Education, Faculty of
DSpace
UBCV
Arian Nejad, Fatemeh
Master of Arts - MA
University of British Columbia
Navigating the healthcare and education system, as well as the services provided at different points along the special education continuum for children with special needs, is complicated and challenging for newcomer parents (Baker et al., 2010; Cummings & Hardin, 2017). Newcomer parentsâ concerns impact their access to and use of services, as well as their experiences (Rhoades et al., 2004). However, research that portrays the lives of these parents, particularly those with special needs children in Canada, remains limited. The scarcity of such data inhibits the cultural integrity of activities in schools, daycare facilities, and the healthcare system. This study examined the experiences of newcomer parents of young children with special needs guided by the following research questions: What are the experiences of newcomer parents of young children with special needs navigating support services in schools and the healthcare system? How are newcomer parents of young children with special needs involved in their childâs education process? What cultural values impact their experiences with the new system? Employing narrative analysis methodology, in-depth interviews of five newcomer parents who have a child with special needs (ages three to eight years) in the Lower Mainland of British Columbia were conducted to investigate their experiences of accessing services, support, information, and resources. These participantsâ interviews were re-storied individually, followed by a cross-narrative data analysis of their narratives. Restories were informed by Ollerenshaw & Creswellâs (2000) problem solution approach, and the cross-narrative analysis yielded six themes. The findings identified a movement from initial puzzlement and shock towards advocacy and navigation processes towards finding resources and services through advocacy, communication, and community support. This study provides valuable information for service providers, policymakers, and professionals in reconsidering policies and procedures that are more culturally competent. It also helps to build relationships more successfully with families who speak a variety of cultures and languages, and gives them the autonomy and power to be involved in their childâs education and treatment procedure.
NAVIGATING EDUCATION SYSTEM AND RELATED SERVICES: EXPERIENCES OF NEWCOMER PARENTS OF CHILDREN WITH SPECIAL NEEDS by FATEMEH ARIAN NEJAD MA, The University of Punjab, 2008 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Early Childhood Education) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) October 2025 © Fatemeh Arian Nejad, 2025 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: Navigating Education System and Related Services: Experiences of Newcomer Parents of Children with Special Needs submitted by Fatemeh Arian Nejad in partial fulfilment of the requirements for the degree of Master of Arts in Early Childhood Education Examining Committee: Laurie Ford, Associate Professor, Department of Human Development, Learning, and Culture, UBC Supervisor Anusha Kassan, Professor, Department of School and Applied Child Psychology, UBC Supervisory Committee Member Suna Eryigit-Madzwamuse, Associate Professor, Department of Human Development, Learning, and Culture , UBC Additional Examiner iii Abstract Navigating the healthcare and education system, as well as the services provided at different points along the special education continuum for children with special needs, is complicated and challenging for newcomer parents (Baker et al., 2010; Cummings & Hardin, 2017). Newcomer parentsâ concerns impact their access to and use of services, as well as their experiences (Rhoades et al., 2004). However, research that portrays the lives of these parents, particularly those with special needs children in Canada, remains limited. The scarcity of such data inhibits the cultural integrity of activities in schools, daycare facilities, and the healthcare system. This study examined the experiences of newcomer parents of young children with special needs guided by the following research questions: What are the experiences of newcomer parents of young children with special needs navigating support services in schools and the healthcare system? How are newcomer parents of young children with special needs involved in their childâs education process? What cultural values impact their experiences with the new system? Employing narrative analysis methodology, in-depth interviews of five newcomer parents who have a child with special needs (ages three to eight years) in the Lower Mainland of British Columbia were conducted to investigate their experiences of accessing services, support, information, and resources. These participantsâ interviews were re-storied individually, followed by a cross-narrative data analysis of their narratives. Restories were informed by Ollerenshaw & Creswellâs (2000) problem solution approach, and the cross-narrative analysis yielded six themes. The findings identified a movement from initial puzzlement and shock towards advocacy and navigation processes towards finding resources and services through advocacy, communication, and community iv support. This study provides valuable information for service providers, policymakers and professionals in reconsidering policies and procedures that are more culturally competent. It also helps to build relationships more successfully with families who speak a variety of cultures and languages, and gives them the autonomy and power to be involved in their childâs education and treatment procedure v Lay Summary Moving to a new country and trying to adjust to the unknown systems in that country is a challenging and overwhelming process. The added pressure of having a child diagnosed with special needs can make it harder for newcomer parents to support their children. This study used narrative inquiry to investigate five newcomer parents of children with special needs (ages three to eight) in the Lower Mainland of British Columbia who have been involved in this process and hear their stories. Their in-depth interviews were restoried individually to portray their journey, which included early moments of puzzlement and shock, followed by trial-and-error, and then growing confidence as they learned how to advocate, ask questions, and find the right people. Six recurring ideas tied the stories together. This information can help systems meet families where they are and help them get where they need to go. vi Preface This research is an original and unpublished work by the author, Fatemeh (Emma) Arian Nejad, under the supervision of Dr. Laurie Ford. I used OpenAI Chat GPT-4 solely for editorial purposes of roughly 15 % of the sentences of the thesis. I did not adapt the suggested sentences verbatim and performed additional edits. This was used in a non-generative manner and merely to check the grammar. The Behavioural Research Ethics Board of British Columbia gave full board approval to this research on November 6, 2024, under the UBC BREB Certificate H23-00817. vii Table of Contents ABSTRACT ................................................................................................................................... iii LAY SUMMARY ............................................................................................................................v PREFACE ...................................................................................................................................... vi TABLE OF CONTENTS .............................................................................................................. vii LIST OF TABLES ........................................................................................................................ xii LIST OF FIGURES ..................................................................................................................... xiii ACKNOWLEDGMENTS ........................................................................................................... xiv Chapter 1: Introduction ................................................................................................................1 1.1 Overview ........................................................................................................................1 1.2 Positionality ...................................................................................................................2 1.3 Definition of Key Terms ................................................................................................4 1.4 Rationale ........................................................................................................................5 1.5 Chapter Summary ..........................................................................................................5 Chapter 2: Review of the Literature ............................................................................................7 2.1 Overview ........................................................................................................................7 2.2 Effective Communication Obstacles ..............................................................................7 2.2.1 Healthcare Practitionersâ Cultural Awareness .................................................7 2.2.2 Language Challenges ....................................................................................12 2.3 Involvement Experiences .............................................................................................16 2.3.1 Perception of Disability and Healthcare System Navigation ........................16 2.3.2 Family Involvement ......................................................................................18 2.4 Self-Determination Theory ..........................................................................................21 viii 2.5 Summary ......................................................................................................................24 Chapter 3: Methods and Methodology ......................................................................................26 3.1 Overview ......................................................................................................................26 3.2 Purpose and Research Questions .................................................................................26 3.3 Methodological Framework .........................................................................................26 3.4 Social Constructivism ..................................................................................................28 3.5 Ethics ............................................................................................................................30 3.6 Procedures ....................................................................................................................31 3.6.1 Recruitment ...................................................................................................31 3.6.2 Measures and Approaches to Data Collection ..............................................32 3.6.2.1 Overview ........................................................................................32 3.6.2.2 Screening Questionnaire ................................................................33 3.6.2.3 Background Information Questionnaire ........................................33 3.6.2.4 Semi-Structured Interviews ...........................................................34 3.6.2.5 Reflexive Journal ...........................................................................34 3.7 Participants ...................................................................................................................34 3.8 Data Analysis ...............................................................................................................36 3.8.1 Restorying .....................................................................................................36 3.8.2 Cross-Narrative Thematic Analysis ..............................................................37 3.9 Rigor ............................................................................................................................39 3.9.1 Credibility .....................................................................................................39 3.9.2 Transferability ...............................................................................................40 3.9.3 Dependability ................................................................................................40 ix 3.9.4 Objectivity .....................................................................................................41 3.10 Summary ....................................................................................................................41 Chapter 4: Presentation of the Research Findings ...................................................................42 4.1 Overview ......................................................................................................................42 4.2 Individual Narratives ...................................................................................................42 4.2.1 Narrative Account of Milla ...........................................................................44 4.2.2 Narrative Account of Pooja ...........................................................................57 4.2.3 Narrative Account of Yun ..............................................................................67 4.2.4 Narrative Account of Mei ..............................................................................81 4.2.5 Narrative Account of Aika .............................................................................88 4.3 Cross-Narrative Thematic Analysis .............................................................................97 4.3.1 Overview .......................................................................................................97 4.3.2 Between the Two Worlds ...............................................................................98 4.3.3 Communication as a Bridge or Barrier .......................................................102 4.3.3.1 Effective/Open Communication ..................................................102 4.3.3.2 Lack of Communication ..............................................................104 4.3.4 Healthcare Navigation ................................................................................106 4.3.4.1 Confusion Among New Users of Services ...................................106 4.3.4.2 System Limitation ........................................................................108 4.3.4.3 Strengths of the Healthcare System ............................................. 110 4.3.5 Parents as Persistent Advocates and Decision Makers ............................... 110 4.3.5.1 Self-Education .............................................................................. 111 4.3.5.2 Forward Thinking ........................................................................ 112 x 4.3.5.3 Taking Initiative ........................................................................... 113 4.3.6 Financial Factors ......................................................................................... 114 4.3.6.1 Funding Limitations ..................................................................... 114 4.3.6.2 Funding as Strength ..................................................................... 116 4.3.7 Parentsâ Emotional Journey ........................................................................ 117 4.4 Summary ....................................................................................................................120 Chapter 5: Discussion ................................................................................................................122 5.1 Overview ................................................................................................................................122 5.2 Discussion of the Findings .....................................................................................................122 5.2.1 Navigation Experiences ..............................................................................122 5.2.2 Involvement ................................................................................................125 5.2.3 Cultural Values ............................................................................................127 5.2.3.1 Cultural Familiarity ......................................................................128 5.2.3.2 Communication ............................................................................129 5.3 Strengths and Limitations ......................................................................................................132 5.4 Direction for Future Research ................................................................................................132 5.5 Conclusion .............................................................................................................................133 References ....................................................................................................................................135 Appendix A: Screening Questionnaire .........................................................................................145 Appendix B: Background Information Questionnaire .................................................................146 Appendix C: Interview Questions ................................................................................................149 Appendix D: Consent Form .........................................................................................................151 Appendix E: List of Initial Codes (Open Codes) .........................................................................154 xi Appendix F: Research Flyer ....................................................................................................156 xii List of Tables Table 1 Participant and child characteristics .................................................................................35 Table 2 Plot structure: newcomer parents navigating Canadian education and healthcare (Milla) ........................................................................................................................................................55 Table 3 Millaâs restorying process using ProblemâSolution narrative structure approach (Ollerenshaw & Creswell, 2002) ..................................................................................................56 Table 4 Plot structure: newcomer parents navigating Canadian education and healthcare (Pooja)........................................................................................................................................................65 Table 5 Poojaâs restorying process using ProblemâSolution narrative structure approach (Ollerenshaw & Creswell, 2002). .................................................................................................66 Table 6 Plot structure: newcomer parents navigating Canadian education and healthcare (Yun) ............................................................................................................................79 Table 7 Yunâs restorying process using the ProblemâSolution narrative structure approach (Ollerenshaw & Creswell, 2002) ..................................................................................................80 Table 8 Plot structure: newcomer parents navigating Canadian education and healthcare (Mei) .............................................................................................................................................86 Table 9 Meiâs restorying process using the ProblemâSolution narrative structure approach (Ollerenshaw & Creswell, 2002) ..................................................................................................87 Table 10 Plot: newcomer parents navigating education and healthcare in Canada (Aika, Fifth participant) .....................................................................................................................................95 Table 11 Aikaâs restorying process using the ProblemâSolution narrative structure approach (Ollerenshaw & Creswell, 2002) ..................................................................................................96 Table 12 Themes and subthemes. .................................................................................................98 xiii List of Figures Figure 1 Data analysis stages .........................................................................................................39 xiv Acknowledgments Thanks to my participants who trusted me with a precious part of your lives, your stories, hopes, and everyday courage shaped every page of this work. Thank you for your openness and trust. My deepest gratitude to Dr. Laurie Ford, my supervisor and professional mentor. Your wise advice, steady guidance, and generous heart lit the path forward; I am a better researcher and person because of you. I am also grateful to my committee members, Dr. Suna Eryigit-Madzwamuse and Dr. Anusha Kassan, whose constructive, thoughtful feedback challenged me, strengthened this study, and kept me moving with renewed confidence. The classes I took with Dr. Sandra Mathison profoundly shaped my vision as a researcher and left a lasting imprint on how I think, question, and care. To my husband and child, whose patience, love, and everyday support carried me through the long stretches and late nights, this achievement belongs to you as much as it does to me. To my parents, sister, and brother, thank you for standing with me through every rise and fall, believing in me when I struggled, and celebrating every small step forward. I am also thankful to Abby and Shirina Aktar for their time and thoughtful advice, and to Dr. Jackline Maloney for her steady support, stimulating conversations, and friendship throughout this journey. Each of you helped me hold onto purpose and hope. Thank you, I couldnât have done it without you. 1 Chapter 1: Introduction 1.1 Overview For parents of children diagnosed with special needs, it can be very challenging to navigate the education and healthcare systems to access services. Newcomer families' concerns impact their access to and use of services, as well as their experiences (Rhoades et al., 2004). The healthcare system may be particularly challenging for newcomer families to comprehend and use, and they might also encounter cultural difficulties or disagreements with mainstream healthcare professionals (Baker et al., 2010). A recurring theme apparent across nearly all the studies reviewed as part of the scoping review for this thesis (Arian & Ford, 2025) was the presence of cultural obstacles and their influence on healthcare professionals' comprehension of the requirements of immigrant families and their childrenâs needs. Lehman (2022) highlights the importance of prioritizing newcomer families with special needs, as they encounter numerous challenges when settling in a new country. It's essential to offer services that are both culturally appropriate and responsive to create safer environments, uphold basic human rights, and resist the various forms of oppression these families experience. Providing care that aligns with familiesâ cultural contexts can greatly help in minimizing both perceived and actual discrimination. Groce (2005) defines cultural competence as the capability to assist healthcare providers in understanding the needs and concerns of people with special needs and their families from minority communities and responding to them. Therefore, the service providers need to be aware of newcomer parentsâ familiarity with their childâs healthcare access, quality, utilization, and cultural educational experiences to facilitate their interaction and provide culturally competent 2 services. According to Puig (2012), to nurture and assist families and children, it is important to identify and use the family's languages, cultures, values, and strengths. There is a lack of research that portrays the lives of newcomer parents with children diagnosed with special needs in Canada. In its 2021 to 2041 (projected) infographic, Statistics Canada (2022) shows immigrants are expected to make up between 29.1% and 34.0% of Canadaâs population, which makes this matter even more pressing. The scarcity of such data inhibits the cultural integrity of activities in schools, daycare facilities, and other child-serving environments. Addressing this gap, the present study focused on parentsâ experiences navigating education and healthcare systems, their sense of involvement and the impact of their perceptions and cultural values on their understanding of their child's special needs diagnosis, and how that, in turn, impacts their well-being through exploring their experiences with the service providers and seeking help. 1.2 Positionality When I think about where I am from, multiple countries come to my mind. I was born in Iran, yet I have lived in different countries, each one for around three to five years. Since I can remember, I have always been a newcomer striving to adapt to new cultures and ways of thinking and knowing, while preserving mine, which helped me have an open mind to diversity and acceptance and shaped me into who I am today. Being a part of diverse educational systems and having the privilege of being instructed by teachers from different nationalities and languages, who imparted a part of their culture and language to me, exposed me to a kind of variety and new perspective in my way of teaching, research, and personal life that I am grateful for today. 3 Apart from all the privileges this kind of lifestyle had, it was also very challenging. The most challenging phase of being a newcomer I am currently experiencing is moving to a new country with a young child, trying to navigate the education and healthcare system and doing my best for my child. Even though my child is not diagnosed with special needs, and I come from the privilege of being educated in the field of early childhood education in Canada, it has been very challenging to connect and understand the new system and make sure I am making the right decisions for her and have enough connection with the teachers and school personnel. I have been an educator for the last sixteen years, and my vision as an educator is, as Susan MacDonald (2016) puts it, to create a supportive environment for everyone to thrive by focusing on their strengths. From what I have witnessed in years of being an educator, the involvement of families who have children with special needs is always a challenge and concern. Upon moving to Canada, I started working at a daycare with the Developmental Disabilities Association, which is an inclusive childcare program to support children and their families to develop understanding, acceptance, and respect for diversity. That is when I first got trained and started working with special needs children. After working at Developmental Disabilities Association (DDA) for two years, talking with families with special needs children and observing that most of them are newcomers to Canada, I started to notice the challenges they have in connecting with the system for various reasons and how this leads to delays in finding the right help for their children. Being a newcomer myself and witnessing these families' unheard voices led to my research question in the hope of making this process easier for families. I understand how sensitive this topic is and how these families are under a lot of pressure and stress, considering all that. I have been able to build an atmosphere of trust and acceptance with the families I work 4 with and even outside my workplace with families from my community who are going through this process. I will strive to be as honest in my intentions and research this sensitive issue while also being aware of the strengths that newcomer families offer the Canadian context. My epistemological position is that through understanding the reality of my participants, I aspire to find ways to make newcomer families with special needs children transition into the new education and care system easier. To capture a range of perspectives and âreport experiences, meanings and the reality of participantsâ (Braun & Clarke, 2006, p. 81). I tend to believe that I belong to a world where we are all dwelling together and our actions and decisions influence the entire humanity; therefore, we need to be mindful of our commitment to our world. 1.3 Definition of Key Terms Newcomer. The term newcomer includes permanent residents (including people who have received "approval-in-principle" from Immigration, Refugees and Citizenship Canada to stay in Canada), refugees (protected persons), and temporary residents, including students, workers, or temporary resident permit holders. Newcomer refers to people who have lived in Canada for less than five years (Statistics Canada, 2019). The reason newcomer parents are chosen for this study is that it also includes families who have been living in Canada for years under other legal statuses, giving them a chance to be included and their voices heard, which provides a broader scope for the study. Early Childhood. This era is defined as the period of a child's development from birth to eight years; however, the current study refers to early childhood (young children) as children from three to eight years old. Special Educational Needs. According to Special Education Services: A Manual of Policies, Procedures and Guidelines of BC, Special educational needs refer to unique 5 characteristics that require tailoring educational resources beyond what's typical for most students. These needs emerge during student assessments and serve as the foundation for designing personalized educational programs and ensuring access to necessary resources Parent. The term parent in this study refers to natural parents (mother or father), or a guardian who has the legal custody of the child. 1.4 Study Rationale This study is prompted by the need for newcomer parents with special needs children to have a platform for sharing their experiences and needs with others going through the same process of navigating the school system and service providers. There is a gap in current literature in looking deeply into newcomersâ experiences with navigating the new educational and healthcare system while they are attempting to address their childrenâs needs. Having a clearer understanding of the parents' perceptions of these experiences, challenges, and beliefs can assist service providers, policymakers and professionals in reconsidering policies and procedures that are more culturally competent. It also helps to build relationships more successfully with families who speak a variety of cultures and languages and gives them the autonomy and power to be involved in their childâs education and treatment procedure. By doing this, the research aims to contribute to both scholarly knowledge and to creating a more inclusive, culturally and linguistically competent environment for newcomer families within the Canadian context. 1.5 Chapter Summary In this chapter, a brief overview of the study background was presented, which is followed by the primary investigatorâs positionality, acknowledging her background, experiences, and position as a newcomer parent to Canada. Definitions of key terms that guided the study are given to ensure readers have a shared understanding of the terms and for clarity in 6 terms of research focus. This chapter is finalized with the rationale of the study as to why itâs important to investigate the experiences of newcomer parents with special needs children, and the significance of the study. 7 Chapter 2: Review of the Literature 2.1 Overview In this chapter, the experiences of immigrant parents while seeking assistance for their child with special needs are investigated. This review of the literature is focused on the studies conducted in the United States and Canada to result in a more focused understanding of the systems in this region, since the current study is conducted in the Lower Mainland of British Columbia. Looking into other regions would introduce different policy frameworks and systems, while the policy and system similarities in the context of education and healthcare in Canada and the United States allowed for a more meaningful cross-reference and the identification of patterns that are consistent with the context of the study. Two main topics emerged in the literature and serve as an organizer to this review of the literature: Effective Communication Obstacles and Involvement Experiences. These themes are broken down into subthemes. In addition, Self Determination theory is explored as a lens to examine how the three basic psychological needs might impact parental involvement in navigating support services. 2.2 Effective Communication Obstacles 2.2.1 Healthcare Practitionersâ Cultural Awareness The concept of culturally responsive treatment is a complex issue. It entails improving the expertise and training of service providers as well as tackling ingrained prejudices and power disparities in the Canadian healthcare system. Policymakers must consider their own cultural and personal privileges as well as Canada's colonial past and its systemic effects on organizations to be culturally sensitive (Naidu et al., 2022). A recurring theme apparent across nearly all the studies was the presence of cultural obstacles and their influence on healthcare professionals' comprehension of the requirements of immigrant families and their childrenâs needs. These 8 barriers similarly hindered the families' comprehension of their child's diagnosis and the subsequent treatment process. A qualitative study conducted by Son et al. (2018) with 22 parents of children with special needs demonstrated that some parents reported disappointment and skepticism over the lack of medical certainty or a "cure" for their child, while others indicated concern that their primary care practitioner is not equipped with a specialized understanding regarding their child's condition. Several parents reported extensive cultural differences between the United States and their native country regarding the availability of services, suggestions of special needs health care professionals, and understanding of the childâs special needs. On the other hand, some parents reported having great interactions with their medical professionals due to their cultural competency, which facilitated their ties with both the medical system and the diagnosis and needs of their children. The narrative review Khanlou et al. (2015) conducted on the experiences of immigrant fathers with special needs children in Canada found that what escalates the caregiving burden experienced by these parents is the difficulty of adjusting to a different culture, integrated with the responsibility for caring for children with a developmental disability. In a qualitative study conducted in Canada, 21 immigrant mothers of children with autism spectrum disorder (ASD), representing diverse ethnocultural backgrounds, were interviewed in Toronto to explore the barriers they face in accessing social support and services for their children. Participants perceived the support provided as unreliable and untimely, largely due to the lack of culturally competent and linguistically appropriate services (Khanlou et al., 2017). In addition to that, stigma and limited access to health information may cause delays in seeking and obtaining timely care, which might have negative effects in the process of seeking help (Durbin et al., 2021). 