Written By: Julie Swaim
It’s truly an honor to be asked to help parents and grandparents who are on the journey with their child who is deaf or hard of hearing and is learning to listen and talk. For many, this is an unexpected journey – there is no history of deafness in their family and they have no one to turn to who can guide them on all of the steps they need to take to help their child understand and speak the language of their family. For that reason, Cochlear partnered with the Alexander Graham Bell Association for the Deaf and Hard of Hearing to establish the Listen-Learn-Link: Parent Support Line at AG Bell.
I’m also a parent who took this journey. Our son became deaf when he contracted meningitis before his first birthday. Grayson is now himself a father, a very successful information technology specialist, married to a lovely nurse. But when he lost his hearing, we had no idea what might be possible for him. We didn’t even know if he would learn to talk, do well in school or grow up to have a good job. We turned to friends of friends or colleagues who were deaf, and they shared their experiences, but where we learned what was possible was from AG Bell.
In AG Bell, we found a wealth of information about childhood hearing loss and we learned the steps we needed to take to help Grayson hear, talk and achieve his potential. We spoke with other parents and began to see that we could help our son reach for the stars. At the time cochlear implants had just been approved for children age 2 and up, and Grayson was too young, so we learned all there was to learn about hearing aids, but of course, they weren’t much help. For four years, we worked with an auditory-verbal therapist to help Grayson speak. Around that time, I received a magazine from AG Bell that featured a column written by a doctor who encouraged parents to make sure their child had frequent audiograms to understand their hearing levels. Grayson’s audiograms had varied so much over the years that I was moved to call the doctor’s office. Amazingly, Dr. Epstein himself answered the phone and told us we needed to take fast action, because over time, bone can grow in the cochlea. We quickly took him for an MRI and found that his left ear had ossified, but his right ear could still benefit from a cochlear implant – a few months later, Grayson’s implant was activated and he could process sound again.
Because of all I learned, I became an advocate for helping parents understand their choices and the very important steps they need to take so their child can communicate. I was able to take a position to help other parents in my state who were taking this journey, and now I provide that guidance through AG Bell’s Parent Support Line.
Cochlear stands behind AG Bell as the exclusive sponsor of the Parent Support Line. Through this vital service, parents can call me or send an email, and they’ll get a quick response to any question they may have. AG Bell has access to hundreds of professionals teaching children to listen and speak who know what it takes for children with hearing loss to learn language, become literate, and advance academically. AG Bell works with volunteers in 41 state chapters across the country, not just professionals but also adults who grew up with hearing loss and parents who understand how to work with a child’s hearing and speech team, how to navigate public services and the school system to provide your child with the best support possible, and how to enrich your child’s life so they can join in all the activities of your family and community.
The Parent Support Line isn’t just a question-and-answer resource, though. It also provides a wealth of video stories to help you learn from real experiences. We believe that the human touch makes all the difference to parents who are facing new challenges with their child, so we make every effort to connect with people. Resources and videos are in English and in Spanish, and since I speak both languages, I talk to families in either one.
The Parent Support Line ensures that you understand the options before you when choosing the communication method for your child, and when you choose Listening and Spoken Language, this program is the entryway to a whole system of knowledge and support.
I’m proud to serve families exploring the possibilities for their child to hear and speak. I hope that your family will turn to us for the most up-to-date, real-life information as you help your child grow from cradle to career and live a life without limits.
Contact Julie Swaim at 202-204-4680 or send an email with your questions to: ParentSupportLine@agbell.org.