COMMUNICATION, SOCIAL-EMOTIONAL DEVELOPMENT AND PARENTING STRESS IN CORNELIA-DE-LANGE-SYNDROME

Cornelia-de-Lange syndrome is a dysmorphogenic disorder characterized by multiple congenital abnormalities, and in most cases, severe cognit ive limitations. Parents of 27 children with Cornelia-de-Lange syndrom e completed psychological questionnaires concerning communicative and social-emotional behaviours, and reported on their parenting stress. O nly four children were able to use speech, but most of the older child ren expressed needs through non-verbal means. Feeding problems, over-a ctivity irritability and stereotyped behaviours were characteristic fo r the majority of the group. Self-injurious behaviours occur in more t han 40%. Parenting stress is very high, especially in parents of older children.