adaptive clothing line. The young boy was also in a wheelchair, and when Demi saw her son’s fascination, she snapped a photo of him studying the ad. It was the first time she realized he felt different and excluded from others. After the image went viral on social media, Kelly Clarkson invited Ollie to appear on her show. The episode proved meaningful for Ollie, the young Target model, their families, and all of Ms. Clarkson’s viewers, portraying the profound impact of inclusion, representation, self-acceptance, and peer support.
Likely a result of the loving, supportive, and encouraging environment Ollie is raised in, he has shown an active interest in sports. With ongoing improved upper body strength, he participates in swimming and gymnastics and has shown an interest in wheelchair motorsports. Demi has also identified the importance of taking part in these activities with his peers, especially since she hasn’t been able to find any adaptive sports programs for children under seven in her community.
In the spring of 2022, Demi established a small group called the Arizona Junior Disabled Friends, which sponsors social and recreational activities for families. Peer support among families of children with disabilities is critical; as Demi states, “People need others who are in their shoes.” With two sons with disabilities, Demi and her husband have learned to lean on others and surround themselves with people who share their challenges. This energy and focus on expanding Ollie’s world are what make his mother such a force for change within the disability community.
Continual Barriers to Daily Life
Throughout the years, Demi and her husband have experienced numerous barriers to daily life that most people take for granted. When they first tried to obtain a wheelchair for Ollie, the lack of options and support from their healthcare provider resulted in skin breakdown. Shriners Hospital for Children stepped in to provide Ollie with both a manual and a power chair; however, transporting them in a vehicle remains an ongoing issue. Due to elevated costs, acquiring an adaptive vehicle can be insurmountable for any family. Demi has also found that although the state provides for pediatric therapy services and respite care, finding quality professionals willing and able to adapt to the family’s individual needs can be challenging.
Experiencing Caring Support for Advocacy Issues
For Demi and her family, the most important element of advocacy is surrounding themselves with others, including extended family and caring community members. As she states, “whatever we need, whether it is friendship, physical, or emotional support,” this is the key to thriving as a family. Although it has sometimes been hard for her to ask, she expresses gratitude for having others help her and teach her children to focus on what they can do, not on their limitations. Demi states that the most challenging aspects about being an advocate are that everyone’s needs are different, there is no instructional manual, the system can be very narrow-minded, and it is easy to often second guess yourself.
Disability in an Ableist World
Many people with disabilities experience ableism or favoritism toward non-disabled people. Demi continues to focus on the rights of children with disabilities, ensuring their needs are met as necessities and not treated as luxuries. She has joined the Board of The International Sacral Agenesis/Caudal Regression
Association and aims to make a difference for people living with the condition worldwide.
Although we may all be limited in our ability to change the world, Ollie’s family and community demonstrate that we are called to do whatever we can. With the incredible foundation of love, acceptance, and goal setting that Ollie has experienced, he is an example of someone destined to live up to his fullest potential. We also wouldn’t be the slightest bit surprised to see him on TV again one day, perhaps as a Paralympian!
Editor’s note: We first met Ollie and his family at Abilities Expo Phoenix, where he was one of our lucky winners of an Airtime Watertime Floater! We hope you’ve enjoyed swimming and playing in the water, Ollie!
Follow Ollie and his family on Facebook at Ollie’s World.
Airtime Watertime designed the Floater to work for every person in every condition — so you can feel safe, confident, use less sunscreen, and connect to nature and all your favorite water sports with pure joy.