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The Experiences of Portuguese-Speaking Families with Special-Needs Children As Related by the Mothers: an Ethnographic Interview Study

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The Experiences of Portuguese-Speaking Families with Special-Needs Children As Related by the Mothers: an Ethnographic Interview Study DOCUMENT RESUME ED 432 158 FL 025 920 AUTHOR Tellier-Robinson, Dora TITLE The Experiences of Portuguese-Speaking Families with Special-Needs Children as Related by the Mothers: An Ethnographic Interview Study. PUB DATE 1997-00-00 NOTE 279p.; Ph.D. Dissertation, New York University. PUB TYPE Dissertations/Theses - Doctoral Dissertations (041) -- Reports Research (143) EDRS PRICE MF01/PC12 Plus Postage. DESCRIPTORS Bilingualism; Elementary Secondary education; Ethnography; Interviews; *Limited English Speaking; Mothers; *Parent Attitudes; *Parent Participation; *Severe Disabilities; *Special Education; Surveys IDENTIFIERS *Portuguese Speaking ABSTRACT A study examined Portuguese-speaking parents' involvement in and feelings about their special-needs children's education. Ethnographic interviews were conducted, in either English or Portuguese, with nine Portuguese-speaking limited-English-proficient and bilingual parents (eight mothers and one father) of severely challenged children. The report describes the study's methodology and results, and presents nine family profiles, as interpreted from the parents' statements. Themes explored include: learning for the first time about the child's disability; meeting the special needs of the child; relationships with siblings; parent attitudes about their experience; language use in the family; concern for the children's futures; family adjustments; dealing with the medical profession; second language learning; and the meaning of the experience of having a child with special needs. A section is devoted to issues in the children's education, including the nature of schooling in the United States, language and cultural barriers, school placement, educational involvement in the home, parent involvement in school, the differing roles of fathers and mothers, and facilitating involvement. Implications for educational practice are discussed. (Contains 125 references.) (MSE) ******************************************************************************** Reproductions supplied by EDRS are the best that can be made from the original document. ******************************************************************************** Sponsoring Committee: Professor Margot Ely, Chairperson Professor Howard Coron Professor Miriam R. Eisenstein Ebsworth THE EXPERIENCES OF PORTUGUESE-SPEAKING FAMILIES WITH SPECIAL-NEEDS CHILDREN AS RELATED BY THE MOTHERS: AN ETHNOGRAPHIC INTERVIEW STUDY Dora Tellier-Robinson Program in Bilingual Education Department of Teaching and Learning U.S. DEPARTMENT Office of Educational OF EDUCATION EDUCATIONAL Research and Improvement RESOURCES INFORMATION PERMISSION TO REPRODUCEAND ti%;:ehis documentCENTER (ERIC) DISSEMINATE THIS MATERIALHAS has been reproduced ceived from the as BEEN GRANTED BY originating it. person or organization 0 Minor changes have been made improve reproduction to 1)0-11,NMA:11.C-In quality Points ot viewor opinions stated document donot necessarily in this RESOURCES official OERI represent TO THE EDUCATIONAL position or policy INFORMATION CENTER (ERIC) 1 Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the School of Education New York University 1997 BESTCOPYAVAILABLE Copyright 1997 Dora Tellier-Robinson ACKNOWLEDGMENTS There are many people who have helped make this study a reality. First and foremost, I would like to thank the members of my committee for their help and encouragement. My chairperson, Professor Margot Ely, inspired me with her passion for qualitative research and helped me see this project through to its conclusion. Professor Miriam Eisenstein Ebsworth contributed her unique perspective both as a parent and as an educator to my understanding of the cross-cultural aspects of the work. Professor Howard Coron, with his insightful comments, helped me understand my data in ways I might otherwise not have. I am also indebted to Professor Dennis Sayers, who awakened my interest in parent involvement and helped me through my proposal and the initial stages of my dissertation. I would like to thank the members of my support group both for their friendship and for the emotional support they gave me. I thank Dr. Margaret Anzul, whose help in editing my dissertation was nothing short of invaluable. In the same vein, I also thank Gerrie Kupper, who went above and beyond the call of duty when she typed this dissertation. There were others who gave me encouragement and support not only during the conduct of this study, but also from the beginning of my studies at New York University. I would like to iii 4 thank Yolanda Cacciolo of The Henry and Lucy Moses Center for