Taking the first step.
Strategies, Experiences, and Reflections
By Anna Karkovska McGlew
As a parent, looking back at the time you received your child’s diagnosis of hearing loss, you might recall feeling confused and overwhelmed. These first days of trying to make sense of your child’s hearing loss were probably emotionally difficult and searching. You likely needed and wanted time out in order to process this new information, yet the realization that time is of the essence and that your decisions will impact the course of your child’s life, propelled you to act and kept you going. Looking back, you wish you knew then that it was all going to work out just fine.
Volta Voices recently sat down with a group of parents of children with hearing loss for a roundtable discussion. Four parents from all corners of the United States reflected on their family’s journey with hearing loss—from hearing screening and diagnosis through choosing listening and spoken language as a communication option to navigating the school, intervention and hospital systems, and doing their absolute best to ensure their children have every opportunity to thrive and succeed in life. The participants shared their experiences and provided their tips and strategies in the hopes that their stories will be useful to parents of newly identified children with hearing loss and give them comfort and reassurance. The roundtable included parents of very young children as well as parents whose children are in already in college. Most of the younger children have bilateral cochlear implants and the older children received their bilateral cochlear implants in their early teens. Read what these parents have to say. We would love to hear from you and your family! Please share your story with the AG Bell community on our Facebook group.
Meet the Panelists
Choosing a Communication Option
Receiving the Diagnosis
Build a Team and Ask Questions
Connect and Advocate
More Tips and Strategies
Meet the Panelists
Barbara Mellert, from New Hampshire, mother of Thom, 20, and Sam, 18, both with profound hearing loss and with bilateral cochlear implants. Both sons have attended mainstream schools and were often the only kids with hearing loss in their school. Both received their bilateral cochlear implants as young teens. Thom is currently a sophomore at Hampshire College in Amherst, Mass., majoring in theater. Sam has been accepted at a number of colleges and dreams of being a cochlear implant surgeon one day. Barbara is a classically trained organist and has been married to her husband Hugh, the “rock of Gibraltar,” for 34 years.
Lisa Clayton, from Alabama, mother of Ella Marie, 3, and twin daughters, Isabella and Sophia, 19 months old. All three are profoundly deaf and wear bilateral cochlear implants. The children have been confirmed with the Connexin 26 gene through genetic testing, which can cause hearing loss. Ella Marie attends regular preschool and receives weekly auditory-verbal therapy sessions. She enjoys gymnastics. Isabella and Sophia receive individualized auditory-verbal therapy one time a week. When Lisa and her husband, Ryan, are at work, the twins go to a home daycare in order to continue developing language with peers. Lisa is an assistant professor in the Department of Elementary Education at the University of North Alabama. Her husband is an Enterprise Account Executive.
Michelle Sy, from California, mother of Lucas, 4, who has profound hearing loss in both ears and wears bilateral cochlear implants. Lucas is also identified with autism spectrum disorder. He attends the Center for Early Intervention on Deafness in Berkeley in the mornings and follows a PRT/ABA (Pivotal Response Treatment/Applied Behavioral Analysis) plan in the afternoons, working on safety, social, transition and other goals. Michelle is a stay-at-home mom and recently graduated from the University of Phoenix. Her husband, Noah Punsalan, is vice president in business banking.
Staci Coddington, from Texas, mother of Reagan Grace, 7, who has sensorineural hearing loss—profound in her right ear and moderate in her left. Reagan Grace wears a cochlear implant in her right ear. She has a brother, 9-year old K.J., who has typical hearing. Both kids attend Founders Classical Academy, a charter school in Texas with classical curriculum. Reagan is in the first grade and is one of the top performers in her class. KJ plays football, baseball, and basketball and Reagan swims and plays soccer and basketball. Staci is a stay-at-home mom, chauffer, nurse, therapist, church and school volunteer. She is married to Kyle, who is in product development and marketing for a medical device company.
Choosing a Communication Option
For some families whose children were identified later, the choice to communicate through listening and spoken language was a natural outgrowth of their children’s communication development. For other parents, it was a choice made after researching all options.
Barbara: She joked that her sons were diagnosed “back in the dark ages” in the mid-1990s. The older son, Thom, the “trailblazer” for all things hearing loss in their small community in New Hampshire, was doing so well using listening and spoken language that he had to be re-tested to confirm the degree of his hearing loss. After he was fitted with hearing aids and did quite well, they tested Sam, his younger brother by two years, who was also diagnosed with profound hearing loss. At the time, the two brothers were the only kids with hearing loss in their community in west central New Hampshire and were already communicating using listening and spoken language prior to their hearing loss diagnosis. Barbara recalls, “It followed kind of naturally that they would listen and speak.”
Staci: Reagan Grace did not have an auditory brainstem response (ABR) test to identify hearing loss until she was almost 3 years old, which revealed that she had a profound loss in her right ear and a moderate loss in her left. She already had been using spoken language and even her speech-language pathologist couldn’t believe the degree of hearing loss. “It was kind of a whirlwind because all this was new information. We considered all options and resolved to immerse her in as much listening and spoken language as possible in case her loss was progressive. We took every opportunity to maximize exposure to spoken language.”