9 A lot of Korean families acknowledge that they very much value traditional beliefs, which indicate respect for authorities and following them without questioning (Kim, 1996). It's against the values they were raised to believe in, to challenge or express a different opinion (Jegatheesan, 2009; Park &Turnbull, 2001; Sohn & Wang, 2006). Sohn and Wangâs (2006) qualitative study of six immigrant Korean mothers with preschool to fourth-grade special needs children, which investigated their perspective on involvement in American schools, revealed that mothers found it difficult to see themselves as partners with the teachers. Additionally, parents' visits to their children's schools are not as promoted in Korea as they are in America unless their children have misbehaved or incurred a loss of credit. Mothers in Korea don't frequently visit their childrenâs schools. Similarly, in John and Benderâs (2018) qualitative study of five first-generation immigrant Indian mothers having a child with developmental disability between 22 months and two years old in the United States, the participants' descriptions of the distinction between their upbringing and the setting where they were receiving assistance for their children are proven to affect both doctors and instructors. The parents' clear acknowledgment of the influence of their cultural heritage on their experience of a stressor was what set this subject apart and made it special. The American medical community's preference for individual decision-making contrasts notably with the authoritarian style to which these mothers are used. Park et al. (2001) conducted a qualitative inquiry in the US, investigating the viewpoints of ten Korean American parents with children with disabilities regarding their collaboration with service providers to address the needs of their children and families. They illustrated that strong communication between parents and professionals could be hindered by factors such as language barriers and cultural differences in conversational style. In their study, even the two parents who had been actively involved in the collaborations with experts pointed out that they would hesitate 10 before offering any ideas or criticisms. Instead of speaking with specialists directly, they said they would write them a letter. They implied that they were attempting to sound pleasant and kind when expressing their point of view, whether in writing or direct conversation. One mother shared her experience of having specialists visit her home as she was raising her children. She was taught not to show parental affection to children in front of others; therefore, she avoided interacting with her child while guests were present, which was misinterpreted as being unresponsive and disinterested, which led to them considering the motherâs lack of engagement with her child as âproblematicâ. Mothers believed that to create a respectful and trustworthy connection, professionals must be aware of these cultural differences (Jegatheesan, 2009). Because they feared that private matters of their family may be revealed to the rest of their community and disgrace the family, Asian American mothers in Jagatheesanâs (2009) qualitative study on 23 first-generation Asian American mothers of children with developmental disability between 2 and 10 years old, were not comfortable discussing their family history, especially in the company of an interpreter. They were reluctant to disclose crucial family information that might have helped the professionals. Many families showed signs of having deeply ingrained cultural views about having a child with a disability, many of which were unfavourable. This was to the extent that, for fear of being exposed or being unable to accept the situation of their child, some other mothers chose not to go back to the specialists' offices. One mother, who has a son with autism, indicated that she initially denied all treatments because doing so would have meant accepting her sonâs condition. This study concluded that the 16 mothers in the study followed the specialists' advice despite having some reservations or not being entirely on board with their decisions. This forced silence 11 had significant cultural roots, which included a respect for professionals' knowledge, a belief in their abilities, a fear of disrespecting professionals, and humiliation over ignorance. In the qualitative inquiry conducted in Canada by Woodgate et al. (2017) on the experiences of eighty-three African immigrant families with special needs children to examine their access to primary healthcare, results indicated that engaging in healthcare was challenging for the participants due to linguistic and cultural barriers. The families often struggled to express and comprehend a Westernized understanding of health, healthcare systems, and treatment philosophies. Consequently, they expressed frustration because they believed that care providers didn't understand them. Some components of treatment were also deemed to be culturally unsuitable by the immigrants and refugee families in the study. When working with immigrant families, gender dynamics must be considered. In Kingâs (2011) qualitative survey of four parents and thirteen service providers to investigate the challenges of providing services for immigrant families and how culturally competent they are, according to one mother, men in the Muslim community in Canada make decisions, and spouses are expected to seek out facts and ask questions. Service providers agree that more time should be spent getting to know immigrant families' settings and histories, as well as their experiences and perspectives on healthcare. Brown et al.âs (2020) scoping review suggests that service or care providers must have a sensitive understanding and appreciation of cultural variety to provide early childhood developmentally appropriate, inclusive, and meaningful care. Offering screening, services, programmes, and practices that are culturally appropriate was how cultural responsiveness was typically defined. Providing training on culturally safe practices and responsive care to service providers and staff is essential for fostering more inclusive and equitable communities. Increasing awareness and applying an equity-based framework in policy 12 and practice implementation can strengthen trust and relationships with populations with diverse needs (Dada et al., 2024). 2.2.2 Language Challenges According to studies conducted in the US and Canada exploring experiences of immigrant parents with special needs children, in addition to cultural differences hindering parents' and care providersâ communication and understanding, language barriers are another prominent challenge that immigrant parents must constantly address. For parents of children with special needs, one of the major barriers to receiving and using healthcare services is the language barrier (Lindsay et al., 2012). Following Lai and Vadeboncoeurâs (2013) qualitative study on 10 immigrant Chinese Canadian mothers with elementary and secondary age special needs children to examine their involvement, only two of the ten participants were entirely at ease speaking English; however, only three families received interpretation services during official school meetings. Interpretation services were not easily available, and parents had to make prior arrangements for them. The necessity of relying on family and friends for interpretation support also had its complications. King et al. (2011) revealed that parents admitted to agreeing to treatment decisions for their children that they did not feel comfortable with because they were unable to express their concerns or inquire about other treatment options. Some parents went to the extent that they refused the services available because they did not know what was being offered. Two of the participants admitted to having language barriers at the time their child was given the diagnosis. When they met with doctors and other medical professionals, they were unaware that they could use an interpreter. Both interviewees felt that if they had utilized an interpreter when speaking with doctors, they could have made better decisions about their childâs treatment plans. Similarly, 13 9% of the families in Hughes et al.âs (2002) qualitative study on forty-four Latino families in the US to explore their understanding and involvement in school, expressed exasperation due to their lack of ability to communicate in English. They stated that although the school provided interpreters, they were not always available, and they had to hire their own interpreter or bring in a friend or another student. Some of the participantsâ understanding of their childâs diagnosis in the Son et al. (2018) study was influenced by misinterpretation, which led to missing some possibilities. Additionally, certain issues of accurate communication were noticed when specialists spoke via a third party. Therefore, it is important to consider how a doctor's interaction with a third party affects the way parents see their engagement in their children's care. Families' interactions with the healthcare system were impacted by language difficulties and the necessity for interpreters to the extent that they even felt unmerited or lost because of these issues with the interpreters. The same challenge came up in Khanlou et al.âs (2015) narrative review that examines research on the experiences of immigrant fathers who have children with disability in Canada, where it was stated that many of them do not speak English as a first language, and the complexity of medical terminology itself made it difficult for fathers and medical personnel to communicate effectively. Itâs important to point out that, regardless of the employment of interpreters, families with poor English ability may still experience discomfort and frustration when attempting to learn about their child's diagnosis. One of the participants in the qualitative study by Lai and Ishiyama (2004) that investigated the involvement of 10 immigrant Chinese Canadian mothers who lived in Canada for less than five years in the education of their children with special needs, indicated that he could understand only one-third of what was communicated to him during meetings with his childâs teacher in the absence of an interpreter which demonstrates how difficult it is for parents 14 to interact with service providers. This is another example illustrating how parents' involvement in their children's education has been negatively impacted by their limited English language ability. Regarding using and understanding medical jargon participants in Park and Turnbullâs (2001) qualitative inquiry of eight Korean parents of children with special needs ages between four to fourteen to record parentsâ perceptions, level of satisfaction, and concerns regarding special education services in the US, parents expressed that since some terms have been used by professionals frequently, they start using them as well without having a thorough understanding of what they refer to. According to the survey, the parents did not think that direct translation was sufficient. They required assistance that goes beyond mere language interpretation. The assistance of two interpreters was highly valued by the parents in this study. Respondents reported that they were more at ease receiving assistance from someone who had experienced the same process in the US as a parent of a child with a special need who spoke a foreign language. In reference to the results of the qualitative study conducted in Canada by Woodgate et al. (2017), language and cultural barriers made it challenging for study participants to access medical care. Families of African immigrants and refugees often struggled to express and comprehend a Westernized definition of health, healthcare systems, and treatment philosophies. Participants became frustrated because they believed that care providers didn't understand them. At times, it was challenging to fully communicate symptoms and understand the medical professional's conclusions. In some cases, health issues do not have a clear English translation; therefore, inaccurate information could occasionally be given. These parents sometimes questioned the diagnosis and plans for treatment due to incorrect interpretations, which strained their relationship with the healthcare providers, and consequently, some of them refrained from 15 following the plans. To facilitate communication between immigrant and refugee families and their healthcare providers, the healthcare system relies on interpreters, which doesnât always seem like an efficient alternative. Drawing on Sohn and Wang (2006), regardless of how long participants had lived in the US, communication with teachers and taking part in school activities were both hampered by language barriers. Nevertheless, many acknowledged that speaking English with teachers was a challenge. One participant described the frustration that everyone experienced by admitting that she is eager to stay in touch with her childâs teacher, but the teacher does not understand the way she speaks English, which leads to her frustration. Most of the mothers in the study did not receive any interpretation services or other linguistic assistance from the schools; hence, the participants' weak command of English led to numerous complications. They displayed unwilling attitudes and hesitation for their children to participate in school. All of the studies reviewed indicated barriers that difficulty with communication causes, nevertheless, Rossetti et al. (2020) qualitative study conducted in the US with 38 immigrant families with special needs children from pre-kindergarten to 6th grade examining their participation and language access in their childrenâs IEP ( Individualized Education Programs ) meetings, as well as their perspectives on what would improve their IEP meetings through focused groups, note that for access to IEP materials and meetings, the parents indicated that language accommodations are needed. These include providing live interpretation during IEP meetings, translating IEP materials into their chosen language, and having school staff members acknowledge the difficulty of having to attend IEP meetings with limited English language competence. However, the lack of these elements restricted their access to essential information and ways of participation, which deprived them of participating meaningfully in IEP meetings. 16 More than half of the parents in the study reported attending IEP sessions without language interpreters or without interpreters who were able to facilitate their participation. Similarly Lee and Parkâs (2016) study on seven immigrant Korean mothers who lived in the US between two to fifteen years and their special needs children aged between three and half and thirteen focused on exploring how cultural contexts influence the attitudes of mothers raising children with disabilities reported none of the mothers admitted to being fluent English speakers, and they talked about how difficult it was for them to communicate in English. Language problems between families and professionals were noted by several of the families. Puig (2012) suggests âLanguage is tied to identity, relationships, social access, and self-esteemâ (p.335). He goes on to recommend the need for platforms and organizations that enable professionals and family members to exchange rich, detailed information regarding language resources and priorities in families. 2.3 Involvement Experiences 2.3.1 Perception of Disability and Healthcare System Navigation Parents' perception of disability varies and is impacted by the culture, society, history, and many other factors of the context in which they grew up. Daudji et al. (2011), in a qualitative research study conducted in Canada on the perceptions of five mothers from Pakistan and India, clarify this notion. The participants in this study had religious reasons for their childâs special needs and believed that God's will was at work in their child's condition and expressed gratitude to God. These mothers' view of special needs was influenced by both conventional and modern ideas. Upon learning the diagnosis of their child initially, mothers resisted accepting the news. They talked about clinging to the hope that their child's condition might improve gradually. The same perceptions on the part of parents came up in a qualitative study by King et al. (2011), 17 where one mother shared that she believes her sonâs special needs are a part of Godâs plan for him, while another family shared a belief that their child will be normal even without access to Western medicine. From the standpoint of the service providers, there isn't always a distinction between being ill or having special needs among certain newcomers. A community service employee in the study also shared that many immigrants view special needs as a temporary sickness that can heal on its own over time. Ultimately, these insights on the part of parents prevent them from being willing to navigate the healthcare options they can provide their children. In addition to financial challenges, affordable housing and food, lack of support network, long waitlists and complicated paperwork led to difficulty navigating the healthcare system for mothers in Khanlou et al. (2017)âs study, which led to losing access to vital funding opportunities and important services such as therapies, respite care, and social support programs. In some cases, parents are not aware of their childâs special needs and consider them as part of their development. Cummings and Hardin (2017), in their phenomenological study on eight immigrant parents in the US with special needs children aged four to seventeen years, present perspectives on disability and parentsâ experiences with special education services. They portrayed the reason for these understandings, stating most parents in this survey reported that they had never encountered special needs persons before having a child with one and that they had previously assumed their children's behaviour was normal until receiving a diagnosis. The attributes of schools or similar environments offering various kinds of services differed based on both the age groups of the children and the types of disabilities they had. Navigating the care system in a new country is very challenging, considering parents' different backgrounds and not knowing how the medical system operates in the new country. 18 This may lead to complications such as being assigned the wrong program. Hughes et al. (2002) reported that 25% of the families that participated in their study indicated that it took a long time to get their child into the right programme and that they hadn't seen any improvement in the previous 12 months. Moreover, roughly 27% of the families in the study said they believed that the educational program they were assigned did not meet their childâs needs. According to the outcomes of Son et al.âs (2018) study, aspects of the immigrant experience, such as feelings of isolation and increased reliance on more culturally assimilated family members, contributed to the difficulties some parents experienced while navigating a complex system. These issues were also exacerbated by their lack of knowledge of a system that drastically differed from the system in their home country. Community-based solutions were regularly used to address these specific navigational problems. These connections throughout the community provided parents with crucial emotional support and understanding while also assisting them in learning how to navigate the system. 2.3.2 Family Involvement Lai and Vadeboncoeur (2013) describe parent involvement in the field of education as parental support in a child's education that takes place at and connects two crucial contexts in a child's life, home and school. The relationship that the six parents in this study experienced with the teachers was unidirectional; they perceived their roles as seeing and hearing, or more simply, as receiving information. The participants perceived a subtle imbalance of partnership. Itâs important to point out that the prospect of a partnership is lost in the absence of a well-established, courteous, and trustworthy relationship between school staff and parents. Most parents in the Cumming and Hardinâs (2017) study characterized themselves as actively engaged in promoting their child's development within the home environment, while noticing a 19 comparatively less active role in educational or medical contexts. Itâs worth highlighting that all parents in this study displayed dedicated endeavours in seeking out services for their children, and a significant number consistently attended multiple meetings and appointments to promote their children's advancement. Similarly, parents in the Rossetti et al. (2020) study expressed a wish to participate actively in their children's education in addition to the creation and execution of IEPs. Parents frequently saw striving towards better teamwork as a difficult but vital endeavour. Most parents made special efforts to participate more meaningfully after they understood the value of IEP sessions and the expectation of parental involvement. Active involvement was defined as parents participating in the IEP meeting by contributing ideas, conveying concerns, and posing inquiries regarding specific services for their children. For most parents, active participation also meant putting greater thought into IEP meeting preparation. Lai and Ishiyama (2004) conducted a qualitative study in Canada with 10 Chinese immigrant mothers to examine their involvement in their special needs childâs education. The results revealed that education and learning were valuable to these mothers. They all openly showed their love for their children and a willingness to support them academically. In addition to language barriers, the parents' view of the teachers as being superior prevented them from communicating with the school and participating in activities. Four of the parents said that they respect teachers as authoritative personalities or subject-matter experts, which prevented them from voicing their opinions. These mothers indicated respect for teachers as authority figures, but they also preferred an unofficial parent-teacher or teacher-student relationship. According to Harry's (2008) review of literature on parent involvement in special education with families with culturally diverse backgrounds, some service providers have negative perceptions and are biased against these families. While the parentsâ customary respect 20 for authority and professional knowledge shapes how they see themselves contributing to their children's education. As Lee and Park (2016) proposed, the way that these mothers perceived difficulties in fulfilling their children's requirements was influenced by their lack of knowledge of the US educational system and the procedures in special education programmes that appeared to be challenging. Most participants reported a lack of support from their partner or spouse, which made the process even more challenging, especially after already losing their support networks due to immigration and adjusting to a new environment (Khanlou et al., 2017). According to Hughes et al. (2002), families acknowledged that they were actively involved in their children's education by talking to them, asking them questions, and being informed about every aspect of their children's education. Participation means involvement in every element of their child's life, including their schooling, development, and socialization, for most families in this survey. The results indicated that families most frequently mentioned attending school meetings (73%), having parent-teacher conferences (70%), and dropping by their child's classroom (64%) when describing their involvement in the school. Similarly, participants in Sohn and Wangâs (2006) study believed that their involvement in their children's education raised their own self-esteem, helped them feel at ease in school, helped them adjust to the American educational system, and even helped their children succeed in school. In a quantitative study conducted in the United States on 87,762 children, including children with and without special health care needs (CSHCNs), researchers aimed to assess how immigrant family type influences access to a medical home and to identify which components of the medical home are most affected. This study emphasizes the importance of customized interventions, particularly those that enhance family-centred communication and coordinated 21 care, in addressing health disparities. Such measures are vital to achieving just health outcomes for children from immigrant families, especially those with complex medical conditions (Kan et al., 2016) According to Park et al. (2001), parents with limited proficiency in English had less interaction with teachers and medical professionals. For this reason, three participants in this study indicated a lack of fundamental comprehension of special education or other available support services. Four other participants exhibited slightly higher levels of knowledge compared to the other three parents, yet their understanding remained limited. It was evident that these parents had limited background knowledge necessary to comprehend the dynamics of collaborating with professionals in the new context. None of these parents could assess the quality of their engagement, as their lack of basic information about service delivery and their parental rights prevented them from doing so. 2.4 Self-Determination Theory Deci and Ryanâs Self Determination Theory (SDT) was adopted as a lens to examine how the three basic psychological needs might impact parental involvement in navigating support services. Rooted in decades of empirical studies, SDT implies that there are three psychological needs for optimal development and functioning, namely the demands for autonomy, relatedness, and competence (Deci and Ryan, 2000). Within SDT, there is a mini theory concentrated on defining the fundamental psychological requirements for relatedness, competence, and autonomy, as well as how these requirements serve as vital components of healthy growth and well-being. The foundation of Basic Psychological Needs Theory (BPNT) was the idea of universal psychological needs. It was initially developed to attribute the well-being effects associated with satisfaction of the three core 22 psychological needs (Lange et al., 2011). According to Ryan and Deci (2017; 2016), based on this perspective, well-being is better defined as thriving or fully functioning than as just having happy or unpleasant emotions. Individuals who are fully functional experience an unrestricted interaction between their senses and their inner states, allowing them to perceive their surroundings and themselves without any defensiveness, which is especially important in newcomer families because it makes it easier for them to explore and be involved in their special needs childâs growth process in a new country. This research aimed to explore how fulfilment or dissatisfaction of autonomy needs impacts newcomer parents' experience, how they perceived their autonomy in making decisions related to their childâs support services and to what extent they felt that their input and preferences are considered in the decision-making processes. Many parents claim they experience stress during IEP meetings, don't feel like equal partners and respected members of the team, and think they must battle the school to get the services they want for their kids (Blackwell & Rossetti, 2014). Involving families in shared decision-making requires healthcare professionals (HCPs) to comprehend and value their clients' values, beliefs, and goals (Panzarella, 2009). Lai and Vadeboncoeur (2013) describe parent involvement in the field of education as parental support in a child's education that takes place at and connects two crucial contexts in a child's life, home and school. The relationship that the six parents in this study experienced with the teachers was unidirectional; they perceived their roles as seeing and hearing, or more simply as receiving information. The participants subtly noticed an imbalance in the partnership. Itâs important to point out that the prospect of a partnership is lost in the absence of a well-established, courteous, and trustworthy relationship between school staff and parents. While the other two needs are still significant, in certain contexts one of the three 23 requirements will "take the lead" in terms of its correlation with wellness results. Supporting autonomy as a contextual component, however, is crucial in most circumstances because it enables people to actively meet all their needs and gravitate toward and use optimal methods to fulfill each fundamental need (Ryan & Deci, 2016;2017). The study conducted in Canada by Woodgate et al. (2017) on the experiences of African immigrant families with special needs children indicated that engaging in healthcare was challenging for the participants due to linguistic and cultural barriers. These families often struggled to express and comprehend a Westernized understanding of health, healthcare systems, and treatment philosophies. Consequently, they became frustrated because they believed that care providers didn't understand them. Some components of treatment were also deemed to be culturally unsuitable by immigrants and refugees. This study investigated the role of relatedness in newcomer parents' experiences, specifically examining their connections with school staff and teachers. The way they perceived their relationships with teachers and school staff in the context of their child's special needs. Drawing on Sohn and Wang (2006), regardless of how long participants had lived in America, communication with teachers and taking part in school activities were both hampered by language barriers. Many acknowledged that speaking English with teachers was a challenge. Lastly, this study explored how cultural values intersect with the satisfaction of basic psychological needs for newcomer parents, and whether certain cultural factors enhance or challenge the fulfillment of autonomy, competence, and relatedness. SDT research revealed that autonomy-supportive social situations, choice, positive feedback, and acknowledging feelings are external factors that assist internalization, intrinsic drive, and psychological well-being (Lange et al., 2011). Individual differences may have an 24 impact on need satisfaction because people may differ in how personally prominent these requirements are or how centrally the needs are represented in their objectives and lives. However, the fundamental tenet of the SDT approach is that, even in the presence of these conditional factors, higher levels of basic need fulfillment will lead to increased wellness and vice versa (Ryan & Deci, 2016; 2017). 2.5 Summary The literature review, explored in this chapter, investigates the research conducted in Canada and the US on how immigrant families with special needs children settle in the new medical and educational systems and what impacts their understanding of their childâs special needs. The studies revealed that not all parents face difficulties in navigating the system, and some are supported by their community, teachers, service providers, and even interpreters who are present during school and medical meetings. Nevertheless, most parents in the studies reviewed reported encountering significant barriers and challenges that led to them not following up on their childâs needs, medication, IEPs, or school meetings, which, over time, may cause more difficulties for these parents and their children. The review of the literature illustrated that there is very limited research conducted in Canada with a focus on newcomer parents of special needs children navigating the education and healthcare system. Especially the intersection between the two systems, which is explored in the current study. There is a gap in the literature on looking into the success stories, strategies, and effective resolutions suggested or practiced by parents, as well as the strengths they offer to their new context, which is highlighted in the narratives of the participants of the current study. Self-determination theory is investigated as part of the literature review to inform the impact of fulfillment of the three core competencies on parentsâ sense of inclusion and well-being. According to the findings of this review, various 25 measures need to be taken to make this path easier for parents, including training more culturally competent service providers, providing interpretation services for parents, and informing parents of their rights to empower them through this journey. 26 Chapter 3: Methods and Methodology 3.1 Overview In this chapter, the purpose of the study is provided, followed by the research questions guiding the study. A detailed account of the methodological framework that the current study employed and the theoretical lens that guided this study is presented. Participant Recruitment, inclusion criteria, participant selection, and participant backgrounds are provided. The approach to data analysis is discussed, and ethical considerations and approaches utilized to maintain trustworthiness are also presented. 