Florida State University Libraries Electronic Theses, Treatises and Dissertations The Graduate School 2010 Educating Children with down Syndrome in Lebanon: An Exploratory Study of Urban Mothers' Perspective Rima J. Hatoum Follow this and additional works at the FSU Digital Library. For more information, please contact [email protected] THE FLORIDA STATE UNIVERSITY COLLEGE OF EDUCATION EDUCATING CHILDREN WITH DOWN SYNDROME IN LEBANON: AN EXPLORATORY STUDY OF URBAN MOTHERS‘ PERSPECTIVE By RIMA J. HATOUM A Dissertation submitted to the School of Teacher Education in partial fulfillment of the requirements for the degree of Doctor of Philosophy Degree Awarded: Spring Semester, 2010 Copyright © 2010 Rima J. Hatoum All Rights Reserved The members of the committee approve the dissertation of Rima J. Hatoum defended on March 26, 2010. __________________________________ Mary Frances Hanline Professor Directing Dissertation __________________________________ Sande Milton University Representative __________________________________ Gideon R. Jones Committee Member __________________________________ Bruce M. Menchetti Committee Member __________________________________ Susan Miller Smedema Committee Member Approved: _______________________________________________________________ Walt Wager, Assistant Dean and Director of the School of Teacher Education The Graduate School has verified and approved the above-named committee members. ii In loving memory of my parents Joseph S. Hatoum, MBE, and Claire I. Eid-Hatoum, the best parents and role models one could hope for. iii ACKNOWLEDGMENTS I am deeply grateful for the inspiring example, guidance, and support provided by Dr. Mary Frances Hanline during our long association. Along with my other supervisory committee members (listed alphabetically) Dr. Gideon R. Jones, Dr. Bruce M. Menchetti, Dr. Sande Milton, and Dr. Susan M. Smedema, she stood by me and encouraged me to go on, despite difficult circumstances. I would also like to acknowledge Dr. David Westling, Western Carolina University, whose mentorship and encouragement had a significant impact on my career. In addition, I would be remiss not to mention the influence of a few prominent figures in the field with whom I was privileged to work and who enriched my perspective. These include (listed alphabetically) Dr. Leonard Baca, University of Colorado Boulder, Dr. Lou Brown, University of Wisconsin, and Dr. Glen Dunlap, University of South Florida. I am thankful to my two informants and friends, Hana Abu Khadra Salem (Education Committee Coordinator, Lebanese Down Syndrome Association) and Fadia El Daher Farah (President, Lebanese Association for Self-Advocacy), who facilitated participant identification and served as vital sounding boards in implementing the investigation. I am especially thankful to the twelve participants in this study who courageously and candidly recounted their experiences, thus allowing me to develop an authentic understanding of their struggle to educate their children with Down syndrome. I applaud their devotion to their children and their willingness to openly share their lives with me. Last but not least, I would like to acknowledge my two sisters Leila Hatoum-Nakhlé and Mona Hatoum, whose love and unwavering support sustained me throughout what seemed to be a never-ending process. iv TABLE OF CONTENTS List of Tables ............................................................................................. vii Abstract ................................................................................................ viii 1. INTRODUCTION ................................................................................. 1 Statement of the Problem ...................................................................... 1 Research Study‘s Context: Lebanon ..................................................... 4 Research Study‘s Purpose, Questions, and Rationale ........................... 24 Need for and Significance of Study ...................................................... 32 Summary and Transition ....................................................................... 33 2. REVIEW OF THE LITERATURE ....................................................... 34 Introduction ........................................................................................... 34 Impact of Disability on Families........................................................... 36 Views of Disability ............................................................................... 38 Evolution of Parents‘ Role .................................................................... 40 Evolution of Intervention Programs...................................................... 43 Cross-Cultural Perspectives .................................................................. 44 Methodological Limitations .................................................................. 47 Conclusion of Literature Review .......................................................... 47 Summary and Transition ....................................................................... 48 3. RESEARCH METHOD......................................................................... 49 Introduction ........................................................................................... 49 Strategy of Inquiry, Paradigm, and Perspective.................................... 50 Method of Collecting Empirical Materials ........................................... 50 Researcher‘s Role ................................................................................. 51 Researcher‘s Background ..................................................................... 52 Researcher‘s Relationship with Participants ......................................... 54 Ethical Considerations .......................................................................... 55 Procedure for Selecting Informants and Participants ............................ 59 Procedures for Collecting Empirical Materials..................................... 65 v Procedures for Recording Empirical Materials..................................... 75 Procedures for Managing Empirical Materials Records ....................... 78 Procedures for Analyzing Empirical Materials..................................... 78 Procedures Used to Ensure the Trustworthiness of the Study‘s Empirical Materials ................................................................. 80 Summary and Transition ....................................................................... 83 4. EMPIRICAL FINDINGS ...................................................................... 84 Introduction ........................................................................................... 84 Adapting to a New Reality .................................................................... 84 Pursuing Educational Programs and Related Services ......................... 88 Accommodating to Uncertainty ............................................................ 95 Preserving Self ...................................................................................... 96 Key Factors ........................................................................................... 98 Summary and Transition ....................................................................... 101 5. CONCLUSIONS, DISCUSSION, AND RECOMMENDATIONS ...... 102 Conclusions ........................................................................................... 102 Discussion ............................................................................................. 103 Study‘s Contributions and Limitations ................................................. 109 Recommendations ................................................................................. 110 Summary ............................................................................................... 111 APPENDICES ............................................................................................ 114 A Ethical Considerations ................................................................. 114 B Background Information about Child and Family ....................... 124 C Interview Questions ..................................................................... 127 D Validation of Findings ................................................................. 131 REFERENCES .......................................................................................... 132 BIOGRAPHICAL SKETCH ...................................................................... 150 vi LIST OF TABLES Table 1: Participants‘ Demographic Information .................................................. 64 Table 2: Participants‘ Children with DS Demographic Information ..................... 66 Table 3: Procedures Used to Ensure the Trustworthiness of the Study‘s Empirical Findings .................................................................................... 81 Table 4: Participant and Informant Validation Summary ....................................... 82 vii ABSTRACT In view of the fact that Lebanon does not currently have a special education infrastructure, the purpose of this exploratory qualitative study was to understand the phenomenon of educating children with Down syndrome (DS) in Lebanon in terms of the meanings mothers ascribe to it and their description of their experience. The intent was to develop a conceptual ordering of the dynamics of the process that explains their experience and to identify critical factors that surround their quest for educational