Unilateral Loss and Family Support
A GBYS Yahoo Groups
by Sara Kennedy
Recently, our Guide By Your Side listserv was ablaze with questions and answers flying across country borders on the topic of how to support families raising children with unilateral hearing loss. Despite many recent conferences on the topic (such as the 2005 national workshop referenced at the end of this article) families may still be faced with responses such as “He still has one good ear; he’ll do fine,” and “She has such a mild loss; I wouldn’t worry about it.” when their babies and toddlers are diagnosed. Those children, when diagnosed, are often not eligible for early intervention programs and thus they and their families can miss out on the “I” of the EHDI system – intervention and its emphasis on parent to parent support and ongoing education.
“Because of the “Oh, it’s not that bad” attitude surrounding unilateral hearing loss,” says Ginger Mullin, Au.D., UIC-DSCC EHDI Coordinator, “children have not always received the help they need, even if that help would have been consultative in nature. After years of advocacy, we have recently been able to get Part C in Illinois to recognize unilateral hearing loss as one of the medically eligible conditions. State data suggesting that a third of all infants identified with hearing loss and reported to the state have a unilateral loss helped drive the change in policy.”
Chresta Brinkman, a Colorado H&V Parent Guide and mother of a child with unilateral loss in Colorado, reflects, “Imagine parents learning that their child with UHL has delays that someone should have brought to the parent’s attention... delays that could have been addressed, and possibly prevented when they were initially diagnosed at an earlier age.”
“While some of the families of children with unilateral hearing loss do not need many or any services from Part C, at least the families are eligible and the risk of delay is explained to them in more detail, and families are empowered in the knowledge about development, language, and access to information,” Mullin continues. “It is very important for families to connect with Parent Guides, who can connect families with resources, help them know what to watch for, the interventions/services that may be available, and that they can reconnect with H &V during preschool age years or later when problems may arise.”
What should these families know?
Families can be apprised of the risks of UHL on later language development and thus be proactive in providing for learning as well as being educated observers of their child’s growth. A statistically significant number of children with unilateral hearing loss progress to bilateral loss. 30% of children with unilateral loss eventually have enough of a language delay that they require special education supports. Families benefit from understanding this “at risk” status and the critical part they play in careful observation of a growing child. Regular visits to an audiologist, who specializes in children, to monitor hearing in both ears is important. Families should understand their baby’s hearing loss and know how to observe hearing in order to notice changes at home. Going back in to the pediatric audiologist sooner rather than later is important during a child’s critical period for language growth (birth to seven years of age).
Teresa Kazemir, Parent Coordinator of the Hands & Voices Guide By Your Side Program, part of the BC Early Hearing Program in British Columbia, notes that parents often identify with the “real life” stories about the challenges of unilateral hearing loss. For example, difficulty localizing sounds means that hide and seek is a little tricky, and special care needs to be taken in traffic situations. Difficulty listening in noise means that having the television on in the background makes it harder to hear, and it’s important to get eye contact before giving instructions at birthday parties. Brinkman calls these two challenges the 2 L’s: Localizing sounds and listening in noisy situations (trying to listen to conversation against the background noise of television or music in a restaurant, for example) and notes that families can benefit from learning more about these listening situations. Families can also learn about protecting residual hearing through information about ototoxic medications, ear protection, and the careful observation of illnesses and ear infections. Even an ear infection in the “good ear” can have a temporary but scary impact on overall hearing.
Kazemir elaborates on the topic of hearing conservation: “On a recent family outing, I became aware of how little the general public knows about protecting hearing loss. We were at an airshow, and it was very loud. We were all plugging and covering our ears as the planes flew by (and wishing we hadn’t forgotten the ear plugs at home!), I looked up and saw this dad walking by carrying a young baby, maybe a month old, and the baby’s ears were totally uncovered.” All of us are at risk for noise induced hearing loss and children with UHL are not exempt.
Families need to be connected to Parent Guides as both Kazemir and Mullin noted above, and with parent organizations that offer information and support now or in future, from websites to events as a long term resource during a child’s growth and development. “While professionals can and do certainly address many of these issues, it comes across differently from a Parent Guide,” says Kazemir. A Guide with specialized knowledge, training and experience with unilateral loss can reinforce the information already received from professionals and be a role model for parents who are new to the field of hearing loss and the importance of understanding its effect on their own child’s development.
“Challenges often do not seem apparent to families until the school years when the listening conditions increase in difficulty,” says Mullin. Complex listening environments mean that teachers and teams need more information about hearing loss as a child progresses in school – from registering for preschool or kindergarten, to the changes of middle and high school. For children who do not qualify for special education protections, a 504 Plan is a legal protection in place for school age children to ensure that accommodations such as reduced noise in the listening environment and preferential seating are included in a child’s educational plan.
The child can be instructed over time to take a proactive stance in choosing where to position themselves in any given listening situation and how to tell others about his/her hearing loss. Learning to understand their hearing loss and how to advocate on their own behalf is a lifetime skill that will help them be successful in any future occupation and relationships with others.
Ali Rollins, an Illinois parent of a child with a unilateral loss and another child who is profoundly deaf, reflects: “I learned about the research that showed kids with unilateral loss tend to start to fall behind around 3rd or 4th grade. I, too, have often heard the phrase countless times ‘wait to see how he does and if he starts to have a problem, we will address it then.’ That phrase has NEVER been good enough for me. Why would I wait until he falls behind? I want him to stay AHEAD of the game or at least be on target. I feel that it is important for the “system” to recognize that having a unilateral loss is a significant issue and that it should automatically qualify a child for early intervention. I feel that if this were the case, then the school systems would also learn to recognize the significance of a unilateral loss and hopefully be more understanding to the child’s needs.”
While Rollins has a degree in deaf education and is married to a deaf man, she emphasizes that it doesn’t matter how much knowledge a person might seem to have related to hearing loss; when it’s their own child, it’s still just as scary and overwhelming and the parent still needs support from the very beginning. ~
Editor’s note: The GBYS Yahoo group is a member only site. Contact your GBYS coordinator for access. For the conference proceedings mentioned in the article, see the website at www.cdc.gov/ncbddd/ehdi/documents/unilateralhl/