3.2 Purpose and Research Question The purpose of this study is to examine the experiences of newcomer parents in seeking support for their special needs children. The impact of their cultural beliefs and language on their understanding of their special needs childâs diagnosis, as well as their experiences with the service providers in seeking help for their child. Given the purpose, the following research questions guided this study: â¢ What are the experiences of newcomer parents of young children with special needs navigating support services? â¢ How are newcomer parents of young special needs children involved in their childâs education and care process? â¢ What cultural values impact their experiences with the new system? 3.3 Methodological Framework This study employed narrative inquiry to investigate various aspects of newcomer parents' experiences with the education and healthcare system. As Connelly & Clandinin (1990) 27 suggest, the first step in conducting a narrative inquiry is to identify the phenomenon as well as the concern by focusing on the research question and problem. The phenomenon of investigation was the newcomer parentsâ experiences in the education and health system through their stories, which was the focus of the research questions. Their experiences were explored through an analysis of their narratives to understand their challenges and where they stand concerning the system in their new country. Experience is an active process comprising a personâs ideas, relationships with others, and surroundings rather than being a passive phenomenon. It originates from human behaviours and how individuals interpret their lives and activities. This viewpoint moves the emphasis away from trying to find reasons for what happened, as reasons can restrict the opportunities for further research and wonder to a more open and flexible approach, where an experience stays the same even if it is subsequently understood differently, as advocated by Dewey's work (Caine et al., 2019). Narrative inquiry is a way of reflecting on the experience that is considered a storied phenomenon under study (Connelly & Clandinin, 2006; Murphy & Clandinin, 2009). Storytelling has within its nature a sense of sharing one's experiences in a natural, safe manner that helps participants express their true feelings outside the stress of being in a study (Horsley, 2007). This approach gave the parents, who may be experiencing challenges as newcomers to a new system, a chance to share their stories and gave them a voice and freedom to express their experiences without the boundaries of structured interviews. As McEwan & Egan (1995) state, narrative inquiry entails effective and distinct awareness, which assists in filling the gap between research and practice as well as its direct application. Expressing stories can help make participants feel they have a voice, and itâs distinctly important for participants who are marginalized and need more support, like newcomer parents. 28 The notion of narrative inquiry is that people can negotiate experience by sharing tales to better understand it as it is expressed and lived. âIn the dynamic interplay between experience and expression, experience gives rise and form to narratives, but it is also organized and given meaning in the tellingâ (Eastmond, 2007, p. 249). The leading idea for employing narrative in the field of educational research, as Clandinin and Connelly (1990) first expressed, is that âhumans are storytelling organisms who, individually and socially, lead storied lives. The study of narrative, therefore, is the study of the ways humans experience the worldâ (p. 2). This study was focused on a specific part of the participantsâ life story, the one related to the ways they explore, connect, and understand their childrenâs needs, the kind of support provided, and their place in this process; therefore, their stories start from the past and move to the present. For all narrative researchers, the primary question while representing and interpreting their participants is whose voice or voices, they are exploring (Denzin & Lincoln, 2008). During the process of this research, I was obliged to remember that I was positioned in the lives of families who are striving to connect their background understandings, culture and beliefs to their current experiences, hoping to feel more related to the system in the future. 3.4 Social Constructivism This study employs a social constructivist perspective to explore the experiences of newcomer parents through a narrative inquiry. The idea that individuals âseek understanding of the world they live and work inâ (Cresswell, 2009, p. 8) as one of the social constructivist philosophies is reflected in how the participants of the current study form new ways of being in their journey, which is adapted by their contemporary context and is demonstrated through the problem solution restorying process. Newcomer parents come to their current context with a wide range of knowledge, history and understandings of the world, which will then be influenced 29 and formed into a new meaning-making process once they start navigating the social construct they will be living in. This lens gave me the vision to explore the participantsâ narratives in the context of their current reality and how their background culture impacts what they experience now. Consistent with social constructivist theory, I position parents as active social agents whose meaning-making and understandings of special needs and the related processes are formed through contextual and cultural contexts. This orientation moves the conversations and interpretation beyond mere service utilization and more towards exploring the subjective experiences that are grounded in parentsâ navigation strategies and the strengths they bring to their new context. In the narrative inquiry methodology, during the data collection and analysis, knowledge is co-constructed between the researcher and the participants, which in narrative inquiry is referred to as narrative knowledging. Barkhuizen (2011) defines the process of meaning making and knowledge construction that takes place in âmultistage, active meaning making as narrative knowledgingâ (p.393), which takes place at different stages of the narrative inquiry research, namely, the construction of stories, analyzing them and reporting the findings. The narratives then unfold to be a product of a collective experience rather than the knowledge that exists before these processes. This aligns with Berger and Luckmannâs (1966) idea that reality and knowledge are produced on an ongoing basis and maintained through social interaction and institutionalized routines. In narrative inquiry, the interactions between the researcher and the participants externalize form experience into stories. Once they are analyzed and presented, they are somehow manifested as shared accounts. Readers will then internalize them back into practice 30 and identity, sustaining a socially defined ârealityâ of the phenomenon under study (Berger & Luckmann, 1966). Therefore, in the current study, narrative knowledging is tied to social constructivism as knowledge is not merely discovered in stories, but it is socially co-produced through conversations. My research questions investigate how parents experience and make sense of systems, for instance, navigating support services, involvement in decisions, and the impact of cultural background, and in a constructivist view, according to Berger and Luckmann (1966), these ideas are not fixed facts but socially produced meanings learned, negotiated, and sometimes resisted through everyday interactions with professionals, policies, forms, and communities. The truth is historically and culturally produced through conversations and shared practices rather than a fixed fact (Burr, 2015). Thatâs the core idea of social construction, where everyday categories become ârealâ through shared practices and language and what the current study strives to achieve. As Jaramillo (1996) states, while discussing social interactions, Vygotsky noted, âIndividuals interact with one another in social situations to socially negotiate meaningâ (p.136). With that in mind, I explore how parents, in interaction with service providers, educators, community members, and the wider systems, namely healthcare and education, form new meanings that help lead their path. 3.5 Ethics Ethical approval from the Behavioural Research Ethics Board (BREB) at the University of British Columbia was obtained before the start of participant recruitment. 31 3.6 Procedures 3.6.1 Recruitment Participants were recruited through organizations and institutions working with newcomer families, including Family Support Institute of BC, Developmental Disabilities Association, Childrenâs Hearing and Speech Centre, ISS BC, Good Life Kids, Diversity Canada, The Childrenâs Foundation, BC Centre for Ability, This World is Ours Centre, Mosaic and SUCCESS BC, BC Disability, and Variety BC Doner Services. These organizations were called and emailed, and all agreed to share the flyer in their newsletter or through word of mouth. Colleagues of the researcher from the University of British Columbia and several scholars in the field were also contacted to obtain information regarding institutions, organizations and service providers working with newcomer families and were asked to share the flyer in their circles. The research flyer was posted on the following Facebook groups: Families with Children with Special Needs, Special Needs Families Outdoors, Special Needs Children in Vancouver, Support Group for Special Needs Families, Special Needs: A Family Journey, Special Needs Community, Resources for Special Needs Kids, Support for Children with Special Educational Needs and Disabilities, and UBC Families. In addition, participants in the study were emailed a copy of the recruitment flyer to distribute to people they thought might be interested. Interested participants went to the QR code on the recruitment flyer and answered a two-minute screening questionnaire on UBC Qualtrics to identify if they met the inclusion criteria. (Appendix G). A total of 108 people expressed interest in the study. Of those interested, the 15 eligible participants were sent an email with details of the study and the consent form. Of that group, eight individuals responded (six mothers and two fathers), indicating an interest in taking 32 part in the study. Once the participants confirmed their interest, they were asked if they wanted to meet online or in person. Two out of the eight participants preferred an in-person meeting, one of which was conducted in a UBC meeting room and the second one at a coffee shop on UBC Campus, at the request of the participant. The other six participants were interviewed online via Zoom. At the beginning of the interview, participants were informed of the studyâs purpose and process and consent was reviewed. They were given time to ask questions and get to know the researcher to build rapport. Upon conducting the interview, one participant, a father, indicated that they were not involved in their childâs education and health processes enough to fully respond to the interview questions, so this interview was discontinued early. A second participant (also a father) and a third participant (a mother) had difficulty understanding and responding to the interview questions due to limited experience with the English language. The researcher followed up with all three, thanking them for their time and interest, and informing them that, given the limited information they were able to provide, they would not be included in the final study analysis. They were provided with a gift card as an appreciation for their time. While all participants were from two-parent families, only one of the parents, the mother, took part in the study. 3.6.2 Measures and Approaches to Data Collection 3.6.2.1 Overview. Data was collected using primarily semi-structured interviews. Three of the participants requested online interviews, which were conducted via UBC Zoom, and two of the participants preferred in-person meetings, one of whom, after the first in-person interview, informed me that now that she had met me in person and knows me more, she preferred the second interview to be online. The researcher met with each participant a total of two times to discuss the interview questions and share their stories. Other data collection tools include 33 screening questionnaires, background information questionnaires, and a reflexive journal. Interviews were transcribed using Microsoft Word on UBCâs OneDrive, and they were then transferred to NVivo to be analyzed and coded along with the researcher's notes. The approximate duration of data collection was five months to ensure the depth and breadth of data are maintained, and to ensure a meaningful exploration of the participants' narratives. 3.6.2.2 Screening Questionnaire. During the recruitment phase, participants were provided a QR code to use if they were interested in the study. A copy of the screening questionnaire is in Appendix A. 3.6.2.3 Background Information Questionnaire. Background information questionnaires helped gain a comprehensive understanding of each participant's background, including demographic details, childrenâs diagnosis and when they were diagnosed, which was crucial for interpreting the interview responses within the broader context of the participant's life and experiences. Having this knowledge helped tailor the interview questions and inquiries to each participantâs background. The Background Information Questionnaire was sent to the participants with their consent forms and was also reviewed at the initial interview session. A copy of the Background Information Questionnaire is in Appendix B 3.6.2.4 Semi-Structured Interviews. Two in-depth semi-structured interviews, between one and two hours each, were conducted with each participant (See Appendix C for the Initial Interview Guide). The focus of the first interview was for the participants to share their experiences navigating both education and healthcare systems, and the possible cultural and linguistic challenges and their strategies, as well as the process of diagnosis and follow-ups in general, giving them the space to share their authentic experience without being expected to focus on one factor. The second interview focused on parentsâ inclusion and involvement in the 34 decision-making process, both in the healthcare system and the education system. Online Interviews were audio-recorded using two recording devices to ensure all information from sessions was captured; one device was the UBC Zoom recording tool, and the second was the researcherâs phone recorder. All the recordings were password-protected after the interview. Three sessions were held in person upon the participantsâ request to create a convenient and comfortable environment for the participants to be able to share their stories in a safe, quiet space. The in-person interviews were also recorded using two recording devices, one the researcherâs iPad and the second one the researcherâs phone recorder. For interview questions, refer to Appendix C. After each interview, the recordings were downloaded and transcribed by the researcher in preparation for data analysis. 3.6.2.5 Reflexive Journals. After each session, field notes were made based on the researcherâs observation during interactions with the participants to supplement their stories with contextual detail. The researcher added entries to this journal during data analysis, reflecting on their perceptions and possible biases. During the process of data analysis, while reading the transcripts and narratives, I made notes of my interpretations. 3.7 Participants The study consisted of five newcomer parents who went through the journey of advocating for their childâs needs in Canada. This purposive sampling was used to take a wider lens and more diverse perspectives; these participants were selected from different countries, including Japan, Hong Kong, Argentina, and India. Two of the participantsâ children were assessed and diagnosed in their home country and had to have the assessments approved in Canada to receive special needs support services. Three of them had their children assessed and 35 diagnosed in Canada. All the participants were females and identified as the childâs mother during the time of the interview. See Table 1 for demographics of the participants. Table 1 Characteristics of Caregiver Participants and Their Child with Special Learning Needs Caregiver Role (Name) Age Country of Origin Years in Canada Child Gender Child Age (Grade) Diagnosis Mother (Milla)1 43 Argentina 2.5 Male 5 (K) ASD2; possible PDA3 Mother (Pooja) 40 India 5 Male 5 (K) ASD Mother (Yun) 36 Hong Kong 2.5 Male 5 (3) Hearing loss; ASD Mother (Mei) 42 Hong Kong 2.5 Female 8 (3) ADHD4; ASD Mother (Aika) 41 Japan 2.5 Male 4 (Pre) Down syndrome; Sleep apnea; Partial hearing loss Note. 1All names are pseudonyms 2 ASD =autism spectrum disorder 3 PDA = pathological demand avoidance 4ADHD = attention deficit hyperactivity disorder 36 3.8 Data Analysis 3.8.1 Restorying The data analysis process started by importing the transcripts to NVivo, and after reading the participantsâ stories multiple times, the transcripts were restoried to tell the narrative of each participant, which helped capture the experiences of each individual and flow in a logical order, based on the phenomenon being explored. The first step in restorying is to read and reread the transcript to be able to analyze and understand the lived experiences of the participants, which leads to retelling their narrative (Clandinin & Connelly, 2000). There are various approaches to restorying the data, and the current study employs a problem-solving approach rooted in Yusen and Ozcanâs (1997) theoretical perspectives of narrative thoughts. The structured flow of the problem-solution approach helps explain experiences by showing why certain actions were taken in the way they were. In this approach, the researcher revisits and reinterprets the original data to construct a new narrative, which is restructured to emphasize key events. Graphic organizers are used to help the researcher organize essential details into tables or maps, allowing for effective coding, sorting, and categorizing of the data. The problem-solution approach centers the restorying process around the attempts taken to address and resolve the issue, which in this study revolves around parentsâ navigation strategies and experiences. As suggested by Ollerenshaw & Creswell (2000), the transcripts were coded on NVivo to find different elements of the plot structure, including setting, characters, actions, problem, and resolution. These codes were demonstrated in tables, and restorying was done based on analyzing the sequence of the events that end with a possible or suggested resolution. In the restorying process, each participant was treated as an individual case. 37 3.8.2 Cross-Narrative Thematic Analysis There are two primary approaches to data analysis in narrative inquiry, rooted in Bruner's (1985) idea of various ways of comprehending the world, which are equally valid: narrative cognition or narrative analysis and paradigmatic cognition or analysis of narrative. Considering the theoretical framework and purpose of the research questions, in this study, an analysis of narrative approach was used to conduct an inductive cross-case thematic narrative analysis of the data (Polkinghorne, 1995). In an analysis of the narrative approach, data is classified and subcategorized based on shared characteristics. The intent is to examine stories, find major themes, and/or compare different narratives (Sharp et al., 2019). Riessman (2008) describes thematic narrative analysis as a method that concentrates on the content of narratives rather than language structure; in fact, language is viewed as a resource rather than the topic of inquiry. The whats of narrative production were the focus of this study's empirical and theoretical attention (Holstein & Gubrium, 2012). After everyoneâs narrative was written, I imported their narratives into NVivo and conducted a cross-narrative thematic analysis suggested by Riessman, where âprimary attention is on âwhatâ is said, rather than âhowâ, âto whomâ or âfor what purposesââ (2008, pp. 53-54). I began coding the stories inductively with a focus on the research question to investigate experiences of newcomer parents of young children with special needs navigating support services. How involved they are in their childâs education and healthcare process. Codes that commonly occurred through data-informed additional analysis and were recorded in conjunction with direct quotes from the participants. Riessmanâs (2008) cross-narrative thematic analysis informs the process of thematic analysis rather than outlining a concrete process. Considering that, I took the following steps to analyze the five narratives. I did an initial coding of the five 38 stories to highlight the main ideas that were discussed in NVivo, which led to around 80 initial codes (see Appendix E). I read and reread the stories while comparing the codes to find repetitive patterns, vague codes or codes that can be combined. Once I decided on the final list of codes, I coded all five narratives in more detail. Lastly, I reviewed the codes to create initial themes and subthemes. These themes and subthemes were cross-checked with a peer to finalize themes. Each theme is backed up by 2 or more participants NVivo was employed throughout data collection and analysis for transcription and coding of the data. The result of the data analysis was sent to participants in two stages. Participants were sent the narratives to ensure the true essence of their journey is captured to promote their engagement and provide them a chance for revision, specification, or correction of the reports. Once the data was analyzed, the results were shared with participants as suggested. In narrative inquiry, data has to be examined with the participants multiple times throughout the data collection, as well as before being finalized. Lastly, an analysis of the common themes that emerged in the collective stories was presented. Focused on the collective narrative analysis to suggest possible solutions for involving parents and ways to assist them with navigating the school system while maintaining their mental well-being. A flowchart of the data analysis stages can be found in Figure 1. 39 Figure 1 Data Analysis Stages INTERVIEW TRANSCRIPTION Transcribed in Word, uploaded to NVivo â RESTORY / PROBLEM SOLUTION APPROACH Organized transcripts into plot structure, created 5 narratives â THEMATIC CROSS NARRATIVE ANALYSIS Uploaded narratives into NVivo for analysis â STAGE 1: MEMO WRITING Reflections and analytic notes after multiple readings â STAGE 2: INITIAL CODING Coded text chunks into ~80 initial codes â STAGE 3: REFINING CODES Merged related codes, clarified categories, finalized codebook â STAGE 4: THEMATIC GROUPS Grouped codes into broader themes across narratives 3.9 Rigor This study employed Guba's (1981) criteria for trustworthiness in a naturalistic study to maintain rigor. According to Guba (1981), there are four criteria for evaluating how trustworthy a qualitative study is, including credibility, transferability, dependability, and confirmability. 3.9.1 Credibility Credibility refers to how true the findings of a study are, how a researcher can demonstrate the soundness of the chosen methodology and if the findings can accurately represent the phenomenon under investigation (Shenton, 2004). Peer debriefing, engaging in discussions, and receiving objective feedback from other professionals, supervisors, and peers 40 helped maintain credibility throughout this research process. Triangulation, as noted by Mathison (1988), including data triangulation (discussed in detail in the data collection section) and investigator triangulation, was employed to strengthen the credibility of the current study. To ensure Investigator triangulation, I met and had conversations with peers during the data analysis and interpretation phase to capture a broader range of insights and reduce individual biases. Member checks are at the heart of the credibility factor (Guba, 1981). Shenton (2004) suggests data accuracy checks can be done during and at the end of data collection. For this purpose, in the current study, the participants were reached out to twice via email to provide their feedback once on the individual narratives and once on the final analysis to ensure that we have captured what they intended to communicate. 3.9.2 Transferability Transferability refers to the applicability of findings to other contexts and populations. Collecting thick descriptive data according to Greetz (1973) facilitates transferability. This study achieved thick descriptions by conducting in-depth, semi-structured interviews with open-ended questions that allowed participants to share their experiences, perspectives, and stories in their own words. I ensured data collection methods are culturally appropriate through my years of community involvement, and being reflexive and self-aware through the process of data collection by reflecting on my own biases and assumptions and how they can impact data interpretation. 3.9.3 Dependability Two main aspects of dependability are stability and consistency of findings across time and among researchers (Guba, 1981). Drawing on Guba (1981), when the study is finished, a confirmability audit must be conducted. This audit will ensure that for every interpretation there 41 is a set of relevant, consistent data, which will be performed by the same expert in the field of education. For this purpose, an âaudit trailâ was established during the study by documenting interview notes and entering accounts of the research process in a journal during the process of the research. When the study was completed, a peer debriefing was done with a peer who assessed the audit trail. 3.9.4 Objectivity Ultimately, ensuring the objectivity of the researcher during the entire process of conducting a study sustains confirmability (Shenton, 2004). Triangulation, external auditor, and peer debriefing were implemented to confirm the neutrality of the findings of this study, which was achieved through employing multiple sources of data, consulting an expert in the field who is not directly involved in the study to provide unbiased feedback on the research design and findings, and involving one peer in the process of forming and analyzing themes. By applying these four criteria, I ensured that the findings are grounded in the data rather than in me as the researcher. 3.10 Chapter Summary In this chapter, the purpose of this study and the research questions guiding the study are presented. Narrative inquiry was used as the methodological framework for the study. The theoretical framework, social constructivism, is discussed. Ethical considerations and the recruitment process are highlighted. A brief background of the five participants is provided. Data collection tools included screening questionnaires, background information questionnaires, semi-structured interviews, and a reflexive journal. Details of the process for data analysis are provided. This chapter ends with a discussion of how rigour was ensured in the study. 42 Chapter 4: Presentation of Research Findings 4.1 Overview In this chapter, the findings of the narrative inquiry are presented in two formats. First, each individualâs story is presented in the form of their narratives that were co-constructed with the researcher in an attempt to delve deeper into their journey. Next, a cross-narrative thematic analysis is presented, where I reviewed the narratives and identified commonalities through themes from the stories of the parents. 4.2 Individual Narratives In this section, each individualâs narrative is presented using a problem-solution approach to restorying the data consistent with the approach outlined by Clandinin & Connelly (2000) and rooted in the work of Yusen and Ozcan (1997). In retelling the stories in this chapter, I referred to direct quotes to present and include the voices of the participants (presented in quotation marks). The parts of the text that are italicized indicate the researcherâs use of the first-person voice and reflections; the rest of the stories are third-person omniscient, with the researcher as narrator. Each narrative is followed by a plot table and a problem solution table. The plot table demonstrates the general storyline of each narrative, including initial situation, complication, suspense, climax and resolution. Narratives, just like well-crafted novels, center on a problem or tension which is referred to as a complication, a main character, and a causally ordered sequence that leads to some form of resolution (Carter, 1993). The problem solution table indicates the five elements of narratives suggested by Ollerenshaw & Creswell (2002), which were employed as codes to organize the plot structure and illustrate the lens through which each data set is analyzed. The narratives are presented in the order that the participants were interviewed. 43 The collected data for this study were rich and nuanced, grounded in two in-depth semi-structured interviews, each one around two hours, where the participants shared a wide range of emotions, reflections and stories. This offered a deep insight into the parentsâ experiences. After reading the transcripts multiple times and engaging closely with the data, I made the deliberate choice on which aspects to highlight in this chapter and the narratives. The analysis focuses on the parts of the data that answer the research questions, namely parentsâ navigation experiences, their sense of involvement with the systems and the impact of their cultural values. Additionally, I focused on the parts of the data that illustrate parents suggested or practiced resolutions to highlight their agency, success and strength they demonstrated in their journey. This focus is also consistent with the social constructivist theory, as it explores parentsâ meaning-making processes and offers practical implications for educators and healthcare providers, which are grounded in parentsâ lived experiences In exploring and stating the outcomes of these narratives, all participants described some sense of resolution. Employing a problem-solving approach to restorying provided the opportunity for this study to suggest resolutions based on the participantsâ experiences that would be of benefit to other families going through the same path. The resolutions that were similar across the participants and are important to discuss are strong and ongoing communication with providers, which in most cases were initiated by parents. Constant learning and building communities of support, consistent with Son et al.âs (2018) study, where community-based solutions were regularly used by parents to address specific navigational problems. Securing funding to access services was one of the main factors that assisted families in providing the much-needed treatment for their children. Advocacy is a skill that all the participants built over time and gave them the confidence and strength to carry 44 on. Forward thinking and planning are two of the exemplary strengths that all the participants showed throughout their navigation and immigration journey. In sum, the participants revealed that despite all the new systems they had to navigate and explore while taking care of a child with special needs, they all showed immense strength and enthusiasm, rooted in their love for their child, which is shown in different ways in various cultures. When they were heard and understood, they felt at peace and safe, and when they faced obstacles, they tried to find a resolution. Possible resolutions, suggestions include providing families with advising services to assist with team building and expenses, clear and accessible information platforms, and emotional support. 4.2.1 Narrative Account of Milla1 âHe's very musical. He loves music. He loves singing. He loves dancing. He has good rhythm since he was a babyâ¦ so he started piano, and he got engaged with piano, the teacher found that he has good memory. Good ear and rhythm, and he's very engaged there,â Milla said with joy when talking about her five-year-old son, Mateo. Millaâs expression was steady and confident, ready to share her story with clarity. In the spring of 2022, a family of four made the life-changing journey to move from Argentina to Canada. The decision was not simple, nor was it without sacrifice. Their 18-year-old daughter, on the verge of adulthood, chose to stay behind. âWe decided to emigrate when our son was eight monthsâ¦We started a process analyzing which countries could be good for us and how we can make it.â It is truly admirable how, from the very beginning, they began anticipating challenges and thoughtfully exploring their options. When you immigrate, it feels like you are being born again; however, this time you get to choose where you will be born, and that makes it both 1 The names of all mothers, the children, and clinics or schools are pseudonyms in this thesis document. 45 exciting and challenging, especially when you immigrate with children, with that added responsibility. When they planned to immigrate pandemic hit and delayed the process. They took advantage of the extra time and started learning English. Mateo started going to daycare when he was 10 months old, and when he was fifteen months, daycares were shut down due to the pandemic. He resumed going once daycares were open. âWhen he was two, the pediatrician told us that he was delayed in language, that he had fewer words and speech than he was supposed to, so we started with a speech therapist support since he was two years four months.â They started speech therapy in Argentina; however, his first speech therapist indicated he had signs of autism, and his second speech therapist said the opposite and stated he is fine. When Mateo was taken to professionals in Argentina at the age of two, the family was told it was too early to do any tests, and since their child seemed happy and social and the only issue was speech, they decided not to follow up on it and decided to see how things went in Canada. âBut it's because we don't know, yes, so we didn't do further tests for him before we came.