Lisa: Ella Marie, Lisa’s 3-year-old daughter, did not pass her newborn hearing screening test, which led to her diagnosis of profound hearing loss shortly after that. Lisa recalls her ENT/ cochlear implant surgeon from Children’s of Alabama “did a great job of educating us about not only [her] hearing loss but also what our options would be.” He, along with their listening and spoken language specialists, made sure that she and her husband were educated on all of the communication approaches. The Lisas received Choices in Deafness: A Parents' Guide to Communication Options (Schwartz, 2007). Being from a small town in Alabama, where there were few children or adults with hearing loss, the family did research on their own and traveled around to find any information they could. In the end, they chose listening and spoken language and Ella Marie started receiving auditory-verbal therapy.
Michelle: Lucas was diagnosed early on after he did not pass his newborn hearing screening in California. He was fitted with hearing aids at 4 months old, but as he was getting no benefit from them, the family decided to move on to cochlear implants prior to his first birthday. The family received information on all communication options from Children’s Hospital. Michelle and her husband wanted Lucas to be able to sign and speak, because they understood that “cochlear implants were not an answer to his hearing loss but a means for him to hear.” Michelle continues, “We wanted to give him every opportunity possible.”
Receiving the Diagnosis
All parents recalled the uneasy time between their children not passing the hearing screening test and the concrete diagnosis of hearing loss. As Staci put it, “Once you have the diagnosis, you can run with it—find out all the options available, start making decisions, take action.”
Lisa's family had no history of hearing loss. She and her husband decided to go to a geneticist at the recommendation of their ENT, which showed that Ella Marie’s hearing loss was due to Connexin 26, a variation in the GJB2 gene. Subsequently, her twin daughters were also confirmed with Connexin 26. Both husband and wife were carriers of that gene, which meant that each of their children had 25 percent chance of having hearing loss. Lisa felt that knowing why her daughters had hearing loss was the piece of the puzzle that helped her spring into action: “It set me on the path to start this journey and start researching everything I could find out to help my children become successful.”
Build a Team and Ask Questions
Roundtable participants shared their experiences and strategies for navigating the early intervention system and how they went about finding information on listening and spoken language options in their community.
Staci: The family decided to “double up on everything” for Reagan. They assembled a team of professionals for Reagan both from the school district system in Florida—where the family lived at the time prior to moving to Texas—and the children’s hospital in their area. Through the school district, Reagan had a teacher of the deaf, a speech-language pathologist, and an audiologist. Through the hospital system, she received audiology and auditory-verbal therapy. Staci developed several signature questions for Reagan’s clinicians and asked them over and over again: “If this was your child, what would be your next step? What questions am I not asking? What would you be doing at this stage?” She also made sure that she coordinated between the clinicians in the school system and the ones in the hospital system: “I was the go-between there, the coordinator.” Staci also emphasized the importance of finding a certified auditory-verbal therapist, a professional who understands deafness and can notice minute changes in a child’s language development.
Lisa: As soon as Ella Marie, Isabella, and Sophia were each diagnosed with a profound hearing loss, they immediately began receiving early intervention services with a listening and spoken language specialist. The Lisas’ ENT/cochlear implant surgeon, audiologist, and listening and spoken language specialist from Children’s of Alabama provided information about listening and spoken language to their family. Although these services were two and a half hours away, Lisa felt that this was the right choice for her children. The Claytons also got in touch with families that they knew had gone through the process of receiving a cochlear implant and auditory-verbal therapy. The parents looked for information everywhere they could think of. They utilized their family connections in Memphis, Tenn. Every time they went on a family visit, they took the children to the Memphis Oral School for the Deaf and received services there as well. Lisa concludes, “As a parent, you have to build a team around you of experts and professionals who can help give you the information you need. It is so important that the professionals working with your children have experience with your child’s communication approach, cochlear implants, and understand the background of how you got to where you are.”
Michelle: At first, the family received services from both the early intervention and children’s hospital systems. After her son, Lucas, was diagnosed with autism spectrum disorder at 2 years and 6 months, Michelle and her husband felt that the local school district no longer understood the family’s approach and their choice for listening and spoken language for Lucas. The family decided to move to Berkeley, Calif., where the unified school district had the services the couple felt that Lucas and the family as a whole needed. Michelle says, “We wanted him to have every chance, and we wanted him to be part of both the deaf and the hearing worlds.” Michelle’s experience led her to realize that a parent must advocate for and be able to articulate their vision for their child. She recommended taking the AG Bell Parent Advocacy Training course, available at no cost through the Listening and Spoken Language Center website.
