Reaching Out: How to Connect with Other Families of Children with Hearing Loss

by Krystyann Krywko, Ed.D

When our son was diagnosed with late onset hearing loss six years ago, shortly after his third birthday, it was the fear of the unknown that we were most worried about. The familiar guideposts we had followed with our daughter were now gone. We didn’t know any children or adults with hearing loss. We didn’t know if our son would eventually be able to communicate with us. All we knew was that he had moderate to severe bilateral sensorineural hearing loss and that he would need to wear hearing aids. Other than that, we were clueless when we left the audiologist’s office.

KC.Krystyann Krywko.Three children in Reaching Out articleThis state of not knowing is difficult for a parent to be in. You feel that you are supposed to be the one in charge, and you are supposed to be the one that protects and watches out for your child. How can you do this if you are not even sure of the challenges that your child will face? 

It can be isolating when your child is first diagnosed with hearing loss. “You go through your pregnancy with a group of friends, or you attend an infant and toddler group at the same time as your friends. Then you get this diagnosis and all of the stuff your kids had in common, you suddenly don’t have anymore,” said Christina Danese, mother of Jack who wears bilateral cochlear implants. “It’s not that way intentionally, but all of a sudden some of the people you know are not sure how to act around you and they slowly drop out of your lives.”

Why Connections Are Important

What has been amazing about our son’s hearing loss journey is the way we have been included and accepted in a community of parents who are also striving to find out what works best for their child. 

Social and group support plays a crucial role in a parent’s ability to cope with their child’s hearing loss diagnosis. Increased social support is shown to have a positive effect on stress in families of children with disabilities, specifically those of children who have hearing loss (Lederberg & Golbach, 2002). 

“Connecting in person was vital to my family’s sanity,” said Tina Morris, mother of Karsen who has bilateral cochlear implants, and founder of a Facebook support group. “My immediate family was very supportive and always had open arms when I needed a hug, but they could not relate to the roller coaster ride we were on. I had two children, one with extra needs, and a husband in the military who deployed for six months at a time. Connecting allowed me to talk about experiences, share what we were learning, compare notes, and just vent. You can learn so much when you listen to others walking on the same path.” 

The social resources available to families come from both natural and artificial networks. Natural networks are made up of relatives, friends and acquaintances, whereas artificial networks refer to new contacts with other parents in a similar situation such as within a parent group as well as with professionals (Hintermair, 2006). As parents move through the different stages of raising a child with hearing loss there is a reliance on both natural and artificial networks at different times.

“When people are uneducated or unsure about hearing loss they don't know what to say or do,” said Eileen Solla-Diaz, mother of MJ who wears bilateral cochlear implants. “No one in our family really understood what we were going through but they tried to be there for us. Our new hearing loss family helped us the most. They are the ones that I continue to turn to for advice as my son gets older.” 

Making connections in our lives is probably the single easiest way to enhance our emotional and social wellbeing. This is because what makes us human is our sociality, our desire for and focus on social connections, loving relationships and meaningful interactions with others (Carter, 2015).

How the Need for Support Changes over Time

The support a family receives, especially around the time of diagnosis, significantly impacts parental acceptance of the diagnosis, as well as parents’ feelings towards other services, communication methods and the hearing loss community (Koester & Meadow-Orlans, 1990). 

KC.Krystyann Krywko.Giraffe in Reaching Out articleBecause of the many appointments and therapy sessions in the early years when a child is first diagnosed professionals and health care providers are often perceived as a support network, rather than family or friends (Lederberg & Golbach, 2002). The Family Needs Assessment, conducted by AG Bell in 2013 reinforces the idea of how a single professional can make a difference in the life of a family. Many parents reported that a “single individual or organization often made the difference between feeling lost and feeling on track.”

The Family Needs Assessment also found that the availability of emotional, counseling and support resources in the local area varied widely. Only two-thirds of respondents chose to use these resources if they were available to them at the time and 62 percent of those who used services rated them favorably. Even when local support services were available, many parents noted

that in the early years they often felt overwhelmed with the amount of time required to provide adequate support to their child, and the effort required to connect with support groups was a barrier. 