â They seemed to trust the Canadian healthcare system more and preferred to do the diagnosis here if any. They felt life was as normal as it could be during the pandemic. The parents didnât know they had to follow up on the diagnosis or if it was anything that required extra attention. They moved to Canada when Mateo was around three and decided to send him to a daycare and observe how his language acquisition would develop. âWhen he arrives here, he hasn't had enough vocabulary because the main issue for our son is the speech or everything related to language developmentâ¦at the beginning was hard because he didn't have enough vocabularyâ. Mateo was not diagnosed yet at the time, and his parents assumed that he needed time to adapt to the new environment and language. It was eight months after he transitioned to 46 daycare in Canada when Mateoâs parents noticed subtle but troubling changes based on their observations at home and the daycare camera footage. He often sat apart from the other children, a quiet sadness settling over him. There were hints of frustration across his face during play and unsuccessful attempts to connect with others. While Mateo was in daycare, life around him was shifting in ways both big and small. Milla changed jobs, bringing a new routine into their home. His sister came to visit, adding excitement but also unpredictability to his days. Even the daycare itself wasnât constant; staff members changed, familiar faces disappeared, and new ones took their place. For Mateo, these changes were hard to process. He became more dysregulated, more sensitive to the world around him. It was a challenging time, a reminder of how deeply children feel the ripples of change. Concerned with what they observed, they took initiative and decided it was time to meet with the daycare manager. âShe was like very, you know, like shy to say that, and she said that he probably has some level of autismâ. Even though they had heard a similar suggestion in Argentina, the news came to them as a shock, and what they were more concerned about was that it was only when parents asked for a meeting that the manager suggested Mateo might have autism. The initiative and first inquiry were done by the parents; otherwise, maybe they wouldnât inform parents or would do it later! âSomething that also called our attention that daycare never tell us anything beforeâ¦for me, it's like the daycare should tell you something before. So, I was wondering if we never ask for a meeting. What's going on?â Parents were not informed of their childrenâs progress regularly, where Mateo went to daycare, and they were only provided with general information, such as he painted today, or he was happy today. âBut they don't give you like a follow a real follow-up of your sonâ. Parents felt stuck with the daycare because of long waitlists at other 47 centers. Despite their concerns, Mateo stayed at the same daycare because it was conveniently located within walking distance of their home That is when they started inquiring about services for him and started sending him to private speech-language pathology sessions. They were placed on a waitlist for a diagnosis that lasted several months. Although the daycare suggested a support organization, the parents were unsure how to proceed, so they emailed the manager to ask for the organization's name to be spelled out clearly, as verbal information was not sufficient for them, especially when they were just informed their child might have autism. Lack of communication is evident here as the daycare gives parents shocking news and verbal information while they are already overwhelmed. A lot of things are confusing or unknown to parents. Milla indicated that she had only recently heard about another organization that would provide support. One of their concerns with the waitlists was that their child was developmentally in a sensitive stage, and if they didnât get funding in time, they would lose valuable time. They sent Mateo to a private speech therapist biweekly. Once he was officially diagnosed and they received the funding, the sessions were increased to every week. When Mateo was diagnosed, they received a huge report which was confusing. âI found that it's like a lot of trauma and a lot of lonelinessâ. After that, they had one session with a therapist who suggested enrolling him in a private school, while they were still shocked and worried, thinking there was no cure for their son. They went on a waitlist for a private school but couldnât get a spot. âOnce you have the assessment, you need to apply for the funding, and then you need to build your team. But that's the other thing you need to build your team, you need to find who is going to give you the service? Who is going to accept the funding you need to match, you know, with the professional? So, then we found that it's hard also to find the therapist.â Parents felt lost 48 after receiving the official assessment, âSo as soon as you have the assessment, they say we can't help you anymoreâ. A couple of months of support after the child is diagnosed for parents on how to apply for funding and manage the budget for various services would have been very helpful. They lost one whole year since the daycare didnât communicate with them in time, and later with the waitlists. To avoid this, daycares should take notes of childrenâs development and analyze it and inform parents sooner if there is any concern. âSo, I really think that there should be like a duty of report.â Parents might have limited knowledge of child development, and professionals, such as educators, are a better resource to observe and inform parents in case there is a concern. âIf someone who studies and works with a lot of kids, they can noticeâ. When the daycare suggested the possibility of autism, Milla and her husband didnât waste a moment. They contacted their family doctor, who referred them to a pediatrician. The wait for an appointment, however, was another two months. During the appointment, Milla explained how Mateo had no eye contact with anyone, how he was picky with his food, and was unusually sensitive. The pediatrician agreed that he needed to be assessed and handed them a list of public centers, suggesting they explore private options if they wanted faster results. Determined to get help, Milla called every center on the list and started looking into private clinics. She believed the sooner Mateo was assessed, the sooner they could start treatment and access the much-needed funding. After months of waiting, they finally secured an appointment with a private psychologist. But when they arrived, they were told they needed a referral from the pediatrician, something they hadnât been informed about earlier. This led to another frustrating two-month delay as they transferred their files. But eventually, after all the waiting, the assessment was completed, and Mateo finally received his diagnosis. 49 The need for referrals is both helpful and problematic. On one hand, itâs helpful because it means all the necessary background information gets transferred seamlessly to the next doctor, creating a unified file. In her home country, however, each new doctor doesnât have access to previous records, which makes the process more complicated. On the other hand, the challenge lay in the difficulty of switching doctors and finding someone she truly felt comfortable with. Since they would be working with therapists for years, having access to more reviews, videos, or detailed information would help parents make more informed decisions, especially since requesting services often involves going on a waitlist. The cost of each service was also unknown, and for someone who is a new user of the service, âYou don't know if you're paying too much or too lowâ. An updated database for caregivers where they can find this kind of information would be a helpful resource. âSo, there is like a process that is not very clear, and you learn from other parentsâ. At their first appointment with the family doctor, Milla struggled to understand what the doctor was saying, and he told her she needed to learn English. The way it was communicated felt cruel to her, even though she acknowledges that knowing English would make things easier. What hurt most was that it was an intake session, and she was already stressed about whether the doctor would accept them. âSo, everything is stress here, that's the problem. It's not that you can relax you knowâ. They already had a speech therapist, but changed to someone from the list provided. Now they also had to decide what approach to take for his treatment and decided to go with the kind of intervention where parents get trained to do the interventions with their child. After noticing behaviours such as Mateoâs difficulty dressing himself and brushing his teeth, they realized he needed an occupational therapist, who was difficult to find and took a long 50 time to access. The funding, however, was not sufficient to cover the costs of therapists, as it has been the same amount since 2001, while inflation has resulted in price increases. One of the issues Milla found financially challenging was that every time they wanted to hire a new professional, they had to pay an assessment fee, which was mandatory to access the service. Services provided by their pediatrician were not satisfactory, as she refused to do any genetic or other kinds of tests to diagnose Mateo earlier. Milla expressed concern about Mateoâs eating habits, noting that he is very selective and eats only a limited variety of foods. She mentioned the need for tests to determine which supplements he might require. âAnd my pediatrician refused to do any researchâ. Milla started reading and studying autism research to understand her son better and be the best advocate she can be. But when she shared what she had learned, the pediatrician brushed it off with a dismissive manner: âYou read too much, there is no cure for autism.â The words sting. To Milla, it felt rude, like her efforts werenât valued. Deep down, she knows she deserves someone who listens and respects her dedication. However, itâs not that easy! âI didn't have the time and energy to do that, but I need to consider the possibility of asking a different one.â Financial factors also played a role in their relationship with the pediatrician. Unlike many others, he didnât charge for filling out forms, which usually cost between $100 and $200. For Milla and her family, this was a small but significant gesture that they found both positive and helpful. Changing family doctor and moving oneâs file cost $70, which felt to Milla like âProfessional are trying to take in advantage from the people and you're like a prisonerâ. She feels stuck in the system! âThat's the point that you don't have choicesâ¦our medical system is open, here the medical system is closed. You can go, you can pay 10 consultations from different doctors if you want,â she said, referring to the healthcare system in Argentina. 51 âThe thing is the economy here is crazyâ. Even though her husband earned a good salary, and she had been working a minimum-wage job the year before, they still didnât qualify for the kind of financial support that might have eased their financial situation. Every expense had to be carefully considered; every dollar stretched to make ends meet. They sent Mateo to piano and gymnastics classes out of pocket because they wanted to use the funding for occupational therapy (OT) and speech therapy. Rent alone was high, and when they first arrived in Canada, they were paying $1,300 a month for daycare. As newcomers, they didnât know about the childcare benefits right away. It wasnât until several months later that they discovered it existed, by which time they had already missed out on six months of much-needed support. Mateo had a hard time at the daycare. âThe administration of daycare was very rude. They didn't help us to set up the payments, and we didn't understand how the banking was here. Is different from our country, and they didn't help, and they was kind of, very rudeâ¦you need to pay me. Yes, well, that was really hardâ¦So there were some situations related to your kid that wasn't nice because I feel like you should be more friendly if you're in the fieldâ. However, at kindergarten, he seems happy. The school is prepared to assist children with special needs, and they have trained education assistants, teachers and support workers at the school. She refers to the strengths of the Canadian education system and how different it is from their country. They use email as a communication tool since it is easier to convey and understand meaning. âAs we have an accent, a lot of people have an accent, and a lot of people are from different countries, and not everyone is open to the effort to understand the other part in general in the processâ. She is not a shy person and is a strong advocate; however, at the beginning, it was hard for her to communicate as she wasnât accustomed to thinking and expressing herself in 52 English and wasnât comfortable communicating, but after socializing with people and feeling the need to advocate for her son, she felt more confident. When Mateo started school, things changed positively. The daycare lacked communication and exchange of information with them, which is not an issue now that Mateo is at school. There is more structure at school and different sources of information available, such as teachers and the parentsâ committee. Before Mateo started kindergarten, his parents had an interview with the school service providers, a general advocate, where they discussed their challenges and expectations. It seems like this kind of communication is what gives them peace of mind. Knowing there will be education assistants who are trained to work with special needs children, and your child is in a supported space, is reassuring. About a month into kindergarten, a case manager arranged a meeting with Mateoâs parents. The purpose was simple but meaningful: to get to know the family, learn more about Mateo, and begin setting some goals. Milla welcomed the invitation; it made her feel seen and supported, like they werenât navigating this journey alone. Other members of the support team were also invited to join, and Milla especially appreciated having their autism consultant worker there. Not only did she know Mateo well, but she was also the mother of an autistic child herself. Her insights felt deeply grounded and personal. Milla trusted that she might bring up things that wouldnât occur to her and her husband, things that come only with lived experience and a trained eye. Later, the autism consultant worker had the chance to observe Mateo in his school environment. For Milla, this felt like a gift. She believed that because the consultant was someone outside the school system, with no ties or obligations to the staff, her observations carried a more neutral weight. Milla trusted her perspective deeply and was genuinely thrilled that the school made space for this kind of support. It was one more step toward understanding 53 Mateo better and making sure he received the help he needed. âYou know he feels more connected, more engaged with the school than daycare. So, we are also feeling better about it because we noticed as he's happy going to schoolâ¦ We feel that we have more connection with the school than with daycareâ. When Milla talked about communicating with the school, there was a calm satisfaction in her voice. She appreciated the multiple ways they could stay connected and informed about Mateo. What stood out most to Milla was the schoolâs clear protocol: if Mateo ever missed a day, she had to email both the teacher and the school. It might seem like a small detail, but for Milla, it offered something invaluable: reassurance and trust. Knowing there was a system in place, and that someone was always aware of Mateoâs whereabouts made her feel that her child was truly being looked after. âThis kind of interaction, we are happyâ. When Mateo started school, they were a little nervous. Coming from a small daycare with just 10 to 15 children, Mateo had always been in a quieter, more contained environment. They assumed that transitioning to a school setting with so many more children and so much more noise might be overwhelming for him. They braced themselves for setbacks. But to their relief, Mateo adapted smoothly, and the fears they had quietly carried began to fade. His parents couldnât help but feel proud and deeply grateful. When Mateo started kindergarten, something shifted. Life began to feel more organized, more grounded. They started occupational therapy, met regularly with their autism consultant, and even signed Mateo up for gymnastics and piano classes. There was a new rhythm to their days, one that felt hopeful. Plans that once felt overwhelming were now possible. 54 According to Milla public schools in Canada have the same standard as private schools in Argentina. The school personnel and system in Canada have more understanding of special needs, and her son is getting the support and understanding he needs at school. Milla reads a lot of parenting groups and special needs groups on Facebook and finds it a helpful source of information. She now has a variety of techniques and a strong network to help her find information and support. Milla has a friend whose child is autistic too, and they exchange information. âShe will tell you everything she knows. It's beautifulâ. Finding peace via peer support. âThe only solution is checking, talking, connecting between professionals.â Milla and her husband have found their coping mechanisms in therapy, open communication, and shared practices. Milla turns to holistic therapy and counselling, as does her husband, both of which they find helpful in managing stress. She also notes how praying can be a soothing practice for her. Together, they talk through their situation, making decisions and supporting each other along the way. Looking ahead, when Mateo starts first grade, the funding will reduce from 20,000 dollars to 6.000 dollars, and the rest goes to the school to provide services. She has mixed feelings about this transition, on one hand, she is worried if all her sonâs needs will be met at school, on the other hand, she is grateful and believes the government is doing its best to support families like hers. Milla has a bright vision for the future. She is planning to send Mateo to community center activities and regular gym classes, as he is doing great at school, and she is feeling relaxed. She believes that with less funding, they might be able to take part in more community center activities, a hopeful way of looking at what lies ahead. Still, she remains flexible and open, ready to try different options and see what works best for Mateo. 55 There were days when he was dysregulated, and she was desperate to help him. Now he can express his needs to some extent and understanding him is easier. This is a process with ups and downs that requires patience and lots of communication with other parents, with professionals, counsellors and anyone who can help. It is not a one-person job. Now that Mateo is in kindergarten, âHeâs doing Well at school, I have a better job, or I mean a better job that I like. So yeah, it's like you need to also like enjoy what you have. He's doing great.â Table 2 Plot Structure: Newcomer Parents Navigating Canadian Education and Healthcare (Milla) Initial situation Complication Suspense Climax Resolution Millaâs experience of navigating the education and healthcare system in Canada Pandemic Mateoâs need for speech therapy Daycareâs lack of communication Mateoâs behaviour issues Waitlists Language barriers Stress and loneliness Feeling lost and lonely while struggling with career and finances Conflicting clinical opinions about the diagnosis Not knowing how to build a team after diagnosis and how to plan funding. Official diagnosis Transition to kindergarten Immigration milestones. Through sustained advocacy for Mateo, the family secured the supports needed 1ASD = autism spectrum disorder. 56 Table 3 Millaâs Restorying Process Using ProblemâSolution Narrative Structure Approach (Ollerenshaw & Creswell, 2002) Characters Setting Problem Actions Resolution Daycare Kindergarten Government Milla Father Mateo 18-year-old daughter Speech therapist Daycare manager Occupational therapist Family doctor Pediatrician Canada, Pandemic era Vancouver Argentina COVID-19 Mateoâ language delay Daycareâs lack of communication Daycare waitlists Assessment waitlists Parentsâ lack of information on how to build a team Difficulty choosing the right services Financial factors Making decisions Advocating Meeting people and socializing Paying for the diagnosis Doing therapy as self-care Finding the needed resources through advocacy and self-education 57 4.2.3 Narrative Account of Pooja Pooja approached with a determined demeanor to share her story. âI want to share the fact that it's very difficult for parents even to be informed about what the next step should beâ. A couple from India, who had been settled in the United States for years and had family there, decided to move to Canada around five years ago. It took around a year and a half for Pooja to get her permanent residence card. Vihaan, their son, was born in Canada. When he was six months old, Pooja noticed he didnât make eye contact when being fed, he had difficulty sleeping and other sensory issues. When he was 11 months old, he didnât respond to his name. When his mom pointed at something, he would look at her finger rather than the item. He was more interested in the parts of toys, for instance wheels of a car, rather than the car itself. Thatâs when she got concerned. When he was 14 months, his mom took him to the pediatrician, where she was told Vihaan is still too young and they need to wait. In two months, Pooja tried seeing the pediatrician again, and she was told to wait until he is two years old. However, Pooja insisted on a referral. Poojaâs persistence stands out as she tries to get a specialist to assess her son. Public clinics had long waitlists, and the private ones thought that he was too young to be diagnosed. For two weeks straight, she kept calling a clinic every day and persistently followed up on making an appointment and seeing whether there was a cancellation, as the waitlist was 6 to 8 months long. Finally, the persistence paid off, and when someone cancelled their appointment, Pooja could bring Vihaan in for the assessment. He was diagnosed with autism when he was 19 months old. âIt's like I had to do all the questioning. No one went through everything with me. I even called an autism focused organization, and I was told that I would have to find a provider on my own and a BI (Behaviour Interventionist) on my ownâ. Pooja seemed frustrated by the lack of 58 information and support, especially when Vihaan was diagnosed first, and she had no idea what the next steps were. She took the initiative to ask about the funding and what the next steps are. She seemed overwhelmed by both the diagnosis and the unclear path ahead. âSo, it was very tough to navigate. Yeah. And it's very stressful, especially when you're a parent who gets a diagnosis. It's very tough and itâs emotionally overwhelming, and then to navigate the systemâ. As Poojaâs concern was Vihaanâs behavioural aspect, she started behavioural intervention sessions for him. She was told he needs 25 to 40 hours of intervention sessions per month, and the funding was not enough to cover that. âI believe it was three times a week, and the funding wasn't even covering that; I would still have to pay $5000 a year out of pocket.â Pooja believes it was her persistence and determination that got her son a spot for the intervention and diagnosis; otherwise, it would have taken longer. She found a funding charity that initially supported Vihaanâs private assessment, and Pooja was very happy with this service, as they didnât have to wait long before they received the funding. She found a private centre to get Vihaan diagnosed through the list provided by the pediatrician. Pooja contacted a child-focused provincial organization when Vihaan got diagnosed, and once again, she took initiative to advocate for Vihaan. âThey're not very helpful. They don't help you navigate anything, and the lack of knowledge,â said Pooja hopelessly! She was assigned a social worker, but quickly felt the lack of support from their side. There was an instance when she grew dissatisfied with one of the services Vihaan was receiving and sought to make a change; she learned that they need to give three months' notice in advance. Frustrated and unsure how to proceed, she reached out to the social worker for guidance, only to feel unheard and unsupported once again. The experience left her feeling stuck in a system that seemed more focused on procedure than truly responding to her childâs evolving needs. âSo, I called the social 59 worker. I'm like, I don't want him there. It's not benefiting him. What can I do in this situationâ¦Well, the social worker wasn't very helpful. And I didn't know who to turn to. So, it's just a lack of support.â She feels that itâs her advocacy and pushing her way through that could get Vihaan services, and wonders what would happen if she didnât know English. When Vihaan was diagnosed, they were given a pamphlet with the required information, but âat that point you're so overwhelmed with all this paperwork that you just kind of want, like, a human being to sit and tell you like these are your next steps. And this is what you should be doing instead of just giving your paperwork and being like here you go, go figure it out yourselfâ. As Pooja spoke, her tone carried a quiet frustration, a sense that the process she had been navigating was both unfair and incomplete. When she first received Vihaanâs diagnosis, what she longed for most was emotional support, a space to process and to feel less alone. Instead, she found herself attending autism meetings that, while informative, lacked the human connection she craved. They were full of strategies and resources, but empty of the empathy she needed in those early, overwhelming days. That absence still lingers in her reflections, a reminder that information alone cannot soothe a parentâs heart. At the time, she was pregnant, and it was very hard for her to cope with the news. âIt was just really tough because I mean, no parent wants anything to be wrong with their child, right? And of course, that denial phase too. And then just to accept the fact that he has autism took a very long time.â Once she accepted the situation and the way things are, the process got easier. Itâs hard for families to build their own team once their child is diagnosed, and there has to be someone they can got to, to help build their team and find the professionals âThey're so overwhelmed and you know, emotionally overwhelmed that it's a lot to take on and it would lessen the burden if they didnât have to find their own BIâ. 60 Since Vihaan needed help to strengthen his social skills, they decided to do behaviour intervention (BI). âRight now, with the 22,000, all he gets is 2 days a week, and he only gets two hours each session, and then I have my own BI over the weekend, which I pay out of pocket.â Now Vihaan goes to a centre-based intervention service, and it makes it easier for Pooja since she doesnât have to keep track of the hours and do the extra work of finding a BI that pairs with her son, as it is done by the centre. Whereas if you want to build a home team, you must make all these plans, and this makes her feel supported and less stressed. Parents receive a progress report every month, which is helpful in communicating how Vihaan has been doing. Because this is an expensive and professional centre, she is getting high-quality services; otherwise, she would not get the same result. This reflects the financial factors at play when parents want to make these kinds of decisions. Pooja meets the BCBA ( Board Certified Behaviour Analyst) every three months, âso I am happy with the involvement, like my involvement with that centerâ. The kind of interventions Vihaan receives is based on the Denver Model because Pooja believes applied behaviour analysis (ABA) is robotic, and she wanted something more play-based for him, as it suits his personality and traits. Seeing how parents have a choice in deciding what kind of treatment works best for their children is a step toward respecting their role as advocates and partners in care. Pooja has a strong character and voices her concerns and opinions. âIt didn't matter to me how they perceived me as a parent. It was more like, this is my son, and if I need him to progress, I will voice that.â She is happy with Vihaanâs placement and believes her voice is heard. There are differences between the healthcare systems in the United States and Canada that have created confusion and frustration for them. In the states her son would see a 61 pediatrician and go on the waitlist to be assessed but while he would be on the wait list he starts getting SLP services through government funds, and doesnât have to wait until he gets assessed, however in Canada he has to get officially diagnosed before they can have access to funding âBut if you do have a diagnosis like autism, then you would just get more. You would just get more services. So it's not like they give you an annual amount of funding, itâs whatever the child is, it's on case case-by-case basisâ. Autism is a broad spectrum, and putting everybody under the same umbrella and providing everybody with the same funding might be enough for some parents, but not for others. Pooja often reflects on how much of Vihaanâs support has only come through her relentless advocacy. She has had to push her way through countless meetings, emails, and system barriers to ensure he receives even the most basic services. Itâs a constant effort, one she willingly takes for her sonâs well-being. But the thought lingers: What if I didnât speak English? What would have happened then? The question haunts her. She believes there is no one to show families how to navigate the system, âif I weren't familiar with the diagnosis, and I didn't speak English. Probably, he wouldn't get much help. He would probably be on the waitlist. As a matter of fact, he wouldn't even get diagnosed. I would be waiting on a wait list for two years, which is terrible because now you're just wasting crucial timeâ. All these speculations add extra stress and pressure and keep her wondering if she is missing out on anything, even now or along the way. The waitlist was a challenge to get Vihaan a spot at a daycare. Pooja spent hours calling different daycares and putting him on waitlists. She kept following up until she found him a space when he was 30 months old. âIt's very tough to find a placeâ. Between the ages of 20 and 30 months, he transitioned through three different daycares. Each change was guided by Poojaâs 62 deep attentiveness to his needs. Some centres were too costly, while others didnât feel like the right fit, especially for a child as high-functioning and perceptive as he was. Pooja knew he needed an environment that could truly recognize and nurture his potentials, and she was determined in her pursuit to find it. In the daycare, since there were fewer children and more educators, he got more attention; however, in kindergarten, he had to learn to be more independent, and it is a bit of a challenge and struggle for him as there is more demand and expectations. Now in kindergarten, Vihaan has taken his first steps into the world of school. Before his start date approached, Pooja met with the special education teacher at his school to better understand the support he would receive in the new setting. During the meeting, she was told that the school did not offer Speech-Language Pathology (SLP) services and that the Occupational Therapist (OT) only worked with children who had severe autism. The only support available to Vihaan would be a teacher assistant, someone whose time and attention would be shared among several students. Though grateful for any support, Pooja left the meeting with a heavy heart, knowing that her sonâs needs extended beyond what the system was currently equipped to provide. âThat's very frustrating even now, because I don't even know how am I supposed to get him services in school? There is no provider available in the school. So yeah, so it's like pulling teeth trying to get services for him,â expressed Pooja with a sigh. Using the metaphor of pulling teeth reflects how painful this process is to her. At school, Pooja is concerned about not getting SLP services for Vihaan. She has had a meeting with the teacher and principal. She is promised that Vihaan is going to be assessed, but they have not promised any services for next year when he is in grade one, and the funding is reduced; this is what worries her. Pooja is happy with the teacherâs communication, and they get 63 to communicate via email. Giving feedback and a progress report is a beneficial way to communicate with parents. Vihaan is taken to BI at school twice a week, which is reassuring for her. Pooja believes as she didnât go to school in Canada, she doesnât have enough information about the policies and services they are entitled to. âI was so emotionally depressed. That I kind of wanted a parent group to talk about how to accept the diagnosis.â Pooja shares that one of the ways to cope with the news is family counselling, but it is costly, and a better alternative would be parent-to-parent interactions for emotional support. âI was looking for some support, some just, you know, emotional support. And I wasn't getting that.â The feeling of loneliness still lingers. Poojaâs sister, friends, and husband supported her through the initial emotional need at the beginning of the diagnosis. âIt's so different for a mother than it is for a father. So that's why I was still seeking that emotional support, and that's why I was hoping for a group that I can just vent and probably just cry withâ¦I think that was the hardest part for me, not being able to find someone who could relate to my situation.â There is a lot of societal stigma and pressure around raising a child with special needs. Initially, Pooja felt like people were questioning her parenting strategies, âconcerned about how he's behaving around others and â¦that they're looking at me as a bad momâ¦I kind of shifted that attitude towards this is my child, and it's not his fault, and he's having difficulties himself, and he's not behaving poorly. That's just how he is, that's just how he's going to respond to the environment.