Students with Disabilities. The staff of the Bobst Library, especially Tom McNulty, were a great help during this and other research projects. The New Jersey Commission for the Blind and Visually Impaired was a valuable source of support. I also thank my husband Brooks not only for his emotional support, but for his help as my research assistant. I thank the Portuguese community in the New York/New Jersey metropolitan area, whose members opened themselves tome and made me feel part of their community. Most of all, I would like to thank those families who participated in this research. Without their willingness to share their thoughts and feelings withme, this study would not have been possible. iv 5 TABLE OF CONTENTS ACKNOWLEDGMENTS iii LIST OF TABLES CHAPTER INTRODUCTION 1 II REVIEW OF LITERATURE 7 Parent Involvement in Education 7 The Meaning of Parent Involvement 10 Parent Involvement in Bilingual Education 12 Parent Involvement in Special Education 14 Parent Involvement in Bilingual/Special Education 16 The Importance and Benefits of Parent Involvement 18 ParentsAttitudes toward Parent Involvement 20 Attitudes of Special Groups 20 Barriers to Parent Involvement 24 Portuguese-speakers in the New York Metropolitan Area 28 III METHOD 31 Choice of Method 31 Stance of the Researcher 32 Selection of Participants 35 Protection of Participants 38 Data Collection 40 The Interview Process 40 Transcription and Translation 43 Maintenance of Log 44 Data Analysis 45 Ongoing Analysis 45 Final Analysis 46 Trustworthiness 47 continued IV FAMILY PORTRAITS 52 Introducing the Castelo Family 52 Mrs. Castelo's Story 54 Introducing the Paiva Family 62 Mrs. Paiva's Story 64 Introducing the Xavier Family 70 Mr. and Mrs. Xavier's Story 72 Introducing the Duarte Family 78 Mrs. Duarte's Story 82 Introducing the Carvalho Family 87 Mrs. Carvalho's Story 90 Introducing the Dias Family 99 Mrs. Dias's Story 102 Introducing the Gomes Family 109 Mrs. Gomes's Story 112 Introducing the Davila Family 117 Mrs. Davila's Story 120 Introducing the Tavares Family 124 Mrs. Tavares's Story 127 V THE FAMILIES AND THEIR CHILDREN WITH SPECIAL NEEDS: THE BEGINNING TRANSFORMATION 133 Learning for the First Time about Children's Disabilities 134 Children with Special Needs in Their Families 140 Meeting the "Special" Needs of These Children 141 Relationships with Siblings 144 Parents' Attitudes toward Their. Experience 148 Language Use in the Families 152 Language Use of Parents 152 Language Use of Children 153 Concern for the Children's Futures 156 continued vi Thematic Discussion 159 Theme 1. Having a handicapped child required tremendous adjustments for our family. 159 Theme 2. I could not make the doctors listen to me when I tried to tell them that there was something wrong with my baby. 163 Theme 3. My special-needs child requires a lot of extra help and attention. 164 Theme 4. The learning problems of these children have not prevented them from learning a second language. 166 Theme 5. This child has been a gift from God. 169 VI THE FAMILIES AND THE CHILDREN'S EDUCATION 172 Portuguese-speaking Parents in an Urban School District 172 Advantages and Disadvantages of Schooling in the United States 173 Language and Ethnicity as Barriers for Parents 176 Parents Coping with the System 179 Parents' Attitudes toward School Placement 182 Types of Parental Involvement 190 Educational Involvement in the Home 190 Therapy 190 Outings 193 Homework 194 Parental Involvement in School 196 Differences in Involvement for Parents of Special-Needs Children 198 Attitudes toward Involvement 201 The Parents on Their Own Involvement 201 The Parents on the Involvement of Others 203 What the Educators Said 207 Differing Roles of Wives and Husbands 209 What Schools Can Do to Facilitate Involvement 210 continued vii Thematic Discussion 212 Theme 1. Involvement in the education of my child with special needs consumes far more time than involvement in the education of my other children. 212 Theme 2. We have to ask for what we want and fight for our children. Lacking proficiency in English makes it more difficult for us to understand the school system and learn how to procure the services to which our children are entitled. 214 Theme 3. The schools do a lot to support and involve parents of special-needs children, but we have ideas about how they could do even better. 217 VII SUMMARY, IMPLICATIONS FOR PRACTICE, REFLECTIONS ON METHOD, AND SUGGESTIONS FOR FUTURE RESEARCH 221 Summary 221 Implications for Practice 227 Metatheme 1. What these children can do is immensely more important than what they cannot do. 228 Metatheme 2. Parents of such children need to be viewed as very rich resources. 232 Reflections on Method 236 Gaining Entry 236 Interviewing 238 Feelings 241 Suggestions for Future Research 242 BIBLIOGRAPHY 246 APPENDICES 257 A ADVERTISEMENT PLACED IN PORTUGUESE- LANGUAGE NEWSPAPER 257 ENGLISH TRANSLATION OF ADVERTISEMENT
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