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Our “Blue Rose”— a parent's experience of tuberous sclerosis
Author(s) -
Bond John
Publication year - 1984
Publication title -
journal of the british institute of mental handicap (apex)
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.633
H-Index - 39
eISSN - 1468-3156
pISSN - 0261-9997
DOI - 10.1111/j.1468-3156.1984.tb00184.x
Subject(s) - publicity , narrative , tuberous sclerosis , psychology , medicine , developmental psychology , psychiatry , art , political science , law , literature
We have two children, Joanne and Carly. Joanne is a normal, healthy child who attends the local primary school and is making good progress. Carly is mentally handicapped and suffers from a genetically based illness called tuberous sclerosis. She attends a special school and receives additional care and training. I decided to write this narrative in a simple way, and as a down to earth account of family life with a mentally handicapped child. I would like professionals to read it, and maybe enhance their understanding of situations; parents, to show them that they are not on their own; and those not connected with mental handicap, as this section of health care needs all the positive publicity it can get …