Why Meet a DHH Guide?

By Pam Farley, Texas H&V
Guide By Your Side Program D/HH Guide

As parents, we all want to believe we know what is best for our child. We tend to declare ourselves “experts” when it comes to understanding our children as individuals. When our child is born differently-abled, we train ourselves through crash courses to advocate for them. Therein, we discover our limitations. We may become uncomfortable with the realization we may not be able to completely identify with our child after all. In desperation, we seek out ways to better educate ourselves on just what is going on with our child, but in reality, who is really the best teacher of such information? The child! This becomes problematic when the age or worldview of a son or daughter factors into the equation. For some children, what we perceive as their “disability” is a non-issue to them. For other children, they may feel frustration and notice some differences between themselves and their peers, but be unable to share that needs and information in a clear, concise way that enables parents, caregivers, and educators to help find solutions for them. So what is a parent to do?

Many parents look to Deaf or Hard-of-Hearing adults to illuminate how to best adapt family life around a child with hearing loss. The Hands & Voices Guide By Your Side program offers a great resource through their Deaf and Hard-of-Hearing Guides. These individuals are unique in that they have walked in shoes similar to the child’s and have the reflection, education, and ability to put into words what a child otherwise cannot. For example, a parent and a teacher may agree that the best location for Josiah in the classroom is in the front row, yet both are puzzled that Josiah still does not grasp the concepts taught in the classroom. Josiah may not notice, but a DHH guide may see that the fan that blows close to Josiah’s desk and the ensuing background noise interferes with his ability to comprehend the lesson clearly. Or maybe at home, little Sydney is constantly screaming and pulling off her cochlear implant processors. Her parents may assume she just hates the devices and feel frazzled fighting with her over wearing them. The audiologist may assume that volume is the culprit and adjust it, getting nowhere in resolving the issue. (Some audiologists might also assume that the parents just aren’t trying hard enough, leading to frustration all around.) A DHH guide with CIs may inquire about the noise factor in Sydney’s environment, explaining that the brain can sometimes become over-stimulated, something only an individual who has “been there, done that” would understand on such a level. Another guide might notice that Sydney wears the processors better if she can put them on herself, having some control in her environment.

DHH guides bring valuable insight into understanding a child with hearing loss. They are better able to put into words possible perspectives the child may have in how they hear with assistive devices, or what silence is really like. The DHH guide is usually someone who has successfully maneuvered through the education maze, is competitively employed, and has sought specific training in addition to thinking through their own life experiences in order to reach out to families.   In contrast to mixed messages a family might receive from their usual circles, DHH guides embody for parents a hope for the future that their child can accomplish anything they set their minds to achieve. DHH guides have connections to others with a variety of backgrounds, educational settings, and career paths, coming to parents with a treasure trove of lifestories that will assist parents in getting to the “everything will be all right” phase with their child after all. Many parents appreciate the opportunity to interact with an adult who understands what they’re feeling and assures them that life from their child’s point of view is still considered “normal.”  

In my personal experience as a DHH guide, I considered it a blessing to meet this one couple with a deaf one-year-old son. They were grieving over their child’s hearing loss, having never met another person with deafness before. After chatting about the beautiful day, their travel to the event we were attending, and the joys of parenting in general, the dad became very serious and asked me, “What is it like to grow up different from your peers? How do you handle being made fun of?” I looked at the dad and replied, “You tell me what it’s like to be different from your peers. You ARE different, are you not? And how does any other person in America handle teasing?” Tears began to stream for both parents, as the mom said, “So, in essence, my son is normal, like any other child in America?”

I have had the opportunity to remind parents that their children who are Deaf or Hard-of-hearing are first and foremost individuals with common interests and abilities that any other child may possess. They are not defined by their hearing ability or lack of it; rather, they have the potential to define for the world what it means to be a child with slightly different communication needs who succeeds in everything expected, and more. One of the biggest factors in being able to influence others is having credibility, and what is more credible than someone who understands the perspective of your child simply because they have been measured similarly in their own life? The world is full of amazing individuals who have overcome adversity and achieved success and we tend to seek them out for inspiration, collaboration, and for insight as to how our child can follow a similar path. Finding those connections can be difficult without access to a group like Hands & Voices, particularly for wide diversity among those who don’t hear well by medical standards.  Hands & Voices provides a way to take that first step and to get connected through their provision of their unique, successful individuals referred to as Deaf and Hard of Hearing Guides.

The value of DHH guides goes beyond assistance with navigating the audiology maze. They can serve as a voice for the child, an example of a successful outcome, a pillar of strength for a grieving parent, a living library for questions like “What do you use for a fire alarm?”, a resource-finder for paths leading to goals parents have set for their child, and even a special newfound friend for those who need them. They serve to remind people of life in general, sans communication struggles, hearing loss, and rebellious moments. Parents usually walk into the relationship audiology-minded, but are soon, with the help of a DHH guide, experiencing life as everyone else experiences it – as individuals collaborating with others in a meaningful society.

Coming Soon!

A new pilot project is being developed by H&V Headquarters to increase opportunities for families being served by GBYS programs across our chapters to meet with D/HH Guides via a web-based accessible support forum.  The program will be released early in 2013.

For more information about the H&V Guide By Your Side Program, contact Lisa Kovacs at gbys@handsandvoices.org

For more information about the H&V Video Guide Pilot project, contact Karen Putz at karen@karenputz.com