“It's Really a Roller Coaster”: Experience of Parenting Children with Developmental Disabilities

Abstract

The aim of this research was to explore the experience of parenting a child diagnosed with a developmental disability. The in-depth interviews were semistructured and open-ended, covering topics such as positive and negative experiences and time demand in raising a child with a developmental disability, their effects on family relationship and on physical and mental health of the parents, and the strategies for managing the negative experiences. Overall, the participants indicated that parenting a child with a developmental disability is both challenging and rewarding, depending on the circumstances facing parents in a particular day. The findings are interpreted in five thematic structures: (1) negotiating joys and sorrows, (2) physical and mental exhaustion, (3) negotiating with family matters, (4) social stigma, and (5) hope in the midst of despair, each of which comprised several subthemes/categories. The discussion includes implications of the findings.

KEYWORDS:

• challenges
• child
• developmental disability
• parents
• rewards
• stigma

ACKNOWLEDGMENTS

I thank Sara Dorow and the anonymous reviewers for their helpful suggestions on earlier versions of this article. Sincere thanks are due also to the parents who took part in this research project.

Notes

Benson (2006) selected 18 different symptoms, characteristics, or behaviors commonly observed in children with ASD: receptive and expressive communication difficulties, hyperactivity, rapid mood swings, shrieking or screaming, tantrums, social withdrawal, lack of eye contact, self-stimulatory behaviors, repetitive behaviors, sadness or depression, sleep problems, difficulty adjusting to change, noncompliance, limited food preferences, pica, self-injury, and aggression toward others.