The Early Learning Institute (TELI) | May 9th, 2017 |

Important Resources for Children with Spina Bifida

Did You Know that Approximately  1 in Every 1000 Children are Born with Spina Bifida? 

Spina Bifida is an abnormality of the nervous system that occurs in a baby’s development during the first month of pregnancy.  It is often defined as a neural tube defect or a gap in the fusing of the neural tube that encloses the spinal cord.

What Challenges are Faced by Children with Spina Bifida?

For children diagnosed with Spina Bifida, the challenges they experience may vary in part based on the level of lesion. Children experience varying mobility and learning disabilities. Parents of a child with a disability often spend many hours in hospitals and physicians offices. These experiences are often stressful and can contribute to a parent’s decision to not let their child play freely for fear of them getting hurt. While play time may seem trivial as compared to these basic necessities, it is, in fact, critical to a child’s social and physical development.

What Supports are Available for Children with Spina Bifida and Their Families?

Tricia Reesman, Manager of Youth Services for the Spina Bifida Association of Western PA (SBAWP), helps parents to navigate the support system for their child.  “The SBAWP is a nationally recognized, charitable, nonprofit provider of information and direct services to children and adults with spina bifida and their families, ” notes Tricia. “We annually serve nearly 1000 children, teens, and adults living in 28 counties within Western Pennsylvania and portions of New York, Ohio, and West Virginia. We place special emphasis on offering age appropriate programs and services that support each individual through their developmental milestones.”

The Association offers a number of programs and services including  the Blueprints Family Networking Group that provides families an opportunity to meet others who understand what they’re going through, providing a time to share and  exchange experiences.” We  have about 15-20 families active in our program who gather on a monthly basis  to participate in structured play for their child with other like children. It offers the children time to develop social, motor, sensory, and cognitive skills by interacting with peers in a fun and stimulating environment. This occurs while the parents, periodically, listen to outside professionals about a number of supports and services available to their child,”  shares Tricia.

Early Intervention Provides an Important Foundation

One of the key services that Tricia connects parents and children with is Early Intervention services. “Often children with Spina Bifida have developmental delays that if addressed early, can make an enormous impact on their future. Early Intervention can provide a strong foundation for our children to help them with physical challenges and learning disorders,” notes Tricia.”Early Intervention services including physical therapy and occupational therapy support a child on their way to achieving key developmental milestones.”

“We view the Spina Bifida Association of Western PA to be a valuable resource for families,” comments Becky DiLettuso , Executive Director of teli . “In addition to their resources, programming and family support network, they also work to bring awareness to doctors, health care and education professionals regarding Spina Bifida and the value of Early Intervention.  There is no cookie cutter program available to address every child’s needs, however, identifying the issue and taking action early is of the upmost importance in the life of a child”.

Learn more about the Spina Bifida Association of Western PA

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