â Once she felt strong enough to go beyond what other people might assume of her child and parenting, it was easier to take him out and interact with others. When Vihaan starts first grade, the funding will reduce to $6000 a year. Poojaâs plan for that time is to take him to therapy on the weekends; however, she has to see how much she will 64 have to pay out of pocket. Pooja is worried about him not getting enough services once the fund goes to school. The school does not provide speech therapy services, and they have an occupational therapist visit once a month, but they only see children who have severe autism, and Vihaan doesnât qualify for that service. âSo really the school will get that grant, but it's not going to change anythingâ. She is predicting that in the coming years, they will need to spend a lot out of pocket for his treatment, but what keeps her hopeful is that he is high functioning, and he might not need frequent interventions. âI know it's going to get more challenging as he ages, as Vihaan ages and gets into higher grades, because I don't know how much support he's going to need at that pointâ. Pooja expressed this a couple of times, which indicates the depth of her concern for what the future might have in store for them and how unclear the picture is. âI am worried because I don't know how things are going to turn outâ. He is currently doing well in kindergarten, but in the future, when school gets more academically demanding, things might change. Uncertain, blurry future, filled with hope and anticipation. âI don't know how that's going to be, and I donât feel very comfortable knowing that I don't have enough services for him because of the decrease in fundingâ. She still feels she doesnât have enough knowledge of the education system and recommends workshops or seminars to inform parents. âI still feel like I have to learn as I go, and it would be nice to just know everything beforehand instead of, you know, learning as I go because it just makes it harderâ. Hence, the journey of learning, growing, and exploration continues. 65 Table 4 Plot Structure: Newcomer Parents Navigating Canadian Education and Healthcare (Pooja) Initial situation Complication Suspense Climax Resolution Vihaan showed behaviours that concerned his mother, Pooja. The pediatrician advised waiting, while Pooja insisted something was wrong. Pooja persistently called and requested Vihaan to be assessed. Vihaan received a diagnosis, and the family gained access to funding. They began interventions with a centreâbased provider, and Vihaan attended a preschool with educators trained to work with children with special needs. 66 Table 5 Poojaâs Restorying Process Using ProblemâSolution Narrative Structure Approach (Ollerenshaw & Creswell, 2002) Characters Setting Problem Actions Resolution Pooja Vihaan Pediatrician BI1 Special education teacher Father Poojaâs sister and friends Social worker Children funding organization Vancouver The United States School The intervention Centre Wait lists Vihaanâs behaviour issues Lack of information Societal stigma Changing daycares Lack of support Too much paperwork Emotional needs of the parent Building your own team Uncertified BIs Lack of services at school Fear of future expenses Persistence through calling and following up Asking questions to find information Finding a service provider Choosing a Centreâbased service Advocating Asking questions Getting diagnoses Getting the funding Devour Model Acceptance Community support 1BI = behaviour interventionist. 67 4.2.4 Narrative Account of Yun Hao was born in Hong Kong in 2019 to a well-off family. His parents both worked, and a maid took care of him while they were at work. When he was born, he was diagnosed with bilateral hearing loss and had swallowing issues and therefore started seeing an OT (Occupational Therapist). Haoâs hearing loss was severe, and he had no hearing in either of his ears. He had a surgery in Hong Kong, and he now has implants that help process sounds and transmit them to the hearing nerves in the brain. Hao loves cars, numbers, colors and shapes. He can name and spell vehicles, which is impressive for his age. He has a good knowledge of colours and can tell lime from green, which makes Yun proud. He was sent to a nursery that specialized in communicating and teaching children baby sign language; however, after half a year, COVID-19 hit, and Hong Kong was one of the first countries to be impacted. The nursery was shut down, âthat's why, like there are, like really serious disruptions to our lives and also to his developmentâ. Everyone started covering their mouth with masks, which made it even harder for him to communicate. Luckily, he had implant surgery for his ear before the pandemic. In Hong Kong, children start school at the age of three or even earlier. When Hao was two and a half and had finished nursery, he went to a school specialized for hearing loss ages 2 to 6. âSo, in there they have like intensive trainings, like on how to like listen. How to read everything they get to prepare before their elementaryâ. Based on their observations, the social workers at the school, along with his nursery teachers, recommended that he undergo further assessment to explore the possibility of additional developmental needs. The parents made an appointment with a pediatrician to assess his developmental aspects. That is when he was suspected of having autism, and they were informed that they needed to see a psychiatrist and psychologist. As the wait queue was around one year, they decided to go on a 68 wait list as soon as they received this recommendation to make sure he would receive a timely assessment. By the age of three, Hao had shown little progress in his speech development, leading to growing concern for his parents. It became increasingly clear that a developmental assessment is necessary. Until this time, they still hoped his only challenge was hearing loss. When the political situations escalated in Hong Kong, Canada and UK opened pathways for people to be able to move and they decided to move to Canada as their research proved it to be a better choice considering their sonâs special needs âfor Canada, the education system I think is more free and less stress, and that's why eventually we choose Canadaâ. They had their second child in 2021 and moved to Canada in 2022. When they were applying to move to Canada, they noticed their son might be autistic and started planning for his treatment. Initially, Yun assumed her sonâs non-responsive behaviour was due to his hearing issues, and it didnât occur to her that there might be some other reason. Yun had heard that children with hearing loss might be more likely to be autistic, but she never really thought Hao might have autism. When he was half a year old, an occupational therapist told them that he might have autism, but because she didnât have a positive experience with that person, she didnât follow up on her recommendations. The significance of building a relationship based on trust is evident here. Yun had noticed Hao doesnât make eye contact, but she thought it could be related to his hearing loss. She feels like maybe if they had known earlier, they could have acted earlier, and somehow feels bad about it and blames herself. At the age of two, when his teacher also expressed concerns, they started to follow up immediately and look for information and support. Since she already had the idea that he might be autistic, the diagnosis didnât come as a shock this time. His parents started looking up information both from the web and from WhatsApp groups of families from Hong Kong who live in Canada and have special needs children, to find out 69 what kinds of documents they can bring with them to ease the process of his diagnosis in Canada. Their constant vigilance and forward thinking leave one in awe. In September 2022 Yun started preparing all the required documents âI have scheduled my son to meet with the psychologist, the speech language pathologist, the psychiatrist, the Pediatrics to get all the documentations, I heard that the queue here is really long and that's why I don't want to take the risk. I don't want my son to be without any support, like waiting for getting a diagnosis. So that's why I prepare everything in Hong Kongâ. They contacted the local hearing and speech Centre to ask for him to be waitlisted, so when he arrives in Vancouver, he will have a daycare to go to. They also scheduled a visit before moving. When they came to Vancouver, they started looking for resources for autistic children, reached out to the local family autism network, as well as families of autistic and hearing loss children, to find out resources and information on how to navigate through everything. Networking and community support play a significant role in how they were able to look for information and support their child. As the medical services plan (MSP) was activated after three months of moving to Canada, the family didnât have insurance. To avoid the wait to apply for autism funding, they paid out of pocket to speed up the process and visit a psychologist who could confirm their documents from Hong Kong and give an official diagnosis. Within a month of their arrival, they were able to get the documents signed and confirmed. They arrived in November and got the diagnosis for autism funding in January, which is unbelievably fast. Before going to school, Hao received physiotherapy and occupational therapy services from a local developmental clinic. They didnât provide him with speech and language therapy sessions since he was already provided with them through the daycare. In BC, if a child has 70 hearing loss, they are provided with free speech language services from either a provincial family hearing society or another child hearing and speech Centre. With the developmental clinic, children can receive free OT and physiotherapy services before school age, and then they have to pay for private services. SLP (Speech Language Pathology) is the only service they get at home now, and for the BI (Behaviour intervention) and behaviour consultant, they go to their center and pay from the funding. âIt's very difficult to find a suitable service for your kids. Yeah, it's really difficultâ. There is limited support, and finding a service that is suitable for the family and child is tough. Each time they want to start a service, they have to pay around $1000 for an assessment, and if they notice it is not going to work for them, they have to find another service provider and pay the assessment fee again. âSo, you're jumping around and like you don't want to jump around, but when you have to, like your funding, like run out really fastâ. In Hong Kong, Hao received SLP services that focused on training and strengthening mouth muscles, an approach Yun found helpful and effective. However, after moving to Canada, she noticed that this kind of targeted oral motor training was not part of the standard practice. Yun sees this as a disadvantage. When she raised the question with the specialists here, she was told that it might still be too early for this type of intervention or that Hao may not endure it well. This explanation puzzled Yun, as Hao had already received and benefited from similar services at the ages of two and three when in Hong Kong. The parents had a positive experience with the service providers, particularly the strong connection and open communication. They appreciated how the professionals involved took a collaborative approach when planning interventions for their child. School documents and reports from other specialists were carefully considered, ensuring that the interventions were 71 tailored to meet their sonâs specific needs. The service providers regularly kept the family informed, offering timely updates, practical suggestions, and relevant resources to support them in their journey. This sense of partnership gave the parents confidence that their childâs development was being thoughtfully and holistically supported. There is a mutual trust and relationship between Yun and the service providers, and they make decisions together based on discussions and observation of what works best for him. However, the need for more transparency in terms of the kind of services provided is evident. The family were suggested to look for services on the website where over 1000 services are available, and it gets confusing who they should reach out to, and how to make these difficult decisions on their own. Eventually, they had to figure out through trial and error, which takes up a lot of resources, time, and money. The service might not be suitable for the child and is chosen due to a lack of knowledge. The website merely provides the location of the service, the kind of services they offer and the language, while a good review where parents can get to exchange their experiences and make a more informed decision would be a huge asset. The lack of transparency around service fees frustrated Yun, as many behaviour intervention centres do not provide this information on their websites. As a result, caregivers are often required to reach out individually to each centre to inquire about costs and service details. In Yunâs case, she had to contact more than ten behaviour consultants before finally selecting one, which added unnecessary stress to an already overwhelming situation. Clear, upfront information would ease their journey and make accessing support more efficient. âIt's a really painful process and you have to go through thatâ. In December, they visited a child hearing and speech centre as planned, and when their son was offered a spot, they made the decision to rent a place nearby to make the daily commute 72 easier. However, shortly after signing the lease, they received an unexpected email from the centreâs manager. The message stated that their childâs needs seemed to align more closely with autism, and if they wished for him to continue attending, they would need to provide additional support. Otherwise, he could only remain at the centre for one hour each day. Communicating this unpredictable news after they had made their plans was shocking. âWe were really frustrated and like, we don't know what to do at that timeâ. The parents had to start looking for autism inclusive daycares and found one which required two and a half hours drive each day, for nearly half a year. âItâs very heartache for us for the first year or the first half year because like it seems like all the decisions that we made was wrongâ. Sadly, she blames herself for the unpredictable things coming their way. They felt rejected as the daycare was not willing to accept him. In June that year, they decided to pull him out of the autism inclusive daycare for multiple reasons. One issue was the traffic and commute; secondly, the parents felt that he hadnât been showing any progress. They went back to the hearing loss daycare with one-on-one support that they could plan with the funding. Managing the funding and making decisions on where to spend the amount is challenging for parents, and they decided to reduce his training hours to instead support him during daycare hours. One of the advantages of this daycare was that the children were visited by a speech-language pathologist once a week. Even though there was no support for his autistic needs the parents found the visits helpful. In the autistic inclusive daycare, there was no focus on the academic and cognitive skills, and Yun felt it was more of a play-based daycare, and there was less focus on discipline. While in Hong Kong, there is a lot of focus on discipline, and as Hao started there early, âHe is like a lot, disciplined than the kids here with autismâ. Hao was pulled out of that daycare because his parents believed he showed regression. Yun defines discipline as having more structure. She 73 stated that Hao doesnât scream; he has tantrums, but in comparison to children in Canada, itâs different. During their interaction with other autistic children, Yun felt her son was different and believed it was because of his background education in Hong Kong. Yunâs vision is partially shaped by her cultural background, where children are generally expected to follow their parentsâ rules. Yun found the teachers caring and loving, which made it harder for them to decide between switching the daycare; however, the significance of learning side for them led them to change his daycare. âI want him to learn more. That's my like main goal, and that's why I put him out eventuallyâ. They also felt that his speech was regressing, and he needed more focus on speech therapy at the daycare. Multiple factors were at play impacting his speech progress, one was that his hearing device had changed, another could be that the speech input at that daycare was not enough for him and thirdly change of environment from an all-Cantonese school to English. This is where the language issue comes in. âSo, I think there are lots of reasons going around that make him have a speech, regressions that some of the words that he used to pronounce correctly. I find that he cannot pronounce those words anymoreâ. Communication with the daycare was done either via email or end-of-day chat with the educators to discuss Haoâs behaviour issues and suggest recommendations. In addition to changing his daycare, Yun decided to ask the audiologist to change Haoâs hearing aid back to the previous setting, and they planned more intervention sessions for him to increase his input. âSo, at that time, I did a lot of changesâ. Iâm continually amazed by Yunâs perspective, how thoughtfully she reflects on challenges and how resourcefully she finds solutions. Hearing loss daycare was strict about the schedule, and if the BI was not there, he couldnât go to the daycare. âYeah, but of course I fight for that,â said Yun confidently. Yet, his 74 schedule was different from the other children as they all stayed until 2:24 in the afternoon, but he could stay until two and was not allowed to join the ending circle, which gave a sense of unfairness and rejection to his family. The family could provide three hours of BI, and he had to leave by 12 noon, but with their persistence through calls, meeting requests and emails, he was allowed to stay until 2 in the afternoon, the last couple of months before starting Kindergarten. Yun was told that a BI needed to be present during her sonâs nap and lunch times. This request puzzled her as he had always managed those parts of the day independently. Even the BI agreed that the additional support didnât seem necessary. âThat's tough, but I have to do thatâ. There is a sense of compulsion and desperation of having to put so much effort into being heard and advocating for her child. Sometimes, after having these tough conversations, they would receive emails that didnât support the decision that was made in the meetings. âI feel they don't really want to support kids with extra needs, like in addition to hearing loss. If that kid has another designation, I feel like they have a resistance, and also, itâs like strange that when I face-to-face talk to the in charge and confirm with the planning, the e-mail is always telling a different story.â Yun feels that since Hao has autism in addition to hearing loss, they are being treated unfairly. âClearly, I have stated myself really clearly confirmed several times and also told them that my behaviour consultant (BC) and my support worker all think that way, and then she'll say OK, OK. We can do that, we can do that, but in the e-mail it's just another storyâ. Hao went to the hearing loss daycare for one whole year before moving to kindergarten. Haoâs parents are pleased with the support he receives at school. They feel reassured by the care and attention given to his needs. Communication with the school has been consistently strong. Each day, they receive thoughtful notes on the communication board from his teacher, offering 75 suggestions, addressing any challenges, and sharing helpful tips. This ongoing connection has been a valuable source of support for the family. After their IEP (Individualized Education Program) meeting in October, the parents were impressed by how the class teacher has been able to know their sonâs strengths and needs in such a short time, even though there are 18 students in their class. In addition to the classroom teacher, there are two regular EAs (Education Assistants) who support him during the morning and afternoon. Yun believes that having an EA present is essential, not so much because of her sonâs hearing loss, but more due to his limited awareness of his surroundings. She has noticed that he often doesnât respond to environmental cues and requires direct engagement to pay attention. For Yun, the EAs play a significant role in ensuring his safety and helping him stay connected to whatâs happening around him.âI feel like he is really lucky to have the two EAs and also this teacher to support himâ. She feels school is a safe space for him, and he is receiving the support he needs. He also gets an FM (Frequency Modulation) service for his hearing aid at school. âSo, they have set up something in their classroom that whenever the teacher speaks, the teacher will speak through a microphone and that will directly go to his hearing aidâ. One of the biggest fears Yun had when Hao wanted to go to kindergarten was for him to be bullied, and the second was his academic progress, since he has autism and lives in his own world; he is mostly non-verbal and doesnât communicate. She was worried that he might not improve his academic skills. âSo, the biggest fears for me is like he go to there, spends six hours and learn nothing and go homeâ. But she is amazed by his improvement and how he can now spell words, and the feedback she received from his teachers about his engagement and enthusiasm has been reassuring. âI'm really grateful for that as well, and that's why I feel like, at 76 least, he's not being bullied, I guess, because he is always with the EA and also he's learning something every day. Yeah. So that's why I feel happy that he get into this schoolâ. In Canada, Hao's speech and language support is primarily rooted in a play-based approach, where he is encouraged to engage with toys to stimulate communication and motivate speech. However, Yun does not find this method particularly effective for him. Referring to their experience in Hong Kong, Yun shared that the educational and therapeutic practices there were more structured and teacher-directed. "Maybe in Hong Kong, the education system is more strict," Yun suggested, explaining that children were expected to follow instructions more rigidly, and Hao's speech therapy involved repetitive exercises that, while demanding, seemed to lead to clearer results. In contrast, Canadian programs prioritize freedom and enjoyment, which creates a happier environment for children, but one that, in Yunâs view, may lack the discipline she believes Hao needs to thrive. Yun believes being a little strict might help children with special needs develop. âLike if we don't force them, then they will always be behindâ. Her philosophy of education is influenced by the education system she was raised in Hong Kong, and which led her to believe in a more disciplined kind of behaviour and expectations; however, she thinks the free education system in Canada provides the opportunity for children to make mistakes and learn from their mistakes. Her self-reflection is admirable. In Hong Kong, the early education system is highly competitive, where children are interviewed before entering kindergarten. Once enrolled, itâs common for children to be taken by their parents to different extracurricular activities after school, often every day. While these experiences aim to enrich children's development, they place considerable pressure not only on the children but also on their families, who must manage these crammed schedules and high 77 expectations. Most of the homework requires parentsâ involvement, which causes a sense of competition and perfection among them. âYou always think that your kids is not enough. Because like all other kids are having so many additional thingsâ. Yun says that kind of pressure was the main reason they decided to move to Canada. Yun mostly chose Chinese service providers for her son since they knew Cantonese, which would make it easier for their son to communicate with them. However, his SLP is from Ireland, and they managed to build a good relationship. They had to change two SLPs before, and the issue was not a language barrier but the service providerâs inability to build a connection and relationship with Hao. âSo, I do think it's not really a matter of nationality or not a matter of language barrier, but it's the way that they connect is not workingâ. He now has two SLPs, one who practices English with him and the other who practices Cantonese. In Hong Kong, both parents had jobs; however, when they moved to Canada, circumstances changed. The father started studying, and Yun focused on taking care of the two children since there was no more support from the maid or their families. When Hao started kindergarten, Yun started doing a full-time job despite preferring to stay home and take care of the children. âWe don't have a choice, and so I have to work full time in order to get my kids into kindergarten without paying the International School fee,â said Yun helplessly. The funding is $22000, which will be cut to $6000 a year once Hao starts first grade. They are using the funding to provide him with BI and SLP. Yun finds the funding helpful but wishes they could continue receiving it after kindergarten as well. âI don't know, to be honest,â the future is unclear. He is currently having behaviour intervention sessions every day, and Yun believes he very much needs it every day, but with the funding being cut, they donât know how 78 to manage the expenses, as only one of them works, and itâs tough to pay for the sessions out of pocket. Yet there is hope, with their work permits being approved, she is hoping that her husband can find a job and with his insurance benefits, they can cover the costs of the SLP. âSo this year is actually the honeymoon, because I have the school support and I have the moneyâ. What shapes Yunâs sense of purpose is to help her son settle down as soon as possible, and this purpose drives her to proceed with enthusiasm and energy. She carries the full responsibility for making decisions regarding her sonâs care. While her husband is supportive, he relies on her to determine how the funding should be allocated, how many therapy sessions their son needs, and to manage the overall coordination of his support. This places the weight of daily decision-making and its outcome on her shoulders. Yun finds WhatsApp groups of parents who go through the same processes a great source of information regarding services, processes, and events. Community support has a strong positive impact on her journey. She finds talking to friends comforting, which provides her with much-needed emotional support. 79 Table 6 Plot Structure: Newcomer Parents Navigating Canadian Education and Healthcare (Yun) Initial situation Complication Suspense Climax Resolution A family of four with a son born with hearing loss, and autism navigating healthcare and education system in Canada Rejected by a hearing and speech Centre unless accompanied by a BI1 Difficulty finding services that worked for their son What to do during the pandemic How to find services in Canada How to communicate effectively with teachers and service providers Moving to Canada Receiving an autism diagnosis in addition to hearing loss Satisfied with his transition into kindergarten where he is supported Using funding to access BI and SLP2 sessions Finding a supportive community. 1BI = behaviour interventionist; 2SLP = speechâlanguage pathologist. 80 Table 7 Yunâs Restorying Process Using ProblemâSolution Narrative Structure Approach (Ollerenshaw & Creswell, 2002) Characters Setting Problem Actions Resolution Yun Hao Father Occupational therapist BI1 Daycare manager School teacher and EA2s Yunâs friends SLP3 Hong Kong Canada, Vancouver Covid 19 when widespread masking prevented lip-reading Daycare closures Yun needed to work full time to avoid international school fees for the children Daycare rejection after registration Communication gap with daycare Reduction of funding at age 6 Lack of information Moving to Canada as a better choice for their sonâs Ear implant Surgery Planning for diagnosis before moving Gathering required documents Enrolling in a hearing-loss school at age two Contacting a childrenâs hearing center Advocating Searching for information Open communication with service providers Choosing Canada for a less stressful learning environment Planning and cultivating a supportive community Obtaining permanent residency and securing a job with insurance to fund interventions 1BI = Behaviour Interventionist 2EA = Education Assistant 3SLP = Speech Language Pathologist 81 4.2.5 Narrative Account of Mei In 2022, Li and her parents moved to Canada; at the time, she was only five. When Li was diagnosed with attention deficit hyperactivity disorder (ADHD), her parents decided to move to Canada so that their child could grow in an educationally stress-free environment. The political situation in Hong Kong also impacted their decision. In Hong Kong, the focus of the education system is on academic achievements, and children need to follow the teacherâs instructions. If Li didnât follow the instructions, she would be punished, and that was a concern to her family. As her father worked in a Canadian company in Hong Kong, the process of their immigration ran smoothly. Li is an active and brave girl who loves reading, skiing and rock climbing. She was first diagnosed when she was four and a half years old. Her parents noticed some behavioural differences. She was highly energetic, didnât follow instructions, would leave abruptly while playing with other children and had difficulty making friends. If she were given choices A and B, she would choose choice C. In the meantime, a parent from her class whose older daughter was diagnosed with autism shared symptoms that were like Liâs behaviour, which encouraged Mei to investigate having the assessment for Li. However, the school had not flagged any concerns. Li was diagnosed with autism (ASD) and possible ADHD in Hong Kong by an educational psychologist. The diagnosis came as a shock, and her parents were not expecting Li to be autistic; seeking clarity, they visited another professional who confirmed the previous diagnosis. Initially, they were confused about where to find services and started looking for information. Connecting with a Chinese community also helped provide them with some insight, which led them to get in touch with a behaviour consultant who connected them with social 82 groups. They also began reading extensively and taking courses to learn more about the diagnosis. Before moving to Canada, the parents ensured they had an official assessment that met international standards in English to make it easier to access services in Canada. Upon arrival, they found out that public assessments could take up to three years, while private assessments had wait times of up to five months. Mei persistently called over 120 service providers until she found one who could approve the documents promptly and at a reasonable cost. This determination reflects Meiâs resilience, problem-solving ability, and unwavering advocacy for her daughter. Mei found it frustrating that service fees varied greatly and were not transparent, needing extra time and effort to confirm. And once they choose the service, there is a long waitlist. She found the behaviour consultant and interventionist by looking up and asking questions. In Canada, post diagnosis, parents met a social worker, âBut she always just referenced us to a web pageâ. Meeting the social worker didnât seem to be productive! Finding a Behaviour Consultant (BC) was challenging due to long waitlists. When they eventually found one, the consultant invited them to join social groups, and these did not meet Liâs needs. When they discussed Liâs behaviour and how she can benefit from more support in the social-emotional context, she assisted them in finding a Behaviour Interventionist (BI) to work with Li at home. Communication with the BI was strong, and the parents felt genuinely involved in the intervention planning. Their connection to the BI is based on trust. âSo that we have the same culture background, maybe we share the same view of yes, we share the same view, yeah for the 83 guidance of the children.â Mei felt fortunate to connect with a BI who shared a similar cultural background and a sense of shared perspective and trust in Liâs care processes. When Li started going to school in Canada parents decided not to communicate her diagnosis done in Hong Kong. They were hoping to observe how she adapted to the new system; however, the same pattern emerged where she was alone during recess with no friends. The teacher didnât notice anything alarming, yet the concerned parents decided to share her diagnosis with the school. They also started the process of getting the diagnosis they received in Hong Kong approved in Canada, which took half a month, and once it was approved, they shared the official documents with the school. Due to full enrolment at their catchment school, Li first attended a neighbouring school. Mid-year, she was transferred to her designated catchment school, where the environment proved more supportive. Mei observed that the new school staff appeared more experienced with special needs children. The resource teacher initiated an individualized education program (IEP) meeting with the parents, and two EAs were assigned to assist. Still, Li remained alone at recess, which worried Mei. Despite that, Mei felt the objectives set in the IEP meeting didnât align with Liâs capabilities and were too limited. Cultural pressures from their predominantly Chinese neighbourhood and focus on academic success continued to shape their expectations, and Mei believed Canadian second-grade academics were comparable to Hong Kongâs kindergarten level. âI don't really appreciate about that, but we can do nothing about itâ. There is a sense of helplessness in her voice. During the first year, Li met with her behaviour interventionist weekly to develop emotional regulation and social skills. However, by the start of third grade, her parents 84 transferred her to a private school, as they believed the public system lacked meaningful support. âAnd in the new school there are EA in the classroom. Although this is not one-on-one support, but they keep an eye on her and they keep some regular social group and some pull-out activity as well, and also we joined a speech therapy program in the school.