Background. Medical problems of individuals with intellectual disabilities (ID) have been increasingly recognized in recent years. However, less attention has been give to the needs of individuals in different diagnostic groups. The purpose of this study was to explore the healthcare experiences of parents of children with fragile X syndrome in Ontario. The main objectives of the study were (1) to identify the challenges and successes parents face when accessing healthcare services for their children with ID; and (2) to identify suggestions and strategies to enhance access and quality of healthcare services for children with ID. Methods. Qualitative data were obtained from parents during a focus group conducted with five mothers, two fathers and one foster mother of children with fragile X syndrome. Results. Four main themes emerged which described parents' experiences when accessing healthcare services for their child and/or children with fragile X syndrome. They include: (1) sensing something is not right; (2) negotiating the healthcare system; (3) dealing with healthcare professionals; and (4) parents as active agents. Conclusions. Parents made a number of suggestions of ways that healthcare professionals could deal more effectively with parents. They recommended that (a) doctors need to receive more education about intellectual disabilities; (b) doctors need to take extra time to provide appropriate information and care for children with fragile X syndrome; and (c) patience is a necessary trait for all healthcare professionals who provide care for children with special needs.