Having spina bifida or hydrocephalus does not mean that an individual will not be able to enjoy the everyday things in life, however, there are special considerations for living with spina bifida and/or hydrocephalus that most able-bodied persons would not consider on a daily basis: bowel and bladder management, checking your skin, finding appropriate mobility aids, accessibility issues, watching for signs of shunt malfunction, and more.
Promoting self esteem and positive self image in individuals with spina bifida or hydrocephalus will greatly enhance their quality of life. The medical and lifestyle issues associated with spina bifida and hydrocephalus are lifelong challenges, but they are manageable over time: first by parents, and then by the individual as he develops independence and moves from childhood into adulthood.
Development of self esteem and self image begin during infancy and continue throughout life. Individuals with spina bifida and hydrocephalus have many different experiences and capabilities than their peers, and may see themselves as being very different. Self esteem developed in early childhood and reinforced by successful experiences over long periods of time will enhance an individual's quality of life.
For parents, it is important to encourage your child in ways that will promote a positive self image:
- Help your child to understand her disability, what causes it, and how it affects what she does. This will enable her to explain it to others. Work with her to develop strategies for dealing with teasing.
- Encourage the development of effective social skills through interests, hobbies and activities. Provide many opportunities for wide-ranging social experiences with both disabled and able-bodied peers.
- Ensure your child's needs are understood and met within the school system, both academically and socially.
- Encourage your child to be independent and take on responsibilities that are within his capabilities.
Doing things for and by yourself is important to the development of a positive self image. Depending on an individual's abilities, independence can mean many different things, but it always includes a large set of skills that need to develop gradually and should be fostered beginning as early infancy. All individuals should be encouraged to participate in each activity to the extent of their ability.