Barbara: The family’s remote area in New Hampshire did not have an auditory-verbal therapist. Luckily, there were local speech-language pathologists who had experience working with children with hearing loss. The local school system, where Thom and Sam were enrolled, also paid for them to receive a comprehensive education evaluation from the Clarke School for Hearing and Speech in Pennsylvania. The Mellerts labeled everything in their house and read extensively to their sons. Barbara said that being chatty paid off in the end. One family friend joked that Barbara and her husband provided the boys with a language-rich environment. “That was a nice way to be told—you talk a lot.”
Connect and Advocate
Participants said that building connections with other families of children who are deaf and hard of hearing as well as professionals was a crucial part of their support network. Being able to talk to and befriend other families living with hearing loss provided them with indispensable information, shared knowledge, and moral strength.
Barbara: At first, Barbara felt isolated. Her sons were the only kids with hearing loss in their school and there wasn’t a community of other families with children who were deaf and hard of hearing. The Barbaras started going to the conferences organized by the Clarke School for Hearing and Speech. “I felt like my brain expanded every time I went,” she recalls. Technology helped too. Barbara contributes to and moderates the Listen-Up listserv, which connected her with other families on the same journey and helped her heal emotionally. She and her husband got involved on the state level in New Hampshire and are currently the parent members of the newborn hearing screening task force. With the help of her audiologist, Barbara advocated successfully to her insurance company to approve hearing aids for her sons as medically necessary. Barbara concluded, “Educating ourselves helped an awful lot emotionally. I also found David Luterman’s books to be extremely helpful.”
Staci: After the family moved to Texas from Florida, her new ENT recommended a cochlear implant for Reagan. This new opportunity led Staci to research and connect virtually with other families on the same path through the Listen-Up listserv and CI Circle. “Parents’ willingness to share with other parents was a great resource. It is so inspiring to simply log in and be able to receive or give encouragement.” Staci and her husband were also profoundly changed after attending the AG Bell Convention last summer. It was, Staci said, a “huge resource—the standard of care, the professionals invited to speak there and their level of expectation for our children—it was a life-changing experience.”
Lisa: An early intervention service coordinator notified the family that beginning on a specified date, their children would no longer receive the services that they were receiving at the time. This decision was made without an IFSP meeting. The family knew that there should not be any predetermined decisions being made about the services that the children would or would not receive without the entire IFSP team, which includes the parents being part of the discussion. Fortunately after the team as a whole convened, it agreed that the needed services would in fact stay in place.
Lisa emphasizes the importance of making one’s voice heard. Her background in teaching helped her a lot. She educated herself even further on IDEA (the Individuals with Disabilities Education Act) and made sure that she advocated on behalf of her children from a place of knowledge and deep understanding of the law. Lisa states, “You have to be able to state why your child needs the services that you are advocating for. You need to know why what you are asking for is appropriate for your child.” She credits the AG Bell Listening and Spoken Language website as a “phenomenal” resource for advocacy and information.
Michelle: “Talk to parents. There is nothing more comforting than knowing you are not alone. Seek support groups. Get to know your local, state, and federal agencies. And ask the professionals—they are an invaluable resource.” She cautioned against obsessive online research and advised taking some things with a grain of salt.
At the end, all parents agreed with Lisa when she said, “As a parent, you have to understand your child’s hearing loss and know that your child can be successful just like any other child.”
More Tips and Strategies
Roundtable table participants shared their suggestions for other families. Here is what they had to say:
Michelle: “Give your child lots of verbal reinforcement. Although progress may be slow, celebrate everything. Tailor the information you receive to how it will help you. Take a moment to soak it all in. And don’t forget to take care of yourself, because this is the best way you can care for your child.”
Barbara: “Every day is a success. Surround yourself with communities of supportive parents and supportive kids. Make friends with other families who have kids with hearing loss. Educate yourself on the laws and the accommodations: know why you need what you need. Finally, give your children every opportunity to advocate for themselves—it is so much more meaningful.”
Staci: “Children talk like they hear, so don’t always accept that a speech issue is age appropriate, but do suspect that it may be technology related. Just know that no one knows your child better than you do and you are their best advocate. The special education Michellestem is designed to remedy issues, instead of preventing them, which is what our kids [with hearing loss] need.”
Lisa: “We celebrate things we can hear. One of our favorite things to do is turn on music in the house and just dance—the kids love it. Every toy or every object in your house can be a tool for developing listening and spoken language. Let your child be a child, but also look at what’s coming next and keep your child’s momentum going. Set high expectations for your child and believe that she/he can reach them.”
List of References Cited by Roundtable Participants
Luterman, D. (1987). Deafness in the Family. Dallas, TX: Pro-Ed.
Luterman, D. & Ross, M. (1991). When Your Child Is Deaf: A Guide for Parents. Baltimore, MD: York Pr.
Luterman, D., Kurtzer-White, E., & Seewald, R. (1999). The Young Deaf Child. Baltimore, MD: York Pr.
Schwartz, S. (2007). Choices in Deafness: A Parents' Guide to Communication Options. Bethesda, MD: Woodbine House.
Source: Volta Voices, May June 2013