BELIEFS OF PROFESSIONALS ABOUT PEOPLE WITH SPINA BIFIDA AND HYDROCEPHALUS

Andrej Drdul and Terézia Drdulová

Knowledge is power, community is strength and positive attitude is everything.

Lance ARMSTRONG

  1. Spina bifida or hydrocephalus does not define the child.Their personality is made up of a unique set of characteristics, of which only one part is disability. How his disability affects his development and future is decided at an early age and based on the right information and support which his family receives at that time.
  2. Many children and young people with spina bifida and hydrocephalus are redefining the picture of these disabilities today. Developments in medicine, complex stimulation and aids enable these children to develop fundamentally differently and acquire skills than they have in the recent time.
  3. Parental counseling should be provided by experienced professionals. Counseling should provide access to the full range of topics and issues related to life with spina bifida and hydrocephalus based on assessment.
  4. Parents after the birth of a child with spina bifida and hydrocephalus deserve the time needed to adapt to a new situation.
  5. Parents are the ones who make the decisions. Professionals should treat parents with respect. At any time, parents should feel they have a choice.
  6. The quality of life of people with spina bifida and hydrocephalus depends on many factors. Most adults with spina bifida emphasize that it is up to them to judge their quality of life.
  7. An association of people with the same diagnoses is a rich source of information, experience, contacts and can provide support.
  8. Multidisciplinary cooperation is more effective, economically advantageous and preventive.
  9. Experts from various fields offer their expertise, opinions, and opportunities. At every stage of development, it is important to support and develop the functional abilities, independence, and high self-esteem of the child with spina bifida and hydrocephalus.

Source: Multi-IN GENERAL GUIDELINES for inclusive education and multidisciplinary care of leaners with spina bifida and hydrocephalus