â In the public school, the resource teacherâs words came as a shock to Mei. When she expressed concern about the lack of support Li was receiving, she was told that since the family already had funding, it was their responsibility to use it for her training outside of school. âSo finally, we make the decision which we change to another schoolâ. Mei says, laughing nervously. Mei was a second-grade teacher in Hong Kong, where students with dyslexia and other needs received extra classes, but in Canada, she sees little targeted support. âWho benefit from this kind of system that is question for meâ she remained silent, reflecting on the question. âThis is not real inclusion. They need to strengthen their skill. But I thought that in Canada, this is the only inclusion, but not strengthening their skills. When I talk with the school resource teacher, they told me that you should strengthen her skills outside the school.â While children spend a big chunk of their day at school. There needs to be more training inside schools, so parents wonât need to seek help outside school. âWe have around two years of experience at the setting in school does not really, tailor made for the kids. For uh, for my kid, she had no support in school, so even uh, she had training program outside of the school, as the environment is different, this does not help my daughter a lot during this period.â Attempts to transfer Li to private schools were complicated by limited space, as many only accept one child with special needs per class. Through her network, Mei found a place for Li at a local private school, proudly highlighting her ability to advocate. 85 When Mei expressed concern about Liâs isolation during recess, they added social integration as a goal in her IEP. Unlike the public schoolâs biannual reports, the EA at the private school provided weekly email updates, reassuring Mei that Li was receiving focused educational and social support. This indicates the significance of communication and connection with caregivers on an ongoing manner. As a supervision aid on call, Mei has a broader perspective that comes from working at different schools in Vancouver. âI think that the EA support in the public school system is only maintain the kidsâ. Just to keep them from getting hurt, she says, laughing critically. No education or training is happening. âThey seldom teach them anything. That's what I see. What I feelâ. Severely challenged students get one-on-one support, while mildly challenged students like Li are left with none. Mei believes inclusion is implemented unevenly and often doesnât meet the real developmental needs of children. Respecting individual needs is appreciated and significant; however, what can be done to help everyone grow is the question. She is appreciative of the funding, but the reduction of funding reduces their access to much-needed services, which is why they are considering cancelling the BC and BI services and only focusing on speech, language therapy. Mei remains deeply reflective and concerned about the future. She sees a lack of balance in Canadaâs inclusion philosophy. In Hong Kong, even children with special needs are expected to sit still and complete their tasks, following a structured routine. In contrast, Mei has observed that in Canada, children are given far more freedom in how, or even whether, they complete their tasks. âFor the ASD student, they already not listening the instruction from parent or from teacher. However, they don't mind whether the kids follow the instruction or not because the culture is it's not obey, that's not obedienceâ. As she reflects on this difference, Mei laughs, but 86 her laughter carries a tone of criticism. To her, the lack of expectation for task completion in Canadian classrooms is puzzling and concerning. âSo, that I even and my kids got problem in this area they don't think that this is a problem they just think that lots of students do like this as well they will grow after they grow up.â Mei is not certain whether her experience is representative of all Canadian schools or just specific institutions. For Mei, inclusion is not just presence; it is about meaningful, aligned support that encourages confidence and growth. Mei finds peace in speaking with her counsellor and engaging in support groups. Talking with other parents who share similar experiences gives her strength and reduces stress. Her husband attends IEP meetings to assist with English communication, and they regularly connect with other families through a Non-Government Organization (NGO), which provides emotional support and information exchange. Table 8 Plot Structure: Newcomer Parents Navigating Canadian Education and Healthcare (Mei) Initial situation Complication Suspense Climax Resolution Family moved from Hong Kong to Canada for a stress free learning environment for their child Ongoing social and emotional struggles at school as well as ineffective inclusion in public schools Discouraging interactions with schools and specialists Decision to leave public system Transfer to Christian private school Continuing challenges such as funding limits, cultural expectation mismatches Mei pursuing balanced, intentional inclusion 87 Table 9 Meiâs Restorying Process Using ProblemâSolution Narrative Structure Approach (Ollerenshaw & Creswell, 2002 Characters Setting Problem Actions Resolution Mei Li Parent at school Educational psychologist in Hong Kong Teacher at the first school Teacher at the catchment school The two EA 1s Behaviour consultant Social worker Hong Kong Canada Noticing concerning symptoms Li being alone and having no friends Chinese neighborhood in Canada with pressure on academic achievements Finding a BC2 No evident support in the public school system EAs keep SN3 children safe but little learning reported Having Li assessed twice Looking for information and taking courses to learn about autism Sending Li to a Christian school Calling 120 service providers to get the assessment approved BI4 services Speech therapy Christian school with more support and EAs 1EA = education assistant 2BC = Behaviour Consultant 3SN = special needs, 4BI = behaviour interventionist 88 4.2.6 Narrative Account of Aika Aika, her husband and their three children lived in Japan. They were both working there when her husband got relocated to Vancouver, and Aika quit her job. During those days, their main concern was their youngest son, Minato, who was diagnosed with Down syndrome, bilateral hearing loss and sleep apnea. Never living outside Japan, they did not know the kind of services he is entitled to in Canada and how to access them. The parents began preparing early by talking to doctors in Japan and making inquiries into services in Canada. The process of moving ran smoothly as the company facilitated their visa process. However, the unpredictability about services for Minato persisted. Minato is a happy child by nature who loves playing with cars and trains and playing catch. He is a big fan of music. He is open to exploring new activities, and at the preschool, he goes to different stations to play. âBut he's slow in development, so he doesn't really speak. He needs a lot of support for himâ said Aika. When Minato was born in 2020 during COVID-19, the doctors immediately noticed differences and ran tests confirming Down syndrome and hearing loss in his right ear. âAfter the born is the most hardest time.â They were concerned and had so many unanswered questions on their mind. At first, Aika knew little about the diagnosis and wasnât given clear guidance. The isolation of the pandemic made things more difficult, especially with Minato spending a month in the ICU and only limited visitation permitted. âIt was only like one hour per day that I could see him.â Aika laughed nervously. She felt lonely, not having the opportunity to share this with others due to COVID-19 restrictions. She wasnât even certain if Minato had Down syndrome, as it seemed hard to accept and deal with alone. It was a difficult couple of weeks of anticipation to hear the test results. 89 Minato later developed sleep apnea due to enlarged adenoids and tonsils. He was around one when he started having difficulty breathing, specifically when he caught a cold. Aika was warned that he might eventually require surgery. She began looking for information on the internet and joined communities of parents with children who had special needs. âBut the newborn, that time was very difficult because we didn't have information, and also they werenât people, there werenât people that who gives us information.â Aika believes the Japanese system is not very supportive. A particularly heartwarming booklet, designed by a fundraiser consisting of parents of special needs children, distributed in the hospital reassured her with a simple but powerful message: âDonât worry, weâre here to help you.â Aika was worried about their lack of knowledge of the new healthcare system, as their son had to go to the hospital and doctor, and they didnât know where to go. Therefore, they started looking for information which wasnât easily available. âAt that time, I couldn't really I didn't know that. I couldn't really know why I need to contact these like associations. Maybe that's because my English understanding or maybe I get a lot of information so that which one is, I didn't know which one is the important information.â She also found two families who shared their experience, and as they could speak in Japanese, it was more comfortable to communicate. Before moving to Canada, Aika contacted a Down Syndrome resource foundation and the provincial childrenâs hospital, which provided them with some significant information. They were registered and accepted to the Respiratory Clinic at the provincial childrenâs hospital before coming to Canada. Though they couldnât bring Minatoâs Continuous Positive Airway Pressure (CPAP) machine, as it was expensive and a loan, the provincial hospital loaned them one. After six months, his breathing improved, and they returned the machine, relieved to have had access during unpredictable times when he could get a breathing problem at any time. 90 Working out the healthcare system in Canada was overwhelming at first. Aika struggled to find clear, accessible information and didnât know, for example, that emergency rooms could handle ear infections. Because of waitlists, she had to rely on a walk-in clinic when Minato ran out of his ear drops and waited half a year for an ear, nose and throat specialist (ENT) appointment, during which Minato developed an ear infection, and all they could do was to keep the ear clean until they got an appointment. âI also called the walk-in clinic doctor and if they actually send the letter to provincial hospital and they said yes so then we had to wait. Until we get the phone call from the hospital.â Said Aika, feeling helpless. Although Aika appreciates the services available in Canada, accessing them has not been easy. The wait times have been long and, at times, frustrating. Minato was on the waitlist for one year before receiving physiotherapy at a developmental clinic, and it took two years before he could access occupational therapy. Securing these services required persistence and determination. Aika had to navigate a complex system on her own, searching tirelessly to find the right contact person at the provincial childrenâs hospital. Despite her efforts, she has still not been able to find a social worker for Minato as spots are limited, and the demand is high. She is overwhelmed with the things she has to follow up on. The process has been slow and exhausting, but Aika continues to advocate for her son with resilience and patience. âSo, maybe that's because my knowledge is wasn't very not enough. So, nobody tells us where to get the social worker or a pediatrician. And any services.â She found notable differences between treatment protocols in Japan and Canada, especially in ear care and hearing-related interventions. âWhat the doctor says here and also in Japan is a little bit differentâ. She found it confusing. 91 In Japan, fluid from ear infections was washed out; in Canada, only ear drops were prescribed. The conflicting advice about ear tubes left Aika uncertain about the best course of action. As Minato has no hearing in his right ear, the Japanese doctor advised them to keep a tube in his ear to prevent the fluid from being stuck inside his ear and to keep his ear clean. Yet, in Canada, as soon as they found out that he didn't have hearing on his right side, they were advised to remove the tube from his ear. âSo, this point I'm still. Don't know which to follow.â Ultimately, she decided to follow the Canadian physicianâs approach, though it placed the responsibility of decision-making on her. She eventually decided to do the surgery for him based on her experience, âBut I feel like pressure on that risk, yeah, so sometimes we have to make decision and yeah.â She laughs nervously but triumphantly. It seems hard to put the decision-making burden on her. âI think both doctors are correct so I'm not sure which ones are good or bad but we just follow what current doctor says.â She said with uncertainty. Akia joined a community of Japanese families with Down syndrome. Thatâs where she heard from one of the parents about provincial Family Services and hearing resources. Akiaâs communication with other mothers helped her find a pediatrician. Her sonâs friend's grandmother was a pediatrician and accepted them without having to join a waitlist. The pediatrician gave them a medical check-up list for Down syndrome and informed them of the blood tests and spine check-ups available for Down syndrome. âSo, we were so lucky that my son could find a pediatrician, and she follows up very well.â Now, after two years of living in Canada, whenever she needs information, she knows who to reach out to, but when they first moved, she didnât have access to information sources and âI had to go and get that informationâ. 92 However, once the designated child is on the right track, where Aika sees her son now, they get the maximum support that they require to develop their strengths. She admires the systemâs focus on individual abilities and strength-based vision. Even though Minato has a speech delay, they never received any comments that would discourage them, and they feel supported. âSo, their mindset is very supportive and positive, and it helps the family a lot,â said Aika with content. In Japan, Aika planned to enroll Minato in the same daycare that her older son and seven-year-old daughter had attended; however, when hearing his diagnosis, they refused to register him. The refusal came as a distressing experience to the family. Feeling disheartened but determined, Aika asked for help from other parents, who guided her toward a more inclusive daycare. Luckily, this new center welcomed Minato with openness, offering the acceptance and support the family had hoped for from the start. Once they were in Canada, Aika got in touch with a nearby preschool. They referred her to a local developmental clinic for an assessment. The results stated that Minato was identified as needing extra support. He started in a one-day-a-week infants and toddlersâ program, two hours a day with one-on-one support, and eventually moved to a three-day-a-week schedule when he turned three years old. That is when the preschool informed the family of their funding limitations. Aika applied for support through the developmental clinic, securing 12 hours of one-to-one support weekly. They started sending Minato to a local daycare for children who are deaf or hard of hearing in May 2024, which provided support to his hearing needs and free SLP services. âAnd he really enjoys his life now, yeahâ. The SLP contacted the provincial childrenâs technology team, and they provided the device for him in no time, both at home and at the center. The 93 teacher assisted them with applying for funding to keep the machine longer and filling out the forms to extend access. Communication with the daycare has been positive. Aika has regular meetings with the SLP and teachers to discuss goals and progress. Aika contacted a Down Syndrome resource center, which ran some free programs to prepare parents for their children entering kindergarten. They enrolled for the program in summer 2023, and âit was really good input for me or what should I prepare for entering the kindergartenâ. Her older children attend the same school, and she feels confident about the teachersâ awareness and willingness to support Minato. Minato turned five this April, and they were offered free occupational therapy and speech-language pathologist services at the developmental clinic. The only downside is that this program is not guaranteed to continue in the future. Aika is planning to apply for funding and private SLP services, as they are not provided at school. Upon arriving to Canada, Aika applied for support from a Down syndrome foundation, but even the intake meeting cost around $300. Therefore, Minatoâs parents decided not to do the session. The foundation also offered funding for several programs; however, they didnât qualify for the program as they were above the family income limit. âBut we are family of five. So that time it was not possible for us to pay for these private servicesâ. In Canada, Minato is supported with multiple tools that enable him to communicate in ways that are aligned with his needs. One of the most helpful resources has been the Augmentative and Alternative Communication (AAC) talker device, a monitor with buttons that Minato can press to express himself. Unlike in Japan, where such technology is scarce and communication is often narrowly defined, the Canadian approach is more flexible and child centred. Minato is not pressured to speak verbally; instead, his educators encourage multiple 94 forms of expression, including gestures, the talker, and sign language. This holistic philosophy, in contrast to Japanâs more rigid educational expectations, allows Minato to participate and thrive in a way that honours his unique abilities. Aika noticed a clear distinction between the education systems of Japan and Canada. In Japan, there is no flexibility and exceptions are rarely made, and children with different needs are often directed to specialized schools. Aika felt that such an environment would not be welcoming or supportive for Minato, whose learning needs require more individualized attention. In Canada, however, she found teachers are more open and compassionate, taking the time to understand each child as an individual and are more focused on their strengths. Minato is accepted for who he is. Aika feels genuinely included in the Canadian system, a feeling that is in contrast to the exclusion she experienced in Japan. Aika is empowered by her Japanese community in Canada. Connecting with parents of children with hearing loss and Down syndrome has been heartwarming. She regularly attends coffee meetups, playdates and finds emotional balance through gardening in a local community garden. âI think we always need like hobby time, and I like to grow vegetables. I did it in Japan, and so I wanted to continue it here, so I went to the community garden, and I got a patchâ. She shared that talking to others who share similar experiences is her most effective coping strategy for parents who have been through exploring and navigating the complexity of the system. She also reflected that once the child is placed in a well-supported setting, services are more consistent with their developmental needs. Now that Minato is happy, the diagnosis is not an issue for them anymore. While their time in Canada is temporary due to her husbandâs work contract, Aika worries about returning to Japan. She fears losing the inclusive support Minato now enjoys and 95 predicts needing to advocate much more just to secure basic services later when they return to Japan. âBut here teacher listen to us or listen to parents or the kids if we say, we need this and they support usâ. She remains unsure about which medical advice to follow in some areas, but overall feels heard and respected in Canada. She values that teachers and healthcare professionals take time to explain decisions and ensure family input. âThey always make sure that we agreeâ. What they will experience in kindergarten remains unknown to her; however, their journey with the preschool so far has been very positive. Table 10 Plot: Newcomer Parents Navigating Education and Healthcare in Canada (Aika, Fifth Participant) Initial situation Complication Suspense Climax Resolution Minato and his family move to Canada for his fatherâs job Unfamiliar Canadian healthcare and education systems Long waitlists and unclear referrals Inconsistent medical advice between Japan and Canada Community networking connected Aika to a pediatrician Identified a preschool that welcomed and supported Minato Secured funding and appropriate services Felt included and respected in Canadian society 96 Table 11 Aikaâs Restorying Process Using the ProblemâSolution Narrative Structure Approach (Ollerenshaw & Creswell, 2002) Characters Setting Problem Actions Resolution Aika Minato Father Two older siblings Japanese doctor Canadian pediatrician Audiologist ENT1 specialists Preschool teachers SLP2 Community parents A hospitalâs staff OT3 PT4 Japan Vancouver Emotional isolation after diagnosis Uncertainty about Canadian healthcare and education Lack of information Long waitlists Cultural and language barriers No access to social worker High cost of private services Lack of immediate healthcare services Preschool funding limits Researched services before moving to Canada Reaching out to relevant healthcare services Joining parent groups and playdates Navigating walkâin clinics for urgent care Advocating for funding and services Communicating regularly with school and medical staff Appling for funding and education support Community support from Japanese parents Applied for and received funding Preschool enrollment with support hours Found pediatrician via Japanese network Regular communication with teachers and therapists Joining community garden to maintain wellâbeing 1ENT = ear, nose, and throat specialist 2SLP = speechâlanguage pathologist 3OT = occupational therapist 4PT = physiotherapist 97 4.3 Cross-Narrative Thematic Analysis 4.3.1 Overview After careful comparison and analysis of the stories, the findings identified a movement from initial puzzlement and shock towards advocacy and navigation processes and finding resources and services through advocacy, communication, and community support. As a result of this analysis, six main themes emerged from the participantsâ narratives. Findingâs unit of analysis/ inquiry (Riessman, 2008) is parents' experiences with both the healthcare system and the education system in mind. While referring to the healthcare and education system, this study investigates parentsâ experiences in the process of diagnosis, treatment, and available funding, as well as communication with healthcare providers and educators, school personnel, parentsâ involvement and autonomy in decision making, competence, and the ability to understand and navigate the support services provided. Table 12 illustrates the themes and subthemes that appeared across the five narratives. As informed by the problem solution approach, the themes that were identified in the cross-narrative analysis address what challenges parents faced and how they approached and found potential solutions for them. These themes were cross-checked with a peer to finalize the themes. 98 Table 12 Themes and Subthemes of the Cross Narrative Analysis Themes Subthemes Between the Two Worlds Communication as a Bridge or Barrier Effective/Open Communication Lack of Communication Healthcare Navigation Confusion of New Users of Services System Limitations Strengths of the Healthcare System Parents as Persistent Advocates and Decision Makers Self-Education Forward Thinking Taking Initiative Financial Factors Funding Limitations Funding as Strength Parentsâ Emotional Journey 4.3.2 Between the Two Worlds While comparing the healthcare system of their home country and Canada, all the participants expressed how puzzling it is for them to decide which decisions might work best for their child. Once Aika passed the initial stages of searching for communities and information, her general experience with the service providers was positive. She believes the Japanese system is not supportive of parents of children with special needs and does not provide them with enough information or emotional support. âBut the newborn, that time was very difficult because we didn't have information, and also they werenât people, there werenât people that who gives us information.â The way people view children with special needs in Japan is with stigma, while in 99 Canada, she had a different experience where people smiled at her child, and she found it supportive and heart-warming. However, the family found the notable differences between the treatment process in Japan and Canada confusing. âWhat the doctor says here and also in Japan is a little bit differentâ¦ So this point I'm still don't know which to follow.â She stated that when discussing how she finds it hard to decide which system works out best for her child. Pooja had a similar experience where the differences between the healthcare systems in the United States and Canada created confusion and frustration for them. In the States, children with special needs would see a pediatrician and go on the waitlist to be assessed, but while they are on the waitlist, they start getting SLP services through government funds, and donât have to wait to get an assessment. However, in Canada, Vihaan had to get officially diagnosed before they could have access to funding. Discussing the funding in the States, Pooja said, âBut if you do have a diagnosis like autism, then you would just get more. You would just get more services. So, it's not like they give you an annual amount of funding, itâs whatever the child is, it's on a case-by-case basisâ. Pooja finds it more just to determine the amount of funding according to everyoneâs needs. Mei, too, is not satisfied with the IEP plans as she finds them not aligned with Liâs capabilities. She doesnât feel included in the planning. On the other hand, Liâs Behaviour Interventionist in Canada is from Hong Kong and having a similar cultural background made Mei feel understood. This indicates the importance of cultural compatibility while working with newcomers. âSo that we have the same culture background, maybe we share the same view of yes, we share the same view, yeah, uh, for the guidance of the children, yeah.â 100 Three of the participants referred to the educational setting in their home country as stressful and strict, and more focused on acquiring academic skills rather than focusing on childrenâs individual needs. However, these systems have an undeniable impact on the parentsâ perceptions and expectations of Canadian educational settings and what they hope their children to achieve. Aika had a positive experience in Canada since the education system in Japan was disheartening when the daycare that Minatoâs other siblings went to refused to enroll him because of his special needs. She experienced a lack of flexibility and that children with special needs are not welcomed in mainstream classes and often directed to specialized schools. However, in Canada, she had a positive experience and felt welcomed and supported. Educators respect each childâs individuality and focus more on Minatoâs strengths and welcome him with compassion and understanding. Similarly, Yun finds the Hung Kong education system different from Canada, which makes it hard to adjust. âSo, in there they have like intensive trainings, like on how to like listen. How to read everything they get to prepare before their elementary schoolâ. In Canada, Hao's speech and language support is primarily rooted in a play-based approach, while his family does not find this method particularly effective for him. Reflecting on their experience in Hong Kong, Yun notes that the educational and therapeutic practices there were more structured and teacher-directed. "Maybe in Hong Kong, the education system is more strict," Yun suggests, explaining that children were expected to follow instructions more rigidly, and Hao's speech therapy involved repetitive exercises that, while demanding, seemed to lead to clearer results. In contrast, Canadian programs prioritize freedom and enjoyment, which promotes a happier environment for children, but one that, in the family's view, may lack the intensity or discipline they believe 101 Hao needs to thrive. Yun believes being a little strict might help children with special needs develop. âLike if we don't force them, then they will always be behindâ. Her philosophy of education is influenced by the education system she was raised in Hong Kong, and which led her to believe in a more disciplined kind of behaviour and expectations; however, she agrees free education system like Canada provides the opportunity for children to make mistakes and learn from their mistakes. There is a blurry line where some parents find it hard to adjust to the new system, even though they agree it benefits their childâs development. Mei had a similar experience; she felt the education system in Hong Kong is focused on academic achievements and obeying the educators. Therefore, they were concerned about how Li would be treated as she required more flexibility. They are still facing cultural pressures from their Chinese neighbourhood and focus on academic success continues to shape their expectations. Mei believed Canadian second-grade academics were comparable to Hong Kongâs kindergarten level. âI don't really appreciate about that, but we can do nothing about itâ. This makes her feel helpless and disconnected. She feels a lack of autonomy in the decisions made for Li in the educational context. Mei reflects on the true meaning of inclusion and questions how it is practiced in Canada, as she believes inclusion doesnât merely mean having all children attend the same class and having education assistants keep special needs children safe, and there must be more targeted educational plans for special needs children tailored to their needs. This is not real inclusion. They need to strengthen their skill. But I thought that in Canada, this is the only inclusion, but not strengthening their skills. When I talk with the school resource teacher, they told me that you should strengthen her skills outside the schoolâ¦who is benefit from this kind of, yeah, system that is question for me. 102 Like Yun, another cultural difference that does not make sense to Mei is the extent of freedom children are given in Canadian classrooms: âfor the autistic student, they already not listening the instruction from parent or from teacher. However, they don't mind whether the kids follow the instruction or not because the culture is it's not obey, that's not obedience.â Mei is concerned about Liâs social skills âso that I even and my kids got problem in this area they don't think that this is a problem they just think that lots of students do like this as well they will grow after they grow up. Well, this will change.â However, she feels unheard as she thinks this is not taken seriously in her school. 4.3.3 Communication as a Bridge or Barrier While discussing communication, this study refers to the communication between parents and service providers in both healthcare sectors and the educational context in terms of the inclusion, as well as when and how it was done in an effective way or otherwise. Analysis of the five narratives demonstrated communication as both a connection point and vice versa; each is discussed regarding the participantsâ experiences. 4.3.3.1 Effective/Open Communication. Communication is what links parents to care providers. Effective communication can be provided in various forms, such as the availability of resources, keeping parents updated via email, meetings, and feedback notes. Aikaâs regular meeting with the speech language pathologist and educators at the daycare, where they discussed Minatoâs goals and progress, gave her a positive sense of involvement. This indicates how they feel involved and informed through this kind of communication, as Aika states: In zoom meeting with the teachers and also his speech therapist included so we all know what his challenge point is, and what his goal for now is and what he achieves 103 so far. And I can also say what he's focusing on now, so I think it's very good system that he gets individual goal setting in a preschool. She also praised the flexible, child-centred approach that encouraged multiple forms of communication, from speech and sign language to advanced tools like AAC devices for her son. This inclusivity stood in sharp contrast to the more rigid systems in their countries of origin, where communication options were limited or not encouraged. For Mei, strong communication with the Behaviour interventionist helped parents feel involved in the intervention planning. When Mei expressed concern about Liâs isolation during recess, the school added social integration as a goal in her IEP. Unlike the public schoolâs biannual reports, the EA at the private school provided weekly email updates, reassuring Mei that Li was receiving focused educational and social support. This indicates the significance of communication and connection with caregivers in an ongoing manner to have them feel engaged and included in their childâs progress. In Millaâs case availability of resources, teachers, and the parentsâ committee gave the parents a sense of safety and trust. Before Mateo started kindergarten, his parents had an interview with the school service providers, a general advocate, where they discussed their challenges and expectations. She adds, âKnowing there will be education assistants who are trained to work with special needs children, and your child is in a supported space, is reassuring.â She appreciated multiple ways that the school stayed in touch with them, âThis kind of interaction, we are happyâ. Poojaâs experience with the Behaviour interventionist also indicates the importance of keeping parents informed, as they receive monthly reports on Vihaanâs progress. Pooja meets the BCBA every three months, âso I am happy with the involvement, like my involvement with that centerâ. Pooja is delighted with the teacherâs communication, which gives her peace, and they 104 also get to communicate via email. Giving regular feedback and a progress report is a beneficial way to communicate with parents. Poojaâs remark on their lack of knowledge indicates the significance of transparent, ongoing communication: âIâve never been to school here. I didn't know what the policies are. So that's another issue, like not knowing what services I'm entitled to.