What are the experiences of Korean American mothers of children with autism? Dr. Sunyoung Kim in the Department of Special Education at the University of Illinois at Chicago and her team (2020) conducted an interview study with five Korean American mothers who have a child with autism between the ages of 7 and 10 years. They found four main themes from the interviews.
1. Mothers found it challenging to search for and set up services due to emotional stress (e.g., “We first thought about setting up services quickly after his diagnosis. Then, depression came back and forth … each time it came, it was hard”), economic and social status constraints (e.g., “He couldn’t get benefits because he was not a U.S. citizen”), and linguistic barriers (e.g., “I have a lot of paperwork … it’s really stressful when it’s in English”).
2. Mothers discussed the impact of autism on the sibling relationship. One mother, Hana, said, “My first child can manage kids well. He loves my second child with autism … before the third one was born, they were best friends. He has great compassion … That helps children’s emotional development … having a second one with disability. Most kids don’t know that’s good for them educationally.” Another mother, Min-Ju, said, “Tina and Tina’s younger brother often fought … it is not a fight … Max couldn’t stand Tina’s behaviors. So I explained, Tina is special … Max seemed to understand a little bit.”
3. Mothers discussed the impact of autism on their personal lives. Mothers often expressed guilt by stating “I am not doing a good job as a mother”, “I push myself so hard”, and “I am getting through my life without being myself”. Mothers also explained a sense of social isolation when they said, “I cannot build a relationship” and “I feel isolated but I feel a sense of fruitfulness if I do a little thing for my kids”. As most mothers in this study immigrated to the U.S. in their adulthood, the findings show that culturally diverse mothers may benefit from additional social support to build meaningful connection, linguistic support (e.g., translation), emotional, and practical support (e.g., navigation through the system).
4. While most mothers reported satisfaction in their relationship with the teachers, they also reported low levels of expectation with the school services. One mother, Min-Ju, said, “It would be good if the school could do better and provide more services, but it’s okay since we receive therapy outside of school”. This could be due to the lack of opportunity to observe therapies within the school system, as described by Hana. Also, all mothers believed the duration or length of therapy at school was limited. Particularly, mothers desired for more opportunities for their children’s social skills development at school.
What is the main take away for us as LEND trainees? The findings align with previous research (Lee & Park, 2016; Park & Turnbull, 2001). Whether it is the language, culture, economic constraints, or lack of knowledge of the system, culturally diverse families may experience confusion, stress, and guilt as suggested by current research. More support to address language barriers, emotional well-being, and navigation through the system is clearly needed (Cho & Gannotti, 2005; Yan et al., 2017). In the context of education, Trainor (2010) highlighted the importance of home-school partnership in promoting learning and growth of the students. Regardless of the discipline, I believe that our efforts to facilitate and engage in family-professional partnership and culturally responsive practices will be critical in enhancing the family experiences.
In lay terms, I suggest that we, as practitioners, researchers, and leaders ...
1. actively take time to engage and build relationship with the family members
2. put families first and at the center of our practice, especially when we are having team meetings, setting goals, making decisions, evaluating progress, and even implementing intervention
3. use visuals or written materials for families to take home
4. provide a clearly summarized document rather than (or in addition to) a lengthy stack of paperwork
5. use translation apps, if possible, to translate some, if not all, parts of the materials
6. interact with families with “kindness and empathy”, as one parent said during a LEND family visit.
If you have other suggestions, concerns, or feedback, I would love to learn and hear from you.
I hope this blog post provided an opportunity for us to reflect on how we engage ourselves with families who may not speak English as their first language, frequently have questions, or at times seem confused or frustrated because they are not familiar with the system, the terminologies, or the service delivery process. Just as it applies to all parts of our lives, I am reminded today to have “kindness and empathy”. As Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
Image description: The left side of the image is Maya Angelou, an African American woman with short, curly, brown and gray hair, wearing a pair of large, gold hoop earrings, a gold necklace, and a brown, lacy top. The right side of the image is text stating, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. Maya Angelou”.
References
Cho, S. J., & Gannotti, M. E. (2005). Korean-American mothers’ perception of professional support in early intervention and special education programs. Journal of Policy and Practice in Intellectual Disabilities, 2(1), 1–9.
Kim, S., Kim, H., Kim, J., Nichols, S.C., & Kang, V.Y. (2020). Experiences and impact of having children with autism spectrum disorder on the lives of their Korean-American mothers.
Exceptionality. Advanced published online.
Lee, Y. J., & Park, H. J. (2016). Becoming a parent of a child with special needs: Perspectives from Korean mothers living in the United States. International Journal of Disability, Development and Education, 63, 593–607.
Park, J., & Turnbull, A. P. (2001). Cross-cultural competency and special education: Perceptions and experiences of Korean parents of children with special needs. Education and Training in Mental Retardation and Developmental
Disabilities, 36(2), 133–147.
Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47.
Yan, M., Kim, S., Kang, H., & Wilkerson, K. L. (2017). Perception of disability and special education among East Asian parents: U.S. immigrants and non-immigrants. Journal of International Special Needs Education, 20(1), 41–55.
