SCOTT AND LANDYN

Friendship and community are two things we often take for granted, but are integral to happiness and healthy living. For people with disabilities, these aspects of life that tend to naturally occur for many, are often hard to come by. In making friendships, we look for those with common interests and who we “fit in” with. However, for children and adolescents with spina bifida, it can be challenging to feel a sense of belonging amongst school and neighborhood peers, especially when difficulties with social cues, like recognizing sarcasm or reading facial expressions, and physical accessibility get in the way. Instead, they may face unkindness such as bullying, isolation, or simply being left behind.

In an effort to help our young people practice independence and work on social skills in a safe environment, the Spina Bifida Coalition of Cincinnati launched an Empowerment Camp nine years ago for 10-20-year-olds where kids and young adults with spina bifida enjoy a weekend engaged in fun activities with others who are just like them. Although the boys had been at the same Spina Bifida Coalition events in the past, it wasn’t until they shared a cabin at this year’s camp in June, that Landyn, 12, and Scott, 11, developed a friendship they both had been seeking. Describing each other as “funny”, the boys were drawn to each other by their senses of humor. Quickly, they realized they had a lot in common, bonding over video games, swimming, and basketball, and a friendship was born. Since June, their relationship has strengthened with regular get togethers and their first sleepovers. Though they live an hour apart, the boys’ mothers, Ashley and Angell, have dutifully helped them stay connected through periodic weekend visits. “Be more persistent with your kids [with spina bifida].” advises Ashley. “Sometimes they may not have a good experience, but you can always reach out to others to help them move forward in making friends.”

Ashley and Angell are also seeing the benefits of this friendship. Watching your child be left out of social opportunities with their peers, can be so hard for parents. It has been heartwarming to see their children engaged in a friendship where they both feel secure with someone who “gets it”. It also makes visits and sleepovers more relaxed for both child and parent, as there are no uncomfortable questions regarding medical supplies, bathroom breaks, or accommodations. On their weekend sleepovers, Angell states, “When Scott’s here, it’s just relaxing. No one has to wonder. They’re basically on the same pace and just get each other.” Both boys are involved in adapted sports teams, Scott playing sled hockey with the Icebreakers and Landyn participating in the Cincinnati Dragons basketball team, and are well liked amongst their peers at school. But like many disabled children, they are often intentionally or unintentionally excluded or forgotten about when it comes to various social activities outside of school. Even recess, which most children look forward to, can be a source of anxiety or discomfort for a child with spina bifida due to mobility issues and being unable to keep up with their peers. Landyn and Scott naturally understand each other’s limitations and therefore are able to find activities they can both easily enjoy without sparking any feelings of embarrassment or being different. Of Landyn, Scott states, “Differences don’t matter [with us]. He understands me. He is very funny with his jokes that he does at random times and makes me laugh.” It is a unique understanding that is not shared with their able-bodied peers, which emphasizes the value of programs such as the Empowerment Camp.  “For all children, but particularly those with chronic health needs, camp gives a place for kids to simply be kids while learning about independence, friendship, and the limits of his/her own bravery.” says Marta Getz, licensed social worker for the Center for Spina Bifida Care at Cincinnati Children’s. “Lasting friendships with those who have similar needs can help with coping as a teen and lead to confidence as an adult.”  

Both families accredit the SBCC Empowerment Camp for forging this friendship. Describing camp, Scott states, “I feel happy [while at camp], because I know there are kids like me and kids that are different than me and I’m able to learn about them.” Because while Landyn and Scott enjoy laughs and fun together, especially on their new project creating a YouTube channel called “Spice Guys” where they will sample hot sauces on video, they have also become an invaluable support to one another. Facing surgeries, doctor’s appointments, setbacks, and chronic pain, they lean on each other through the hard times and find comfort in knowing they are not alone. At the end of the day, disabled or not, that yearning for friendship and acceptance is something that connects us all.