Stuck in the Middle – One Family’s Journey
By Marissa Weiss, California H&V
During a conversation with our daughter’s teacher of the deaf (TOD) in second grade, this invaluable professional accurately summarized the challenges of Rosie’s journey as a hard of hearing kiddo. She noted that Rosie “just doesn’t fit anywhere”. This theme has repeated itself time and again. Here are a few examples:
As a baby with moderate to severe hearing loss in her left ear (fitted with a hearing aid at 3 months) and “typical” hearing in her right ear, we were not offered family sign language instruction as part of our early intervention services because she wasn’t “deaf enough” for ASL. She had EVA, or enlarged vestibular aqueduct, known to contribute to progressive hearing loss. We were able to advocate successfully for the addition of family sign language education.
When transitioning from early intervention to preschool and starting an IEP, Rosie’s eligibility was classified as Speech/Language instead of Deaf/Hard of Hearing, again due to not being “deaf enough”. We hired an educational advocate and were able to change her designation to Deaf/Hard of Hearing and add a Teacher of the Deaf to her IEP.
When her hearing loss progressed at age five to moderate-severe in her right ear and profound in her left due to EVA, she was fitted for a right hearing aid and eventually implanted in her left ear at age six. Noting that she was doing well academically but seemed to struggle to read social cues and connect with peers, we started exploring options other than a mainstream school experience. We toured multiple, wonderful Schools of the Deaf, but our daughter strongly identified as Hard of Hearing and wasn’t sure if a School of the Deaf was right for her.
While Rosie generally enjoyed visiting the Schools of the Deaf – especially seeing other kids with hearing aids and implants – she would always comment that she’s a “talker”, so the Deaf schools weren’t a good fit. She wanted to also be around friends who weren’t Deaf or Hard of Hearing. Despite Rosie’s general preference for “talking”, i.e. oral English, we knew that exposure to ASL and Deaf and Hard of Hearing peers could only help, even if she didn’t want to immerse herself in the signing community. It’s been hard as a parent as I’ve taken a bunch of ASL classes and try to encourage Rosie to attend Deaf events and sign with me, but she is not enthusiastic and usually asks me to “just talk”. We try to be patient and follow her lead, knowing that she is in the early stages of developing her identity.
Acknowledging that a School of the Deaf was not the plan and Rosie would be staying in the mainstream setting, our TOD suggested that we add an ASL interpreter to her IEP for fourth grade. Even though she wasn’t fluent in ASL, the interpreter would help her fluency and ensure that she didn’t miss anything. I can’t say enough about the importance of a quality, intentional Teacher of the Deaf. I doubt the school district would have approved our request for an interpreter without significant advocacy, but they went along with the TOD’s recommendation.
We had high hopes for fourth grade, believing that the interpreting service would help Rosie thrive. While the interpreter definitely helped Rosie, this addition couldn’t overcome the lack of a Deaf and Hard of Hearing (DHH)-friendly culture at the school. After an incident in which Rosie was sternly reprimanded for a playground issue caused by missing a social cue, her new Teacher of the Deaf called an IEP meeting and strongly recommended that Rosie move to the county’s DHH program. The Teacher of the Deaf was amazing, sharing with us that Rosie’s needs would probably never adequately be served at a school that didn’t understand the needs of DHH students. While Rosie was a strong student academically, she would likely continue to face barriers.
Moving to the county program was a tough decision. The program is housed in a neighboring town a bus ride away and separated her from her younger sister, who attended the same school. Many friends didn’t really understand why we would move Rosie; they thought she always seemed happy and did well in school. While that was true–Rosie is a generally easy-going, happy girl—our friends didn’t see the stomach aches she reported when she was unable to express her sadness and frustration from feeling left out (missing cues to move onto the next activity due to oral announcements, difficulty participating in games that focused on the use of sound and listening), or how much we had to advocate to get the school to allow Rosie to sit at a quieter table with a small group of friends at lunch, so she could interact with peers instead of sitting alone in the noise and talking to herself. We ultimately decided to move her the following academic year to give her the chance to thrive in a school that was equipped to understand her unique needs.
And thrive she has! I can’t say enough wonderful things about the Yolo County Deaf and Hard of Hearing Program in Woodland, California! It truly is the best of both worlds. Rosie enjoys a critical mass of DHH students in each grade, interpreters in each classroom, and educators who are used to working with DHH students. The TOD even came to Rosie’s parent-teacher conference, which had never happened before. Both the TOD and classroom teacher gave numerous examples of Rosie’s strengths and recommended that we consider enrolling her in the gifted and talented program, which was never suggested at her previous school. We also now have the smoothest IEP meetings, which I never thought was possible! I used to dread IEP meetings and felt like I had to be the content expert educating the team about the needs of DHH students, but the meetings with the Yolo County DHH Program are a pleasure – they even recommended adding speech back into her IEP after the previous school wanted to eliminate those services. The only downside is that we don’t know families in Woodland so it’s harder to arrange playdates, but hopefully that will change with time. We’re proud to report that she is one of the top students in her class and has joined the student council.
Rosie will still have many life experiences in which she may not fit in easily, but the Yolo County DHH Program is a place that gets as close as we can to an appreciation of Rosie as a Hard of Hearing/predominantly oral/ASL-learning kiddo. Our main sadness is that the program only goes until sixth grade. I’ve tried researching middle school DHH programs in any state. I would love to find a middle school for a child who not quite this or that… a hard of hearing, mostly oral, ASL-learning student. We would move to attend a great program, but it’s hard to find real recommendations in the frequently changing world of Deaf education. I would love any suggestions from readers for programs to consider! ~
Editor’s note: Contact the author at mweiss@cahandsandvoices.org
H&V Communicator – Spring 2025