University of Northern Iowa UNI ScholarWorks Dissertations and Theses @ UNI Student Work 2016 "Joy for what it is": Narratives of two mothers on raising their children with disabilities Zeina H. Yousof University of Northern Iowa Let us know how access to this document benefits ouy Copyright ©2016 Zeina H. Yousof Follow this and additional works at: https://scholarworks.uni.edu/etd Part of the Special Education and Teaching Commons Recommended Citation Yousof, Zeina H., ""Joy for what it is": Narratives of two mothers on raising their children with disabilities" (2016). Dissertations and Theses @ UNI. 345. https://scholarworks.uni.edu/etd/345 This Open Access Dissertation is brought to you for free and open access by the Student Work at UNI ScholarWorks. It has been accepted for inclusion in Dissertations and Theses @ UNI by an authorized administrator of UNI ScholarWorks. For more information, please contact [email protected]. Copyright by ZEINA H. YOUSOF 2016 All Rights Reserved “JOY FOR WHAT IS”: NARRATIVES OF TWO MOTHERS ON RAISING THEIR CHILDREN WITH DISABILITIES An Abstract of a Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree Doctor of Education Approved: ________________________________ Dr. Amy J. Petersen, Committee Chair ________________________________ Dr. Kavita Dhanwada, Dean of the Graduate College Zeina H. Yousof University of Northern Iowa December 2016 ABSTRACT The purpose of this study was to explore the experiences of two mothers of children with disabilities on parenting their children and navigating the world of disabilities. For many parents, the diagnosis of a child with disabilities represents a form of interpersonal loss through the loss of the imagined child. Mothers are often identified as the primary caregivers of their children with disabilities and are often at the front-end of seeking, providing, and advocating for medical, education, and social services. Employing qualitative research methods, autoethnography and narrative inquiry were used to reveal the mothers’ experiences. Through conversational interviews and journaling, data was collected for the scope of the study. The findings reaffirmed the educational and social challenges that stem out of parenting a child with disabilities. The mothers however, did not cease to address the myriads of joy and growth that they experienced as a result of parenting their children. The mothers discussed the different roles that they have assumed throughout their journeys indicating that their parental role always took precedence over all other roles. The results of this study offer a number of implications for educators, service providers, and fellow parents. Of these implications, the need for educators and service providers to envision possibility and capability rather than be restrained by medical diagnosis and labels. Educators and service providers must view the child as a whole while valuing input from the parents on the children’s needs and capabilities. Open, honest, and ongoing communication and collaboration among the educators, service providers, and parents is key in providing children with disabilities the services that best meet their needs. This study also highlighted the need for parents of children with disabilities to see for their own physical and mental health for it is critical in maintaining their strength to resume their parenting journey. Finally, parents of children with disabilities are encouraged to seek support from support groups and networks that may provide them with assistance and help get rid of feelings of alienation in the unknown world of disabilities. “JOY FOR WHAT IS”: NARRATIVES OF TWO MOTHERS ON RAISING THEIR CHILDREN WITH DISABILITIES A Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree Doctor of Education Approved: ________________________________ Dr. Amy J. Petersen, Committee Chair ________________________________ Dr. Rodney Dieser, Committee Member ________________________________ Dr. Benjamin Forsyth, Committee Member ________________________________ Dr. Christopher Kliewer, Committee Member Zeina H. Yousof University of Northern Iowa December 2016 ii DEDICATION This dissertation is dedicated to my twins Omar and Kynda. Your birth has unveiled an experience I would have not known otherwise. Omar, forgive me. Kynda, you are a shining star in my sky. My love for both of you is immeasurable. iii ACKNOWLEDGEMENTS This dissertation would not have materialized without the immeasurable support and patience from my family and my committee members. First, I would like to extend my most sincere gratitude to my parents Hamzah Yousof and Rafka Haraty for believing in me and supporting me immensely throughout my life. They trusted me enough to send me over 6,000 miles away from home to acquire the degree that I have always dreamed of. I would like to extend a special thank you to my aunt and uncle Haraty’s for instilling in me the love for education and the ambition of earning a doctorate degree. They all have set the foundations towards earing my degree. I would like to thank my brother Mohamad Yousof, for his love and support throughout the past 27 years. I would like to express an immense amount of gratitude to my husband Bilal Kaaki who has showered me with unconditional support, love, and advice. He is the force that pushed me to strive. He and our children Omar Sr., Kynda, and Omar Jr. are the shining stars of my sky. They light it up during my darkest times and decorate it with love and laughter. If it weren’t for their patience and support, this dissertation would not have materialized. I am also deeply indebted to my advisor Dr. Amy Petersen, who stood by me during the toughest times of my life. She empowered me with words of support and advice. She provided me with the strength to gain control of my life again. Her patience mentoring me throughout my journey in my degree and my parental journey mothering Kynda were always filled with acts and words of kindness and empathy. Words cannot express my gratitude for her. iv Additionally I am grateful to my committee members Dr. Dieser, Dr. Forsyth and Dr. Kliewer for their input and advice on bringing together my research study. Your support to accepting a non-traditional method of conducting research made my dissertation possible. Thank you for believing in me. Thank you for your input and advice. When people asked me who my committee members were, they would always reply with “wow, you have a great committee there.” Yes, I do! Thank you! Working with you has been a pleasure! I would also like to acknowledge and deeply thank the family that was willing to open their home and their hearts to me to make this dissertation possible. I am honored to have met them. Conversing and interacting with them has left a life-long impression on me. Sarah, the ripples that Tammy has made in the community have extended to me. v TABLE OF CONTENTS PAGE CHAPTER 1: INTRODUCTION ........................................................................................1 Statement of the Problem ................................................................................................4 Context ...........................................................................................................................6 Statement of Purpose ....................................................................................................10 Research Questions .......................................................................................................11 Theoretical Framework .................................................................................................11 CHAPTER 2: LITERATURE REVIEW ...........................................................................16 Challenges .....................................................................................................................19 Stress, Sorrow, and Loss ........................................................................................19 Coping and Adaptation ..........................................................................................22 Social and Psychosocial Experiences ...........................................................................26 Positivity in Parenting a Child with Disabilities ...........................................................46 Family Needs and Supports ..........................................................................................51 Summary .......................................................................................................................64 CHAPTER 3: METHODOLOGY AND METHODS .......................................................66 Study Design and Rationale ..........................................................................................66 Qualitative Inquiry and Research Methodology ...........................................................67 Autoethnography....................................................................................................69 Case Study .............................................................................................................73 Methods........................................................................................................................73 vi Participants .............................................................................................................74 Data Collection ......................................................................................................76