The role of the special educator and rehabilitator with a child with a rare disease

Abstract

In the case of a child with a rare disease the role of the special educator and rehabilitator is important if in addition to the primary disease the child is affected by motor, sensory, mental or emotional deficiency. The special educator and rehabilitator participates in the discovery on their first visit to the health institution. For each child the special educator and rehabilitator prepares a file with all the relevant data, takes anamnestic data, or complements it, to get a complete picture of the problem, and inputs data from the observation. S/he collaborates with members of the professional team. S/he provides advice, assists and works with the parents. S/he assesses the psycho-motor abilities of the person and how the person functions in the environment. The special educator and rehabilitator performs the following assessments: assessment of dominant lateralization; assessment of psycho-motor abilities of the upper extremities; assessment of psycho-motor abilities of the lower extremities; differentiation of the motor abilities of the fingers; assessment of the possibilities for maintaining the equilibrium of the body; assessment of coordination of the upper and lower extremities in rhythm. The special educator and rehabilitator assesses and examines the praxical organization, specifically melokinetic, ideomotory, ideatory and constructive praxis. This includes assessment of the graphomotoric as a practical activity through testing for quality of lineation, graphomotoric array through analysis of the maturity of the manuscript and the disgraphy of the manuscript. Gnostic organization is examined through assessment of knowledge of body parts, assessment of knowledge of lateralization on themselves and others, assessment of experience and orientation in space and time. Practognostic organization is examined with tests for imitation of movements. Evaluation of the organization of speech through the test of articulation on voices, semantic test and evaluation of lexical abilities and dyslexic reading. Assessment of the organization of cognitive functions where thought operation is expressed, and the special educator investigates the level of comprehension of: serialization, classification, correspondence and conservation. At the end, the child's behaviour is examined. Based on the data obtained, a plan and a strategy for further treatment is developed. After a certain period of time the child is re-examined (evaluation) and we check whether are there any advances in education and rehabilitation. The special educator and rehabilitator is in constant contact with the parents for certain problems that the children have with social adaptation, and they build strategies for future activities.