â Yun admires the service providerâs open, strong communication. In their case, communication with the daycare was done either via email or an end-of-day chat with the educators to discuss Haoâs behaviour issues and suggest recommendations. Communication with the school has been consistently strong. Each day, they receive thoughtful notes on the communication board from Haoâs teacher, offering suggestions, addressing any challenges that have arisen, and sharing helpful insights. This ongoing dialogue has been a valuable source of guidance and support for the family. Effective communication leads to a sense of involvement that empowers and includes parents in their childâs journey as they are striving to assist their children in their growth. It bridges the gap that parents feel as they are trying to figure out what works best. 4.3.3.2 Lack of Communication. The narratives revealed that a communication gap can lead to frustration and a lack of trust in parents. Milla and Yunâs cases are an indicator of how the absence of effective communication can lead to parents feeling overlooked and excluded. Milla was the one who asked the daycare for a meeting after eight months, as their son was going to the daycare. She says, âBut they don't give you like a follow a real follow-up of your son.â They are introduced to an organization in the meeting; however, the parents were unsure how to proceed, so they emailed the manager to ask for the organization's name to be spelled out clearly, as verbal information was not sufficient for them, especially when they were just informed their 105 child might have autism. The daycare gives parents shocking news and verbal information while they are already overwhelmed and at a stage when a lot of things are confusing or unknown to them. This signifies the importance of offering information in various formats and being mindful of parentsâ emotional state while deciding the means of communication. Yunâs experience with the daycare during meetings, when they had tough conversations, confused them as the verbal promises didnât align with their later decisions and actions Itâs like strange that when I face-to-face talk to the in charge and confirm with the planning, the e-mail is always telling a different storyâ¦ Clearly, I have stated myself really clearly, confirmed several times and also told them that my BC and my support worker all think that way, and then she'll say OK, OK. We can do that, we can do that, but in the e-mail, it's just another story. This communication gap leaves them feeling confused and impacts their vision of service providers as less reliable. While communicating with parents, itâs significant to consider their mental state, the context of what they are going through, and employing various means of conversation depending on the cultural background of the family. Another significant aspect that was common across the narratives was the role of language as a means of communication. Milla describes their connection to school via email as a tool that is easier to convey and understand, meaning âAs we have an accent, a lot of people have an accent, and a lot of people are from different countries. And not everyone is open to the effort to understand the other part in general in the process.â In general, she is not a shy person and is a strong advocate; however, at the beginning, it was hard for her to communicate as she wasnât accustomed to thinking and expressing herself in English and wasnât comfortable 106 communicating, but after socializing with people and feeling the need to advocate for her son, she got more confident. Another factor that impacts parentsâ understanding and processing information is the intensity and amount of information being conveyed to them. For instance, Aika states, âMaybe that's because my English understanding, or maybe I get a lot of information so that which one is, I didn't know which one is the important information.â Aika first received interpreter services at an Audiology Center in Vancouver, where she was offered a Japanese interpreter during Minatoâs hearing device fitting. It was a positive experience, and she now knows she can access interpreter support whenever needed. But not all participantsâ experiences were positive. During Millaâs first appointment with the family doctor, she struggled to understand what the doctor was saying, and he told her she needed to learn English. The way it was communicated felt cruel to her, even though she acknowledges that knowing English would make things easier. What hurt most was that it was an intake session, and she was already stressed about whether the doctor would accept them. âSo everything is stress here, that's the problem. It's not that you can relax and smooth and you know.â Other participants of the study either spoke English or asked their partners to translate for them and didnât refer to language issues as a barrier. 4.3.4 Healthcare Navigation 4.3.4.1 Confusion Among New Users of Services. For newcomer families, figuring out the system of the country they move to is a big challenge, as everything is unknown to them. All the families in this study referred to this as a confusing and stressful process. For instance, Aika stated, âyou know that when we moved, we don't have any information like we didn't know about the place and it wasn't, so I think the most hardest point before we move and also after we 107 move is about my youngest son.â Lack of information and the transition is referred to as the most difficult points in their journey. Pooja has an exact similar experience where she states, âI want to share the fact that it's very difficult for parents even to be informed about what the next step should be.â This exemplifies the kind of burden a lack of prior knowledge imposes on parents and how important it is for the service providers to be mindful of these factors. This lack of information leads to various difficulties for instance, sometimes families to missed opportunities or made decisions where had they known their options they would decide differently. For example, Aika had to wait for months to get an appointment with an ear and nose specialist when Minato had an ear infection, while the family did not know they could go to the emergency in such cases and didnât know the wait for a specialist would take that long. Milla had the same experience, which caused a delay in her sonâs diagnosis. Pooja thinks, If I weren't familiar with the diagnosis, and I didn't speak English, probably he wouldn't get much help. He would probably be on wait waitlist. As a matter of fact, he wouldn't even get diagnosed. I would be waiting on a wait list for two years, which is terrible because now you're just wasting crucial time. In Meiâs case, her confusion about service fees and how they differ made it challenging for her to decide which one to choose. This highlights the importance of timely and transparent information availability. Three of the participants referred to building a team as the most confusing, frustrating stage after their child was diagnosed with autism. Milla refers to this tension: â So, as soon you have the assessment, they say we can't help you anymore.â The idea of figuring out what the next steps are when one is already emotionally overwhelmed with the diagnosis is stressful for families. Pooja experienced the same lack of support: 108 It's like I had to do all the questioning. No one went through everything with me. I even called the autism support services, and I was told that I would have to find a provider on my own and BI on my ownâ¦So it was very tough to navigate. Yeah. And it's very stressful, especially when you're a parent who gets a diagnosis. It's very tough, and itâs emotionally overwhelming, and then to navigate the system. Similarly, Yun indicated that the information provided for families is limited, and there is no one to assist them. They feel like they are on their own. âIt's very difficult to find a suitable service for your kids. Yeah, it's really, really difficult.â Most parents agree that a lack of transparency in terms of available services makes their journey harder and more confusing. 4.3.4.2 System Limitations Participantsâ narratives illustrated how systemic limitations in healthcare and education consistently delayed timely and equitable access to services. One of the most common barriers across narratives was long waitlists and the complications they caused for families and their children. Families like Meiâs, Millaâs, and Poojaâs described delays of several months to over a year for essential therapies, assessments, and daycare placements. These delays often happen during childrenâs critical developmental windows, leaving parents anxious about losing vital time for early intervention. Pooja elaborates on why they chose private assessment, saying, âI would be waiting on a wait list for two years, which is terrible because now you're just wasting crucial time to get a diagnosis right, that time could be used with them for therapy.â Participants agreed that even available services lacked transparency and clarity. Yunâs experience navigating over 1,000 listed programs, without guidance on quality or cost, shows how families were left to navigate a complicated pool of services mainly through trial and error. Lack of upfront information about service fees added to their frustration, requiring parents to 109 contact multiple providers individually and compare the information. âIt's a really painful process, and you have to go through that,â says Yun. Strict policies and a lack of flexibility also created additional challenges. Some daycare and school programs had strict regulations, such as requiring Behaviour Interventionists during routine activities, despite the childâs ability to manage independently. For example, Yun had to call multiple times and ask for meetings to be able to secure even the slightest adjustments for Hao, which shows the energy and effort parents must invest to be heard within the system. Yun exclaims: They were quite strict regarding the schedule. Like he they do think that he misses lots of support. That's why if the BI is not there, he can't go to school. He cannot go to school if the BI is not there. Yeah, but of course I fight for that and so at the end of the school year, actually, he has one day that he does not have any BI supporting him. That's why I fight for that, and so when we were close to school year, he was able to, like, stay until 2 instead of 12:30 and he was able to have one day that is without BI. Referring to the process of convincing the preschool that her son can stay longer hours without a BI as a fight indicates the severity of the situation and the difficult time she had; however, it also proves her non-compliant nature and persistence. For many families, these limitations lead to imposed critical decision-making. For instance, Mei had to move her daughter to a private school because she wasnât satisfied with the support provided at public schools, which caused her financial strains and added an extra layer of effort. All together, these narratives indicate how system limitations can come in different forms, such as a lack of transparency, long waitlists, strict policies, and inconsistent service 110 provision. This can, in turn, lead to significant stress and inequity for newcomer families who are managing the demands of advocating for a child with special needs in a new country. 4.3.4.3 Strengths of the Healthcare System. Despite challenges of navigating the system, there were aspects of Canadaâs healthcare system that supported newcomer childrenâs growth and reduced family stress. Aikaâs experience is a good example of the accessibility of specialized resources. Having Minatoâs medical documents pre-registered before arrival allowed for a smooth transition to the provincial hospital, which even provided them with a loaned CPAP machine, which was crucial for him at the time. As Aika reflected, âtheir mindset is very supportive and positive, and it helps a lot the family.â Parents appreciated free or low-cost early intervention services such as occupational therapy, speech-language pathology, and parent-preparation programs like those offered by a Down Syndrome foundation. In addition, parents experienced healthcare supports that simplified complicated decision-making makings such as Poojaâs centre-based intervention services, which took away the need to coordinate her own behaviour intervention team, and reduced parentsâ emotional burdens. Yun points out the value of collaborative relationships with service providers. Open communication and careful consideration of school reports lead them to trust the system more. These positive experiences show that, when accessible, Canadaâs healthcare system could offer a holistic, respectful, and empowering model of support for newcomer families. 4.3.5 Parents as Persistent Advocates and Decision Makers A recurring theme across all narratives was parentsâ relentless persistence throughout their childâs journey, starting before they begin their journey to move to Canada, making plans ahead of time and predicting their childâs needs, searching for information, and exploring their 111 options. This stems from their trust in the childâs strengths as well as their responsibility to provide the best environment for their growth in a nurturing environment. Considering all the factorâs Liâs family decide to move to Canada as Mei shares their informed decision: We planned to immigrate to Canada after our child born. Actually, there are two reasons to immigrant to Canada the first one is the political problem in Hong Kong. The second one is she got some diagnosis we think we thought that, uh, maybe Canada can give her more space to growth because of our own country is a little bit high pressure in studying. The parentsâ strength-based lens is evident when they share their childâs capabilities and believe they have the potential to build on their strengths. Pooja portrays Vihaan as a cheerful boy, âVihaan's always happy anywhere he goes, he's happy. His concern is making friends and being around his peers and playing.â While talking about their children, all five participants took pride in sharing what they are capable of as well as their potential. Milla refers to her son as someone with exceptional musical talents, âHeâs very musical. He loves music. He loves singing. He loves dancing. He has good rhythm since he was a babyâ¦so he started piano, and he got engaged with piano, the teacher found that he has good memory. Good ear and rhythm, and he's very engaged there.â 4.3.5.1 Self-Education. Participants collectively felt the need to educate themselves about the process of diagnosis, the services their child is entitled to, and what their childâs diagnosis means for their development, and even ways to support and cure their child. Aika searched for information on the internet and started trying to connect with communities of parents who have children with special needs. Milla started reading and studying autism research 112 to understand her son better and be the best advocate she can be. Yunâs statement is an indication of their family's efforts to explore services Hao would need: We did find him some resources in Hong Kong and we also like look up for some resources for when we moved to Canada, like what do we have to prepare, yeah so that's why we did get some more information from people sharing on the Web, people sharing in WhatsApp groups saying like if he has to get diagnosed for autism, like what kinds of documentation that we have to bring to Canada in order to make the government recognize his diagnosis. What drives parents in this sense can differ depending on their context, when they moved to Canada, and where their child was diagnosed, but what is common is their unwavering determination. Sometimes their lack of trust in the system drove them to dig deeper, for instance, in Millaâs case, she sensed the pediatrician is not paying enough attention to Mateoâs symptoms and treatment, âAnd my pediatrician refused to do any researchâ. In Aikaâs case, fear of the unknown system and concern about her sonâs needs drove her to search for information. âBut before we come to Canada our, we worried about my youngest son with Down syndrome because he often goes to see doctors, and we worry about if he has enough like support in Canada, because it's we can think it's so different and we never lived in outside of Japan with kidsâ. 4.3.5.2 Forward Thinking. Upon moving to a new country, one has to predict and make plans according to their circumstances. Having a child with special needs adds another layer of effort to this already challenging path. Participants of the current study came to Canada at different stages of their childâs diagnosis, and depending on that, they made plans beforehand. Poojaâs son was born in Canada, and in her case, she demonstrated forward thinking in how she 113 observed her sonâs behaviour and kept insisting on having him diagnosed. She also touched upon how she predicted that if he has a diagnosis, itâs best to apply for funding and start treatment earlier. In the other four participantsâ cases, their children were diagnosed or were in the process of diagnosis in their home country, and they started connecting with communities, centres and making plans before moving to Canada. Before moving to Canada, Aika contacted a Down syndrome foundation and the provincial hospital, which provided them with some significant information. They were registered and accepted to the department of the respiratory clinic before coming. In Yunâs story, they decided to move to Canada as their research proved it to be a better choice considering their sonâs special needs âFor Canada, the education system I think is more free and less stress, and that's why eventually we choose Canada.â They contacted a childrenâs hearing centre before moving to Canada to put him on a waitlist, so by the time they move to Canada, he will start daycare. To avoid the wait to apply for autism funding, they paid out of pocket to speed up the process and visit a psychologist who could confirm their documents from Hong Kong and give an official diagnosis. Within a month of their arrival, they were able to get the documents signed and confirmed. In Meiâs case, when Li was diagnosed with ADHD, her parents decided to move to Canada so that their child could grow in an educationally stress-free environment. Before moving to Canada, the parents ensured they had an official assessment that met international standards in English to facilitate access to services in Canada. This indicates how parents develop their strategic planning skills to be able to support their children in the best way possible. 4.3.5.3 Taking Initiatives. Parentsâ timely initiative, in most cases, is what helped them get the treatment in time or even get their child diagnosed. When Liâs family moved to Canada, Mei persistently called over 114 120 service providers until she found one who could approve the documents promptly and at a reasonable cost. Had she not done that, they would have had to wait for public assessment for around three years. Milla started observing behavioural changes in her son. Concerned with what they observed, they took initiative and decided it was time to meet with the daycare manager. Determined to get help, Milla called every center on the list and started looking into private clinics. She believed the sooner Mateo was assessed, the sooner they could start treatment and access the much-needed funding. âIt's a matter of time. It's a matter of patient is a matter of money, but it's better if you pay because you access to the funding earlier.â She wonders what would happen if the parents didnât ask for that meeting. âIt was that when we asked for a meeting to know what's going on, how is he, then he suggested. When for me, it's like the daycare should tell you something before. So, I was wondering if we never ask for a meeting. What's going on?â. Pooja insisted that her son needs a diagnosis; she often reflects on how much of Vihaanâs support has only come through her relentless advocacy. She has had to push her way through countless meetings, emails, and system barriers to ensure he receives even the most basic services. Itâs a constant effort, one she willingly takes for her sonâs well-being. 4.3.6 Financial Factors 4.3.6.1 Funding Limitations. Families reported restrictions in the process of applying, qualifying, and using the funding. Aikaâs family did not qualify for certain Down syndrome subsidies because their income exceeded program limits, âbut we are family of five. So that time it was not possible for us to pay for these private services.â This shows the importance of taking all factors into consideration while determining the qualifications for funding, rather than focusing on income calculation. There must be a balance between the costs of a facility, depending on the familiesâ circumstances and their income. Milla had the same experience: âThe 115 thing is, the economy here is crazy.â Even though her husband earned a good salary, and she had been working a minimum-wage job the year before, they still didnât qualify for the kind of financial support that might have eased their financial situation. She also points out the lack of transparency and says, âYou don't know if you're paying too much or too low.â Three of the participants expressed concerns regarding the reduction of autism funding when children start first grade, which causes them to stop using some of the much-needed services, while they are not offered alternatives to them. Mei had to cancel Liâs Behavioural Consultant and Behaviour Intervention services. Milla and Pooja have mixed feelings and donât know how things will change with the reduction of funding. Pooja shares her concern, âRight now, with the 22,000, all he gets is 2 days a week, and he only gets two hours each session, and then I have my own BI over the weekend, which I pay out of pocket. âReflecting on next year when the funds decreaseâ, Yun expresses, âI don't know. I don't know, to be honest,â the future seems unclear to them. Parents like Yun and Pooja expressed anxiety about how they would maintain essential services, such as speech therapy and behavioural intervention, once school-based supports take over a portion of the funding. They fear that school-based services might not match the intensity or specialization of private providers, leaving children at risk of regression. While Canadaâs autism funding and early intervention resources are equitable supports; however, newcomer parents consistently faced significant financial barriers that impacted their timely access to services. The $22,000 annual autism funding in the preschool years was considered essential by families, yet they expressed that it did not cover the span of interventions recommended by professionals. Another issue brought up by these parents is how the costs of therapies are increasing, but the funding has remained the same since 2001, which causes families to not be able to use some 116 of the services. Yun stated, âSo you're jumping around and like you don't want to jump around, but when you have to, like your funding, like run out really fast.â Lack of enough funding sometimes causes families to feel trapped in the system. As changing to a different family doctor or service provider requires upfront cost, even when families are not satisfied with a service provider, they feel stuck and have no choice but to carry on. For instance, Milla expressed âProfessionals are trying to take in advantage from the people and you're like a prisonerâ¦that's the point that you don't have choices. Our medical system is open; here, the medical system is closed. You can go, you can pay ten consultations from different doctors if you want.â She referred to the healthcare system in Argentina and how she found it convenient in terms of having the choice to decide which service provider works best according to the needs of their child. While in Canada, Assessments often cost $1,000 or more, and every change in service provider requires a new assessment fee. They expressed being caught in a situation where they had to either stay with a service that wasnât a good fit to avoid paying another assessment fee or take on financial strain to change providers. 4.3.6.2 Funding as Strength. While financial limitations were prominent, parents of children with ASD also showed deep gratitude for the availability of funding programs that provided support for their children. For Hao, Vihaan, and Mateo, the $22,000 annual autism funding provided during the preschool years made it possible to access multiple therapies that targeted their specific needs during developmentally sensitive years. Yun, for example, stressed that this support allowed her son to receive services she believed were vital for his progress. âI think like it's like really early that we got the funding approved. Yeah, and with the funding, we can afford to have a support personâ. 117 Pooja also expressed feeling blessed that her sonâs private assessment was covered by a charitable fund, which saved her from long public waitlists, and he got to begin interventions without delay. âSo this one's here in Canada that I found was â¦children's funding from the charity. It's a charity that will help who can't afford private assessmentsâ¦So they'll allow you to fill out a form, and depending on how much you're making, they will fund your private assessment. Thatâs a great charityâ. For Aika and Milla, the funding not only provided the opportunity to start vital therapies for their children but also gave them a sense of validation that their childrenâs needs were regarded by the system. Regardless of the reduction of funding to $6,000 in the school year, parents still acknowledged the governmentâs effort to sustain some level of support beyond kindergarten. Milla noted that while the decrease in funding would need adjustments, she believed âthe government is doing its best to support families like mine.â 4.3.7 Parentsâ Emotional Journey Within participantsâ narratives, newcomer parents described the emotional journey following their childâs diagnosis as a journey of shock, isolation, grief, and gradual acceptance. The early period was often the hardest, with emotions escalated by uncertainty, lack of guidance and knowledge, fear, and in some cases, such as Aika, the physical separation that the medical procedures or pandemic restrictions compelled on the parents. Aika refers to the time her son was born as âmost hardest timeâ. For all the participants, the diagnosis itself was an emotional shock. Mei and Milla both described the shock of hearing the words âautismâ or âADHDâ as their childâs diagnosis for the first time, even though concerns had been raised before the official diagnosis; they still found it hard to believe. Milla stated that receiving a huge diagnostic report felt like âa lot of trauma and 118 a lot of loneliness,â indicating the significance of the format of information delivery and its impact on parentsâ emotional state. Several parents, like Pooja, emphasized the need for emotional support and its significance, especially during the first couple of months after the diagnosis. Being provided with pamphlets or lists of resources and websites felt insufficient in the face of overwhelming emotions. âAt that point you're so overwhelmedâ¦you just want a human being to sit and tell you these are your next steps,â she explained. Her longing for connection, through parent-to-parent groups, reflects how this aspect is not taken into consideration the way it deserves. Pooja stressed, âIt was just really tough because I mean, no parent wants anything to be wrong with their child, right? And of course, that denial phase too. And then just to accept the fact that he has autism took a very long time.â As time passed, parents gradually moved toward acceptance and empowerment, to find ways to support their child, yet their emotional journeys remained ongoing. During this time, they had to go through feeling guilty, questioning their choices, and self-trust, which was a painful process; however, they each found their way to fight these feelings. Pooja described shifting from feeling judged as a âbad momâ to cherishing her sonâs uniqueness. Even in moments of acceptance, however, uncertainty about the future lingered. âI am worried because I donât know how things are going to turn out,â she admitted, reflecting a shared concern among parents about what supports would look like as their children aged. Parental guilt is also evident in Yunâs narrative when she blames herself for assuming her childâs lack of eye contact is related to his hearing, and it didnât occur to her that it could be something else. This illustrates the essence of parentsâ emotional journey and how it is not a linear process but rather an ever-evolving one as they encounter new stages of advocating for their 119 children. While resilience and strength develop over time, the narratives clearly reveal that emotional support is vital for newcomer families adjusting to life with a child with special needs, especially in a new context. Across participantsâ narratives, informal and formal support networks were present to help newcomers navigate the complex healthcare and education systems. These can be grouped into two resources: first, official resources such as therapists, NGOs, and autism foundations, which provide structured information. For instance, Mei states, âI attend some NGO'sâ¦They organize some meetings for special needs parents so that when I communicate with those parents, I got this kind of informationâ. Second was peer networks and cultural communities as reliable sources of guidance, emotional support, and practical help. Milla refers to a friend who has an autistic child, saying, âShe will tell you everything she knows. It's beautiful.â For Aika, connecting with a Japanese community of parents raising children with Down syndrome and hearing loss provided both information and a sense of belonging. That was how she learned about a family services organization, and even found a pediatrician through a personal connection without having to go on a wait list. âSo, we were so lucky that my son could find a like pediatrician, and she follows up very well.â. Regular meetups, playdates with children from their community, and gardening in a local community garden gave her emotional support. She found speaking with others who had navigated similar challenges was more helpful than many official sources of information, especially during the early months same as with other parents. Mei also found strength and insight through her Chinese community connections. Support groups, counselling sessions, and peer exchanges helped her process the diagnosis emotionally, while also offering the route to new resources. 120 Similarly, for Milla, social media groups and peer friendships became a helpful, supportive space for sharing resources and motivation where she got to reciprocate strategies with other parents online and through personal friendships. These shared experiences and interactions provided her with emotional and practical support. Holistic therapy, counselling, prayer, and open conversations with her husband further strengthened her. Poojaâs initial emotional state was formed by the support of her family and close friends, who provided understanding and encouragement during a vulnerable time; however, she would prefer to communicate with other parents who are going through the same process. She also found trust in Vihaanâs Behaviour interventionist, which further supported her emotional state. Yunâs journey demonstrates the strategic value of networks. She reached out to autism and hearing loss communities upon arrival, which provided immediate guidance on services, funding processes, and resources. WhatsApp groups of families from Hong Kong also became her go-to source to ask questions and access up-to-date information. She described community support as having a âstrong positive impactâ on her journey, offering both emotional comfort and real-life navigation strategies. Across the narratives, the common factor of these experiences is that support networks in their various forms act as essential navigational tools. This demonstrates the power of a community of support and how it elevates these parents both emotionally and in terms of finding timely information and resources, easing their experience. 4.4 Summary This chapter focused on the representation of the findings in two stages, namely, restorying and thematic cross-narrative analysis of the data. Each participantâs interview transcripts were first coded using a problem solution approach and restoried. Then I conducted a 121 cross-narrative thematic analysis across the five stories to explore the challenges newcomer parents face and ways they approach these challenges. What they bring to the context and how involved they see themselves in their childâs education and healthcare decisions. 122 Chapter 5: Discussion 5.1 Overview This chapter discusses the findings of the current study, followed by an exploration of the strengths and limitations. In this study, the researcher sought to explore the experiences of newcomer parents navigating the education and healthcare system in Canada. Informed by the research questions, I investigated their experiences to examine parentsâ engagement in their childâs diagnosis journey, exploring resources and the education systemâs systemic barriers and supports that influenced involvement in this journey, and the cultural values that shaped these experiences. In addition, the practices and parental suggestions that can help inform service providers to view caregivers as capable partners and help smooth the care transition journey for them and their children are discussed. This is followed by a discussion of the studyâs strengths and limitations, leading to recommended implications for further studies based on the results from this study and my review of the literature. 