Individuals who are affected with spina bifida are faced with many difficult challenges. The social factors are different in each age group (newborns to infants, toddlers and preschoolers, school aged children, adolescences, teenagers, and adulthood). Nevertheless, finding resources in your community, knowing what to expect, and planning for the future can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family. Spina bifida affects the entire family. People who are affected by spina bifida get around in many different ways. This may include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs. Some people with spina bifida have difficulty picking up the verbal and non-verbal cues necessary for social skills. Some of the areas that might be difficulty for them are talking over differences without getting angry, persistence when facing frustration, taking turns while talking, understanding social rules, demanding immediate attention, and waiting when necessary. However, finding resources, knowing what to expect, and planning for the future can help. No two children with spina bifida are exactly alike. Children’s health issues will be different for each child. Some will have issues that are more severe than other children. With the right care, children born with spina bifida will grow up to reach their full potential. NEWBORNS AND INFANTS
In many cases, infants and children with spina bifida require early and frequent hospitalization. This can interrupt normal social development. The challenge is to balance medical needs with the need to let a child develop into a confident, self-sufficient and independent adult. Regular and physical activity is important for all babies, especially for those with conditions that affect movement. There are numerous ways for babies with spina bifida to be active. Newborns and infants can be active by: * playing with toys, such as activity mats;
* enjoy parks and recreation areas;
* participating in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities, which is a free program in many communities; and * do exercise with physical therapist.
TODDLERS AND PRESCHOOLERS
Life with a toddler or preschooler is both fun and challenging. These young children experience huge mental, social, and emotional changes. They have a lot of energy and enthusiasm for exploring and learning about their world and becoming independent. Since developing independence can be particularly trying for children with spina bifida, parents should begin helping their child develop independence early in childhood. The achievements can be measured one by one; building blocks are an effective way to think of them. In the early years, moving about and exploring things with the eyes, mouth and hands are the elements of independence for the toddler. Parents and other caregivers can help them become more active and independent by: * educating the child about his or her body and about spina bifida; * encouraging the child to make choices, for example, have them choose between two items of clothing; * asking the child to assist with daily tasks, such as putting away toys.
Children with spina bifida might require extra help at times. It is very critical that children be given the opportunity to fulfill a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents must become skilled at learning the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while simultaneously not giving the child tasks that cannot reasonably be completed―which might decrease their child’s confidence. School aged
School connects children regularly with the...