Typical behaviours to be recognised

Everyone related to the care or teaching of RP-children should be able to recognise certain typical behaviours caused by visual field changes or loss of dark adaptation.

  • if a child who previously has run up and down the stairs , starts to look at his/her feet when going down, sensitivity of the lower part of the visual field may have decreased and should be reassessed.

  • if a child misunderstands spoken information or does not pay attention to signing in twilight, visual adaptation to low luminance levels may have become delayed or decreased. The child may also have started to avoid playing outside in the evening, which should not be interpreted as avoiding group activities.

  • if a teenager walks backward when someone starts to sign to him/her, the likely explanation is a limited visual field, rather than emotional problems.

When adaptation to lower luminance levels becomes slow in teen-age, RP-children should not have their breaks outside on sunny days because it may take too long before they start seeing again in the class room. At some schools all children stay inside during the whole morning and during the afternoon with a longer break for their lunch. Corridors need sufficient illumination and an RP-child should have a torch/flash light available when sent to get something from a poorly lit place. Both teachers and classmates should learn to live with the child with a limited visual field, clumsiness and slow visual adaptation. Rehabilitation often focuses only on the child, yet people around the child are also in need of education and help to learn to deal with their emotions and to make sensible decisions.

Children with Usher Syndrome have much in common with hearing RP- children. Deaf Usher children are, however, members of the deaf community and deaf culture that we should learn to know in order to understand their communication and ways of thinking. Sign language, like any language, opens a door to a different culture and teaches us an effective, logical way to express thoughts. Studies of sign language can be recommended to all teachers and therapists, to doctors as well, as part of their training in communication.

When discussing the child's activities we should remember the great variation in the progression of the visual loss in RP. There are persons with RP who can play badminton in their thirties and other persons in the same family who have small tubular fields by the age of twenty. Careful assessment of visual functioning is essential if we want to give the child, the family and the school correct information for planning of the Individual Educational Program (IEP) and the future.

Previous Chapter Index Next Chapter