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Growing Up with Spina Bifida

Children are faced with difficult situations at school with their peers and personally.  While they try to cope, often parents are faced with the hard questions from their child and situations they are unfamiliar with.  SBAK noticed the need in our community for a program that addressed the need of parents and children growing up with Spina Bifida. 

This mini-series will address the greatest needs and issues our kids face as they grow up with Spina Bifida. Parents are encouraged to join SBAK for an opportunity to learn and discuss these important topics, while the children get to experience hands on learning about their Spina Bifida.


Topics discussed in the past include:

Let’s talk about Spina Bifida

Parents will privately discuss how we talk with our kids about Spina Bifida and answer their tough questions. Children will learn more about how to explain Spina Bifida to friends and grown-ups, which is the foundation for self-advocacy.

Making Friends (Social Skills)

Many children with Spina Bifida have difficulty developing meaningful friendships and picking up on unspoken social rules. Children will learn important social rules for making and keeping friends. Parents will privately discuss how to support our children in developing quality friendships.

Learning Differently (Executive Functioning)

Children with Spina Bifida are often very intelligent but have difficulty paying attention, staying organized, and being flexible. If this sounds familiar, come learn more about how to build these skills for success in academics and life.

Taking care of our bodies (Nurturing Independence)

Parents are experts on caring for our children’s complex needs, but as our children grow, they must learn how (and why) to begin the baby steps of managing their own medications, appointments, and hygiene.


Growing Up with Spina Bifida sessions are held in Lexington and Louisville, creating the opportunity for hundreds of individuals to interact and learn in this great program.  Navigating obstacles is one of the most important tools SBAK can provided parents and individuals affected by SB.  With this information, transitioning into independency and living with a positive outlook will be more than beneficial, it will be life changing.