However, for many families, the support they seek can become more difficult to find when their child ages out of early intervention or preschool program. As children enter mainstream programs, it can become more difficult to find ways to connect with other families and children with hearing loss. Yet, this is the time when families often need understanding and support the most. Families are in a constant state of change as family members grow older and challenges become more complex. Both children and parents find themselves in need of different levels of support. 

There are many ways that you can begin to connect with families who are also raising children with hearing loss and begin to build the social support that you need.

Conferences

Conferences are not just for hearing loss professionals. Parents also attend so that they can meet other parents of children with hearing loss, connect with hearing loss professionals, and keep up to date on the latest developments in education, therapy and technology. Some conferences are more focused on professional development, rather than parent networking, so just make sure you know what you are looking for before you register. 

Conferences can consist of large multi-day events held by national organizations, such as AG Bell, Hearing Loss Association of America (HLAA), Hands and Voices, and the Early Hearing Detection and Intervention (EHDI) meeting. Local chapters of these larger organizations also hold smaller one-day conference events that are held throughout the year. Take a look at chapter websites for your state to see what might be offered locally. 

Many conferences, such as the biennial AG Bell Convention and the annual Clarke Schools for Hearing and Speech Mainstream Conference, have strong family components where children and/or teenagers are immersed in activities while the parents attend various educational workshops and network with other parents. AG Bell chapters host one-day workshops that balance educational content with plenty of opportunity for networking and social interaction.

Support Groups

Support groups often become the one place where parents feel they can be understood. A support group can be one that is created formally and hosted by a school, an audiologist or other professional, or an organization. 

KC.Krystyann Krywko.Family in Reaching Out article“The support I received from the groups I joined was amazing,” said Ms. Solla-Diaz. “I immediately joined AG Bell and HLAA, and enrolled my child in a program focused on listening and spoken language. The manufacturer of my son’s cochlear implant put me in touch with parents through their network. Meeting this community of parents, children, adults and speech therapists gave us the courage and strength to move forward more positively. We started to understand hearing loss and realized that it's not the end of the world. Our son will hear and speak. He will grow healthy and be successful in school. That was my goal. To get MJ to start kindergarten on time! And that he did!”

Support groups also can be informal where a group of parents meet for coffee after school drop-off once a week, or a monthly play group get-together. 

“The support group that helped me the most began when I took the initiative to walk across the parking lot at my son’s listening and spoken language school and talk with the parents of the older students,” Morris said. “It was truly then that I realized the value of the parent-to-parent relationship. It wasn’t anything that was organized, but I learned more in those hours of speaking to ‘seasoned’ parents than any website, workshop, doctor, therapist or book could have taught me.” 

“The connections we have with other parents help so much. No one understands what it’s like to have children with hearing loss better than them. It has been wonderful to have so many parents who understand the issues that come up in school and with coaches,” said Karen Gintoli, mother of four children (three of whom have bilateral hearing loss and wear hearing aids).

Online and Social Media Opportunities

Distance can be a challenge for many families of children with hearing loss. In many instances families live in rural areas and there is little opportunity to find local support, or they might be the only child in an urban school district that has hearing loss. Thankfully, there are numerous technological advances that can help parents and children initiate and maintain connections across the miles. Google+ Hangouts and Skype calls can help parents and children stay in touch with therapists, friends and mentors. 

As your child grows older, they can begin to keep in touch with other children they may have met through Facebook, Instagram, email or texting. “There is such a bond that your child develops when they meet other children with hearing loss, it’s hard to put into words,” Gintoli said. “Some of my children’s best friends are the ones they met at the American Hearing Impaired Hockey Association (AHIHA) summer camp. They might only see them once or twice a year but texting and social media help them to stay in touch and to offer support to each other.” 