5.2 Discussion of the Findings 5.2.1 Navigation Experiences The first question this study explored was the experiences of newcomer parents of young children with special needs navigating support services in schools and the healthcare system. I intentionally chose this broader question to allow the participants to share what they experienced in terms of navigating various services and not lead them toward a specific experience to find out what stands out and matters to them. Coping with the news that your child has been diagnosed with a special need, and the journey one has to go through to advocate and support their child, is a significant part of the participantâs emotional journey. There were times when they all felt lonely, not heard, 123 overwhelmed and lost. However, all the participants in this study had their own coping strategies, including friends, community support, family, partner, psychologist, gardening, religion, and assisting other families going through a similar path. They found fulfillment in knowing they are doing their best consistent with the work of Son et al. (2018) on aspects of the immigrant experience, such as feelings of isolation and increased reliance on more culturally assimilated family members, which contributed to the difficulties some parents experienced while navigating a complex system. These issues were also exacerbated by their lack of knowledge of a system that drastically differed from the system in their home country. Community-based solutions were regularly used to address these specific navigational problems. These connections throughout the community provided parents with crucial emotional support and understanding while also assisting them in learning how to navigate the system. Navigating a new healthcare and education system while having to take care of a child who is recently diagnosed with a special need and is in a sensitive developmental stage is something all parents in this study referred to as a challenging, time-consuming process. Khanlou et al. (2015) participants expressed difficulty adjusting to a different culture, integrated with the responsibility for caring for children with a developmental disability, which makes the navigation process harder. Sohn and Wangâs (2006) participants stated that regardless of how long they had lived in America, communication with teachers and taking part in school activities were both hampered by language barriers. Many acknowledged that speaking English with teachers was a challenge. Mothers in Lee and Parkâs (2016) study perceived that difficulties in fulfilling their children's requirements were influenced by their lack of knowledge of the US educational system and the procedures in special education programmes that appeared to be challenging. This caused all the participants in the current study to feel frustrated and distressed 124 at some point in their journey. Long waitlists and complicated paperwork led to difficulty navigating the healthcare system for mothers in Khanlou et al. (2017)âs study, which led to losing access to vital funding opportunities and important services such as therapies, respite care, and social support programs. Consistent with Khanlou et al. (2017), participants in this study all had to experience long waitlists both for getting their child into daycare and for the healthcare services, which ultimately caused a great number of challenges for them. Limited access to healthcare information was something that impacted all the participantsâ decision-making and their childrenâs treatment processes massively, and sometimes caused them to miss opportunities or find access when it was too late. In most cases they were provided with websites that consisted of a hundred of service options with limited information as to the pricing and availability, or reviews, which caused them additional effort in having to call tens of service providers to be able to find the right fit for their family and even then they were not sure if it will work out for their child and if not how to find or change the service providers. Durbin et al. (2021) highlight that limited access to health information may cause delays in seeking and obtaining timely care, which might have negative effects in the process of seeking help. Twenty-five percent % of the families in a study by Hughes et al. (2002) indicated that it took a long time to get their child into the right programme and that they hadn't seen any improvement in the previous 12 months. Advocacy is a skill that all the participants built through the journey of navigation and over time. Cummings and Hardinâs (2017) participants characterized themselves as actively engaged in promoting their child's development within the home environment while noticing a comparatively less active role in educational or medical contexts. All parents in this study displayed dedicated endeavours in seeking out services for their children, and a significant 125 number consistently attended multiple meetings and appointments to promote their children's advancement. However, all the participants of the current study referred to this process as something they had to fight for, which indicates the intensity of their experience consistent with the work of Blackwell & Rossetti (2014) reporting many parent claim they experience stress during IEP meetings, don't feel like equal partners and respected members of the team, and think they must battle the school to get the services they want for their kids. 5.2.2 Involvement The second question this study addressed was how newcomer parents of young children with special needs are involved in their childâs education and healthcare processes. This study revealed that one of the factors that impacts parentsâ involvement in their childrenâs treatment process and education plans is effective communication that ties back to cultural competency. Itâs important to pay attention to how involvement is defined across cultures. For instance, in Aikaâs case, the family felt more at peace if the doctor made the decision and gave them a choice of wanting to undergo the surgery or not, not only gave them a sense of involvement but it also made them feel pressure and fear of making the wrong decision, as in Japan, itâs the doctor making those kinds of decisions. This is supportive of the findings from John and Benderâs (2018) study, where the American medical community's preference for individual decision-making contrasts notably with the authoritarian style to which these mothers are used. All the other participants of the current study had the same experience, and at some point, they were put in a position where they had to make difficult decisions without having enough information and background knowledge. Park et al. (2001) where participants indicated a lack of fundamental comprehension of special education or other available support services. Four other participants exhibited slightly higher levels of knowledge compared to the other three parents, 126 yet their understanding remained limited. It was evident that these parents had limited background knowledge necessary to comprehend the dynamics of collaborating with professionals in the new context. None of these parents could assess the quality of their engagement, as their lack of basic information about service delivery and their parental rights prevented them from doing so. Thus, it is important to consider cultural background knowledge, language and situational factors while involving families in decision-making and not limit involvement to merely giving them choices without providing enough information. When exploring parental involvement in the education decisions and processes, all the participants at some point felt lost and in need of support. However, after a while, they all found their way either to the extent that they changed their childâs daycare or school, or they got familiar with the services provided and decided to keep their child in the same school. What stood out was that once they felt involved, they stated trusting the system. Sohn and Wangâs (2006) found that involvement of the parents in their children's education raised their own self-esteem, helped them feel at ease in school, helped them adjust to the American educational system, and even helped their children succeed in school, in line with the present study. Mothers found it difficult to see themselves as partners with the teachers. This ties back to self-determination theory, where Deci and Ryan (2000) state that fulfillment of autonomy as one of the three psychological needs can lead to overall well-being. Consistent with the work for Hughes et al.âs (2002) work, three of the participants saw their involvement in their childâs treatment plans and in relation to school and daycare as positive due to consistent updates, progress reports, and having a voice. This illustrates the role of engaging families consistently and how it impacts their sense of involvement. 127 On the other hand, two of the participants expressed frustration in how they were merely informed of their childâs general state without being asked to be involved in education plans at schools and how, when they even made suggestions, their voice was not taken seriously. They had the same experience with the healthcare providers, where one of them was even told not to read too much about their childâs condition, and the doctor was not opening the path for any involvement from the parentsâ side. The same issue is discussed by Lai and Vadeboncoeur (2013), where the six parents in their study experienced with the teachers was unidirectional. They perceived their roles as seeing and hearing, or more simply, as receiving information. The participants subtly noticed an imbalance in the partnership. Nevertheless, all parents in the study showed enthusiasm and striving towards making positive connections with the service providers despite all the challenges. Similarly, parents in Rossetti et al. (2020) frequently saw striving towards better teamwork as a difficult but vital endeavour. Consequently, once parents feel involved, their sense of competence and autonomy is boosted. According to Ryan & Deci (2016; 2017), supporting autonomy as a contextual component is crucial in most circumstances because it enables people to actively meet all of their needs and gravitate toward and use optimal methods to fulfill each fundamental need 5.2.3 Cultural Values The third research question that guided this study asked what cultural values impacted parentsâ experience with the new systems. Results illustrate that cultural perspectives shaped how parents explored and navigated the services, perceived their childâs diagnosis, engaged in the decision-making processes, and their expectations of the education system. For instance, parentsâ values around academic achievement, their expectations of what skills their child can acquire and 128 how much it is fulfilled, and if inclusion is implemented in its true essence was influenced by their own educational background and what they experienced in their countries, which in turn impacted their preferences for specific educational settings and the extent they felt satisfied with the services provided. This ties to John and Benderâs (2018) study, where the participants pointed out how the difference between their upbringing and the setting where they were receiving assistance for their children is proven to affect their interactions with the educators. Yun, Mei, and Milla all felt their childâs educational needs and capabilities were not being met, consistent with findings from Hughes et al.âs (2002) study, where one-third of the participants believed the educational program, they were assigned didnât meet their childâs needs. Service providers agree that more time should be spent getting to know immigrant families' settings and histories, as well as their experiences and perspectives on healthcare (King, 2011) 5.2.3.1 Cultural Familiarity. Cultural familiarity also influenced which service providers parents sought out. Mei who was able to find service providers from the same culture, felt more understood, while Milla had the opposite experience, and did not feel informed of their childâs progress regularly and didnât feel informed. This aligns with findings by Lindsay et al. (2014), who reported that linguistic and cultural competency enhances communication between the two parties. Yun stated that the service providers regularly kept the family informed, offering timely updates, practical suggestions, and relevant resources. Parents in the study by Son et al. (2018) stated they experienced cultural differences in services and expressed better experiences when professionals showed cultural competency. Millaâs doctor told her there is no cure for your child, and you read too much, which caused her to lose heart and trust in the doctor. Khanlou et al. (2017) report that the perceived support provided was unreliable and untimely, largely due to the lack of culturally competent and linguistically appropriate services. 129 The families in Woodgate et al. (2017) expressed frustration in understanding Westernized treatment philosophies and felt that the healthcare providers failed to understand them. Three of the participants in the current study talked about the services that were provided in their home country, which worked for their children, while they were not available in Canada, which caused them to worry about their childrenâs treatment. Mei was frustrated with untailored support in public schools and felt meetings with the social workers were not productive. Milla had a similar experience with the daycare her child went to, feeling the way they were treated was inappropriate. Participants expressed a greater sense of trust and involvement when they experienced understanding from the service providers and felt distanced and worried when the connection with the service providers was lost. What enhanced these interactions in all five participants was the cultural competency of the service providers. This is consistent with Jegatheesanâs (2009) study, which illustrated that mothers believed that to create a respectful and trustworthy connection, professionals must be aware of these cultural differences. Service or care providers must have a sensitive understanding and appreciation of cultural variety to provide early childhood developmentally appropriate, inclusive, and meaningful care (Brown et al.,2020). 5.2.3.2 Communication. Cultural background and values played a significant role in the communication between the participants and the service providers. Effective communication is not necessarily achieved through language knowledge or the presence of interpreters; it goes beyond that and is rooted in culture. Park and Turnbull (2001) point out the same issue by expressing how they require assistance that goes beyond mere language interpretation to fully understand professionalsâ suggestions and the terms they use. However, this is not to say that interpretation services donât play a significant role in assisting families, as Aika first received 130 interpreter services at the Community Audiology Center in Vancouver and found it a positive experience. Milla and Yunâs cases are an indicator of how the absence of effective communication can lead to parents feeling overlooked and excluded. Milla shared how the daycare didnât reach out to them, and they were informed their child might need assistance after eight months and only after they asked for a meeting and initiated the conversation. They still experienced communication gaps as the daycare gave them verbal information on where to reach out, while a written format could be more effective, especially when they had just heard their child might have autism, consistent with Son et al. (2018), where the communication gap led to misinterpretation, which in turn caused the missing of some possibilities. It shows the significance of the means of communication and the importance of choosing the best format or offering information in various forms. Similarly, Park et al. (2001) state that strong communication between parents and professionals could be hindered by factors such as language barriers and cultural differences in conversational style. Rossetti et al. (2020) participants also experienced restricted access to essential information due to language issues. In Khanlou et al.âs (2015) study, many of the participants did not speak English as a first language, and the complexity of medical terminology itself made it difficult for them to have effective communication with the medical personnel. Four of the participants in the current study had a similar experience. Aika thinks itâs because of her lack of fluency in English that she cannot figure out which information is more important and requires more attention, in line with findings from Hughes et al.âs (2002) where some of the participants expressed exasperation due to their lack of ability to communicate in English. 131 Millaâs visit with the doctor was also challenging, as she was told she needs to improve her English, which she believes was a cruel way to communicate while she is already under stress and during an intake meeting. This highlights the importance of keeping in mind at what stage and state of mind parents are when service providers are meeting them. Lee and Parkâs (2016) highlight language problems between families and professionals were noted by several of the families. In Kingâs (2011) study, parents admitted to agreeing to treatment decisions for their children that they did not feel comfortable with because they were unable to express their concerns or inquire about other treatment options. Similarly, participants in this study expressed confusion about the options they were offered and how they sometimes had to agree without being wholeheartedly on board with the decisions. Parents also experienced a lack of consistency between verbal and written information, as in Yunâs case. Milla brings up the issue of accent and states that even when they speak English, not everyone puts in the effort to understand what they intend to express. This is consistent with Woodgate et al. (2017) findings, where the participants feel, at times, it was challenging to fully communicate symptoms and understand the medical. Similarly, some of the parents in Sohn and Wangâs (2006) study stated how they are eager to stay in touch with the teacher, but the teacher doesnât understand the way they speak English, which leads to their frustration. In sum, Kan et al. (2016) emphasize the importance of customized interventions, particularly those that enhance family-centred communication and coordinated care, in addressing health disparities. This is a finding in the current study as well, considering how participants expressed frustration when they feel their accent is not understood, the mental state they are in when they are being informed of their choices, lack of knowledge of their options and 132 in some cases, their expectations not being fulfilled. This calls for a more focused, customized communication technique to enhance the experiences of families who are already overwhelmed. 5.3 Strengths and Limitations of the Study I chose a rather broad lens of special needs in general, as opposed to focusing on a specific condition, to get a more generalized perspective on navigation experiences of newcomer families. This can be looked at as both a strength and a limitation. Itâs a strength in the sense that the study resulted in the exploration of more general experiences of parents from different countries with children who have various special needs that can be applied to a larger demographic. However, a more focused study on a particular diagnosis or condition and families from particular countries or cultural backgrounds could lead to results that would be more tailored to that population. As all the participants spoke English fluently, I could not have an in-depth understanding of possible language barriers that newcomer parents may encounter. Studies with caregivers who do not speak English can highlight the possible language barriers these families go through and/or strengths of the Canadian system in terms of supporting them and providing them with interpretation services and resources, and how it impacts their perceptions and experiences. I was not able to recruit caregivers who identify as fathers, which could strengthen the diversity of outcomes, and their voices are missing from this study. 5.4 Directions for Future Research The current study was focused on a more general population of both newcomers and special needs to give the researcher a broader scope and to include more voices. However, future research can focus on a specific population from one ethnicity, newcomer group, or cultural group through a narrower lens to result in a more focused analysis of that specific population and 133 design more culturally targeted interventions to address the needs of the marginalized populations. Studies with a broader population may allow comparison of the experiences of Canadian caregivers and newcomer caregivers to find out where the system can improve to support both populations and what strengths each group bring to the community, and how these different populations can support each other in advocating for their children and navigating the system. Language encompasses culture, history, beliefs, and oneâs roots. A review of the literature showed that there are not many studies conducted around the language barriers families might face, and how that, in turn, impacts their decision-making and understanding of the processes. This could be because of the lack of resources and accurate, culturally relevant interpretation services, yet more studies need to focus on the issue of language in the context of newcomer families navigating services in their new context. 5.5 Conclusions This study aimed to do an in-depth exploration of the experiences of newcomer families who have children with special needs to give these families a platform to voice their journey, which will in turn lead the way for other families and inform practitioners and policymakers of their ways of exploring, strengths, and expectations to make this process more inclusive for everyone. There is very limited literature and research conducted in the context of Canada that is focused on this population, while considering the number of immigrants moving to Canada every year makes it a pressing matter. 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Yes ____ No____ Is your child diagnosed with special needs in Canada? Yes____ No____ Are you the primary caregiver of your child? Yes____ No____ Did you immigrate to Canada at least three years ago? Yes____ No____ Can you take part in conversations in English? Yes____ No____ Do you have a device that will allow you to take part in online interviews? Yes____ No____ 146 APPENDIX B Background Information Questionnaire Navigating Education System and Related Services: Experiences of Newcomer Parents of Children with Special Needs The following questions are designed to help gain a comprehensive understanding of each participant's background, including demographic details, childrenâs diagnosis and when they were diagnosed, which is crucial for interpreting the interview responses within the broader context of the participant's life and experiences. Having this knowledge can help tailor the interview questions and inquiries to each participantâs background. The goal is to describe the sample in research reports, helping other researchers and readers assess the transferability of the findings to other contexts or populations. Ethnic origin data and gender data will be used to help the researcher interpret how culture, traditions, and social expectations may or may not influence the person's responses and lived experiences 147 Questions about YOU What is your age? _________________________ What is your gender? _________________________ What is your ethnicity? _________________________ When did you move to Canada and how long have you lived in Canada? _________________________________________________________________________ How long did you live in your home country? _________________________ What languages do you speak? ____________________________________________ What is your current immigration status? __________________________________________ Canadian citizen ____ Permanent Resident ____ Protected Person ____ Questions about your CHILD How old is your child? _________________________ Are they your biological child? _________________________ What gender is your child? _________________________ What grade is your child in? _________________________ What is your childâs ethnicity? _________________________ 148 What country was your child born in? _________________________ If they were not born in Canada, how long did they live in their birth country? _________________________ How long have they lived in Canada? ________________________ What languages do they speak? ___________________________________ What is the primary language they speak? _________________________ What is the primary language you speak with your child? _________________________ When was your child diagnosed? _______________________________ What is your child diagnosed with? _______________________________ 149 APPENDIX C Interview Questions 1. Tell me about your family before moving to Canada. â¢ Where did you live? â¢ Did you plan to immigrate before or after your child was born? Why? 2. Tell me about the process of immigration. 3. Tell me more about your child, what are their interest and strengths? â¢ When was your child diagnosed first? â¢ What wasâ¦. Diagnosed with? â¢ What was your initial understanding of the diagnosis? â¢ How and when did you first notice your childâs disability? 4. Tell me about the services (help) your child with special needs gets, how do you know about them and accessing these services? 5. How and where did you first look for services (help) for your child with special needs? â¢ Who did you discuss it with first and what was their response? â¢ Describe any strategies you have used to navigate the healthcare system â¢ In your experience what are the strengths and weaknesses of special services are in Canada? â¢ What measures were taken for you in terms of language compatibility? (translated material, interpreter?) â¢ Availability of resources â¢ Funding 150 â¢ Delivery of services â¢ Communities or other helpful organizations or support system 6. Did cultural and/or language differences between you and service providers impact your experiences in terms of â¢ Assessment â¢ Paperwork â¢ Relationship with professionals â¢ Your comfort in communicating with service providers. â¢ Impact on other siblings â¢ Meetings (evaluation meetings, parent conferences) â¢ Relationship with other parents 7. How do you describe your connection to the following and how did it impact your experience: (Here Iâm looking to see how related the parent feels to the following) â¢ To the service providers and their suggestions â¢ To your childâs teacher and school personnel â¢ To the education system â¢ The policies related to special needs 8. How do you see your involvement in decisions made for your childâs treatment? In what ways do you feel involved in support provided for your child? (autonomy) 9. What factors support or hinder your ability to understand and navigate the support services provided for your child? (Competence) 10. If you could tell service providers how they could best work with you and your family what would you tell them? 151 APPENDIX D Consent Form Navigating Education System and Related Services: Experiences of Newcomer Parents of Children with Special Needs Principal Investigator: Laurie Ford, Ph.D. Department of Education, Counselling Psychology & Special Education Phone: XXX-XXX-XXXX Email: XXXXX@ubc.ca Student Co-Investigator: Fatemeh Arian Nejad, MA Department of Education, Early Childhood Education Phone: XXXXX-XXXX Email: XXXX@ubc.ca Dear Parents, Please read the following information carefully. This is a request for you to take part in the study that we are doing. If after reading this letter, you would like to take part in this research study, please sign one copy. Electronic signatures or initials are fine. Please email the forms to XXXXX@ubc.ca Please save a copy for your records. The Purpose: The purpose of this study is to better understand your experiences in navigating the healthcare and education system. Through understanding immigrant parentsâ experiences, we aim to offer suggestions for service providers to better communicate with immigrant families. Research Study Participation: Study Procedures: Taking part in this study means that you agree to participate in two interviews about your experience in the feedback meeting and hearing news of your childâs diagnosis. These interviews can take place in person or online through Zoom. The interview will be recorded via Zoom or an audio recorder (if the meeting is in person). You have the option of pausing the recording and restarting whenever you like. Each interview is expected to take 60-100 minutes, the total commitment time would be between 2-3 hours. During the Zoom Interview, you can log in using only a nickname or a substitute name or research code given ahead of time by the researcher, you can turn off your camera, and can mute your microphone when needed. The background information that will be collected refers to demographic data; we will be asking some questions about your family background in order to ensure inclusion criteria are met. The goal is to describe the sample in research reports, helping other researchers and readers assess the transferability of the findings to other contexts or populations. After the interview, the interviewer will remove all identifying information and transcribe the 152 session. Participation is voluntary and you can decline and withdraw from the study at any time during the study.If you agree to take part in the study, you will answer background questions including background information about yourself and your child. All the background information that you provide us is confidential and no participants will be identified by name in any reports about the study. The information collected will be stored in a secure and encrypted storage at the Universityâs cloud and in a locked storage at UBC. Compensation As a thank you for your time, each person who takes part in the study will receive a 20$ Amazon e-gift cards per interview and up to 40$ for the two interviews. You have the right to withdraw from the study at any time during data collection and you will be compensated. Potential risks and benefits The information collected will be stored in secure and encrypted storage in the Universityâs cloud. A spreadsheet that links the code to the identifying information along with the background questionnaires and the consent forms will be password protected and encrypted and saved on UBCâs OneDrive cloud, separate from the data. We are not aware of any risks if you take part in our study. However, if you feel uncomfortable, you may choose to stop at any time. If any of the questions in the interview make you feel uncomfortable, you may choose to skip those questions. You are welcome to contact us with any questions. Confidentiality Taking part in the study means that you agree to the information being used for the purpose of reporting the results of the research in Ms. Arian Nejadâs masterâs thesis and defence and future studies. This includes presentations with direct quotes with all identifying information removed. The findings (including the transcripts) may also be submitted in a journal publication to academic journals, including Open Access journals. Do you give consent for the future use of data? Yes x No Submitting to Open Access journals means that the data collected from this study (with no identifying information, such as names) may be made openly accessible to others. This is so that other researchers can use the data for future research studies. This de-identified data may be made available on an academic journal site. Please note that once this data is made available, you will not be able to withdraw your data because the data will be combined. If you agree to take part in the study, you also have the opportunity to give your feedback on the 153 findings. These findings will be emailed to you after the data has been analyzed. You can provide your feedback by email, phone, or Zoom. Questions for Complaints If you have any concerns or complaints about your rights as a research participant or your experiences while participating in this study, you may contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance email at RSIL@ors.ubc.ca or call toll free at 1-877-822-8598. I ___________have read the above information and agree to take part in this study. Signature ____ Date ____ 154 APPENDIX E List of Initial Codes (Open Codes) â¢ Acceptance phase â¢ Advocacy and self-education â¢ Assessment â¢ Canadian education system as less stressful â¢ Challenges of building a team â¢ Confusion after diagnosis â¢ Connection (to community/services) â¢ Coping mechanisms â¢ COVID-19 â¢ Cultural contrast â¢ Cultural shift â¢ Cultural vulnerability â¢ Difficulty finding services â¢ Effective communication â¢ Emotional overwhelm after diagnosis â¢ Emotional regulation â¢ Equitable distribution of funds and services â¢ Exploring immigration options â¢ Fear of not being perfect â¢ Feeling grateful â¢ Feeling trapped in the system â¢ Financial factors â¢ Financial stress â¢ Forward thinking â¢ Funding â¢ Future plans â¢ Future stress â¢ Impact of home environment on child well-being â¢ Impact of parentsâ well-being on children â¢ Information gap â¢ Involvement in educational decisions â¢ Involvement in health-related decisions â¢ Lack of a fixed routine â¢ Lack of choice (limited daycare options) â¢ Lack of individualized support 155 â¢ Lack of information â¢ Lack of transparency in healthcare services â¢ Language barrier (including accented speech) â¢ Limited access â¢ Means of communication â¢ Navigation challenges â¢ Navigation initiative â¢ Need to be heard â¢ Parentsâ expectations of experts â¢ Parentsâ initial reaction to diagnosis â¢ Parentsâ limited knowledge of child development â¢ Parents feeling supported â¢ Parentsâ problem-solving skills â¢ Parentsâ strength-based approach â¢ Parentsâ trauma and loneliness â¢ Peer support â¢ Policy â¢ Prior knowledge of child development â¢ Qualifying for financial support â¢ Resource navigation â¢ Role of community â¢ Self-trust in parenting â¢ Solutions to lack of transparency â¢ Support through parenthood â¢ Support system â¢ Taking initiative â¢ Therapists offering differing diagnoses â¢ Time is of the essence â¢ Trust in the healthcare system â¢ Waitlists 156 APPENDIX F
Thesis/Dissertation
eng
Early Childhood Education
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Ford, Laurie
Navigating education system and related services : experiences of newcomer parents of children with special needs
Text