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Serving Families Who Have Adopted Children with Hearing Loss

Rosenzweig, Elizabeth A.; Smolen, Elaine R.; Hartman, Maria, PhD

doi: 10.1097/01.HJ.0000549523.71507.c5
Practice Brief

Left to right: Ms. Rosenzweig is an auditory verbal therapist and a PhD candidate at Teachers College, Columbia University, where Ms. Smolen is also a PhD candidate and an adjunct faculty member, and Dr. Hartman is a lecturer and the practicum director of the university's Deaf Education Program.

In fiscal year 2016, the U.S. government issued 5,372 immigrant visas for children adopted from other countries by parents living in the United States (U.S. DOS, 2016 http://bit.ly/2xMiOK5). That same year, 53,500 children were adopted domestically from the United States’ foster care system (Children's Bureau, 2016 http://bit.ly/2xMji2R). Due to changes in international adoption regulations and increases in domestic adoption, over 90 percent of international adoptions from top sending countries, such as China, are now of children classified as having “special needs” (U.S. DOS, 2015 http://bit.ly/2xPGU6K). Anecdotally, there is a community of parents who are interested in adopting children with hearing loss and/or already have, as evidenced by active social media groups such as “Deaf/HOH Adoption” or “Deaf Adoption Late Language Acquisition” on popular platforms such as Facebook or Yahoo listservs. However, our literature review using terms such as “deaf,” “hearing loss,” “hearing impaired,” and “hard of hearing” with the term “adopt” (adoption, adopting, adoptive, adopted) yielded no results. This study attempted to investigate the qualitative experiences, perspectives, challenges, and needs of parents who have adopted children with hearing loss, whether internationally or domestically, to better inform the practice of audiologists, speech-language pathologists, and deaf educators.

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METHOD

After receiving IRB approval from the Teachers College, Columbia University, families were recruited via social media and professional networks over an eight-month period. Forty-nine parents provided quantitative data regarding their children, such as age of adoption, degree of hearing loss, communication method(s) pre- and post-adoption, and use or non-use of hearing technology. Twenty-two of these parents completed semi-structured, one-hour qualitative interviews with members of the research team, and their responses were transcribed and coded for thematic analysis (Densin & Lincoln, Eds. Sage Publications, 2000; Qual Res Psychol. 2006; 3(2):77). All parents who participated in this study were mothers.

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RESULTS

Motivation: Parents reported a variety of motivations for adoption, ranging from infertility to viewing adoption as a humanitarian and/or religious calling. Some parents in the study had prior experience (personal and/or professional) with hearing loss, and thus specifically chose to adopt a child with hearing loss. Others were open to adopting a child with a special need(s) and were matched with a child with hearing loss by chance, while others adopted a child who they thought had normal hearing but was later diagnosed with hearing loss—in some cases, years post-adoption.

Hearing Loss Identification, Diagnosis: Many participants in the study reported receiving unclear, partial, or incorrect information about their child's hearing loss from the sending country, orphanage, and/or foster care system. In our study, the vast majority of children who were adopted internationally did not have access to hearing technology or any (re)habilitative services in their home countries. In contrast, children adopted through the U.S. foster care system often received hearing care services through IDEA Part C (early intervention) or Part B (school-based services for children 3 to 21 years old), though these were often inconsistent due to multiple foster care placements. Parents reported a variety of reactions to their child's hearing loss diagnosis, ranging from relief (as they had feared that the child's lack of social responses and language meant that the child had autism or intellectual disabilities) to grief (over the diagnosis itself, the time lost pre-identification, or both).

Technology and Communication Decisions: Social networks, whether in-person or virtual, played a key role in many participants’ decisions regarding communication and technology options for their children. Contact with adults with hearing loss, other families with children who are deaf or hard of hearing, and hearing health professionals influenced the choices of many families. Parents who had prior professional experience with hearing loss often found their strongly-held opinions changing in light of their new child's needs. In particular, one parent who was an ASL interpreter chose to pursue a listening and spoken language outcome for her daughter, noting, “It's one thing to work with the d/Deaf, it's a whole other thing for that to be your child.” Common challenges identified by parents in our study included children coming home to the United States past the point of eligibility for home-based early intervention, dealing with professionals with expertise in hearing loss or adoption but not both, and sorting out the possible influences of first language (L1) exposure. Other difficulties included early auditory/language deprivation that leads to disturbance in English language and/or ASL development.

Social-Emotional Aspects: Regardless of the specifics of each participant's adoption experience (e.g., a child's age at adoption, degree/type of hearing loss, country of origin, type of adoption, etc.), all interviewees expressed that the social-emotional aspects of both adopting and parenting a child with hearing loss had the greatest impact on their families. Regardless of the parents’ prior personal and/or professional experience with hearing loss, the reality of parenting a child with hearing loss often proved challenging. Many of the children in this study had disabilities in addition to hearing loss and, as one parent noted, these children have additional needs due to their traumatic beginnings in life. Other sources of stress for parents included getting insensitive reactions from family, friends, and/or medical professionals. Despite these challenges, the mothers interviewed were purposeful, determined, and unwavering in addressing their children's needs.

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IMPLICATIONS FOR PRACTICE

English Language Learners: While some children adopted internationally may have had little to no L1 exposure due to the severe/profound nature of their hearing loss, others, such as those with mild-to-moderate or unilateral hearing loss, have had some L1 exposure and perhaps developed some level of receptive and expressive L1 language skills before their adoption into presumably English-speaking families in the United States. The American Speech-Language Hearing Association provides an online list of resources and evidence-informed best practices for serving this population, but it should be noted that these studies have largely been conducted on populations of children with typical hearing (http://bit.ly/2xMsVP3).

Positive Adoption Language: Numerous participants in the study reported negative interactions with medical and educational professionals who were unaware of or insensitive to their child's adoption status. As communication disorders professionals, we understand the power of language but may feel ill-equipped to deal compassionately and respectfully with these patients and their families. While the specifics of what is called “Positive Adoption Language” in the field are beyond the scope of this article, a more comprehensive list can be found at http://bit.ly/2xP6jgZ.

Routine Screenings: A baseline hearing and speech/language screening should be considered standard procedure for all children who have been adopted. Children may have experienced early medical neglect, allowing conditions like chronic otitis media to progress into permanent hearing loss. Alternatively, articulation and/or language issues in a child adopted internationally may be written off as effects of second-language learning, masking the presence of a true hearing loss.

Trauma-Informed Care: Children who have experienced such a profound disruption in their early attachment experience the consequences on biological and psychological levels, regardless of how early they were adopted, the quality of their pre-adoption care, or the warmth of their new family. As Purvis, Cross, and Sunshine (2007) noted in the invaluable book, The Connected Child, “Deprivation and harm suffered early in life impact all the ways that a child develops, including the development of cognitive and communicative skills.” Family-centered care is undoubtedly the best practice for all children and families, but it takes on special importance in these unique cases.

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