Organizations, such as AG Bell, also offer long-distance support in the form of their Facebook group, which provides a safe place for parents to connect and learn about listening and spoken language options. “My son was born in 2004 with a mild hearing loss, then lost his hearing at 14 months and received cochlear implants at 16 months and 2½ years,” said Samantha Elliott-Kennell. “We wanted spoken language for our son. I love AG Bell because of the research articles that are released about hearing loss and spoken language. I have connected with a few great families through AG Bell, as we all have similar goals for our children.”

Despite all the benefits of connecting long distance, Morris, founder of the Facebook group “Parents and Caregivers of Children with Cochlear Implants,” offers a word of caution. “After seeing many other groups become battlegrounds for communication choices and a lot of misinformation being shared, I decided I wanted to start a group that focused on quality information. I encourage new parents to do their own research and/or find a small support group of parents/mentors and take those conversations offline and work on forming relationships.” 

Summer Camps

There are many summer camp opportunities for your child, but there is something special when your child connects with other children with hearing loss. “One of the best things about our camp,” said Dana Selznick, an itinerant teacher of the deaf and co-founder of CampedUP in New York City, “is that it provides an environment where the kids don’t need to teach staff or other campers about their hearing loss. It allows them to have the chance to just enjoy camp worry-free.”

KC.Krystyann Krywko.Sleeping Bag in Reaching Out articleThere are a variety of summer programs that cater to children and families with hearing loss. Some, like the AHIHA summer hockey camp, provide opportunities for children with hearing loss to connect with others while playing a sport they love. Others like the AG Bell Leadership Opportunities for Teens (LOFT) program and Clarke Schools' Summer Adventure combine leadership and academic enrichment with traditional camp activities. Still others like the Hands and Voices Family Summer Camp in California, and the biennial North East Cochlear Implant Convention provide opportunities for the entire family to spend time connecting with other families for part of the summer. 

Attending summer camp after a recent diagnosis can also be an important step in adjusting to your child’s hearing loss. “We are contacted by many families that have children who are newly diagnosed,” Selznick said. “These families are seeking a summer program that will give their child a chance to gain confidence and pride in their hearing loss.”

These are just some of the ways that you can connect with other parents and families. When I look back at all the parenting connections I have made over the years, I know that I am stronger and have been enriched by having others that understand my family and my child. 

The benefits of connecting with others will not only have an impact on you as a parent, but these opportunities can also bring a sense of empowerment and belonging to you and your child. “I had no connections with other children like myself,” said Gintoli, “I was a shy child and never felt comfortable talking about my hearing loss. Once my daughter was diagnosed with hearing loss, I knew right away that I did not want her to have the same isolating experience, so we looked for opportunities for her to tell other children about her hearing loss, show off her hearing aids and meet other children.” 

And that is all we really want for us and for our child, a place to belong. 

References
Alexander Graham Bell Association for the Deaf and Hard of Hearing (2013). Family needs assessment: Successes and challenges, listening to their voices. Washington, DC: author.

Carter, C. (2015). The sweet spot: How to find your groove at home and work. New York: Random House.

Hintermair, M. (2006). Parental resources, parental stress, and socioemotional development of deaf and hard of hearing children. Journal of Deaf Studies and Deaf Education, 11(4), 493-513.

Koester, L., & Meadow-Orlans, K. (1990). Parenting a deaf child: Stress, strength, and support. In D. Koester and K. Meadow-Orlans (Eds.), Educational and developmental aspects of deafness (pp. 299-320). Washington, DC: Gallaudet University Press.

Lederberg, A., & Golbach, T. (2002). Parenting stress and social support in hearing mothers in deaf and hard of hearing children: A longitudinal study. Journal of Deaf Studies and Deaf Education, 7, 330-345. 

Krystyann Krywko, Ed.D., is an award-winning education writer and researcher, specializing in hearing loss and how it affects children and families. Both she and her son were diagnosed with hearing loss one year apart. She loves to engage with parents and educators in order to dispel misunderstandings about hearing loss and to focus on the strengths of children who are deaf and hard of hearing. She is the founder of Kids with Hearing Loss (www.kidswithhearingloss.org)—an initiative to provide families a place from where they can move forward with strength.

Source: Volta Voices (2015), Volume 22, Issue 2