How to talk to adults about your child’s hearing loss

Julia Watychowicz is a six-year-old girl who loves to play tennis and compete in Irish dance competitions. She also happens to have a severe hearing loss, a condition for which she wears hearing aids. Julia’s father, Mark, recently reached out to Healthy Hearing after reading our article on teaching kids about hearing aids and hearing loss.

“Being a dad of a six-year-old with hearing loss, would you consider writing an article from the opposite point of view?” he asked us. When we asked him why, he told us while Julia’s diagnosis “came out of nowhere," accepting her hearing loss wasn’t nearly as difficult as dealing with perceptions from family and friends.

“Most have been supportive, but some family members were not as accepting,” he said. “To this day, some still believe that she could be fixed by herbal remedies and magic potions by a witch doctor. Maybe I am exaggerating, but the notion that family feels the need to fix Julia, suggests that Julia is broken. Some even think that the hearing treatment will make her hearing worse.”                                           

Julia is part of the 14.9 percent of American children between the ages of 6 and 19 who have hearing loss. Julia’s hearing loss was detected by her preschool teacher who noticed she wasn’t always responding to her name when it was called. Shortly thereafter, she was fit with hearing aids – and her parents started fielding questions from other adults.

“A very common question would be, will she grow out of it? Is it permanent?” Mark said “There are many scientists and universities that offer the hope of a cure, but that is not an option right now. We can't sit around and wait for a cure. For children, there is a small window of opportunity for early intervention that will give them the tools they need to manage their hearing impairment in the best way that they can.”

Mark is right. According to the American Speech-Language-Hearing Association (ASHA), early intervention is the key to helping children like Julia keep pace with their peers when it comes to speech and language development. Untreated hearing loss affects children in four ways:

• It causes delays in speech and language development.
• The language deficit causes learning problems that affects academic achievement.
• Communication difficulties lead to social isolation and poor self esteem.
• It can ultimately impact vocational choices.

The Individuals with Disabilities Education Act (IDEA) ensures that children who are deaf or hard of hearing receive free intervention services throughout their school years. Although these intervention services help children with hearing loss keep pace academically with their normal hearing peers, the stigma associated with hearing loss can be frustrating for their parents.

“When people found out about Julia's hearing impairment, most felt sorry or sad for her,” Mark said, “but there is nothing to be feel sorry or sad about. Julia is a happy and healthy girl that has achieved amazing accomplishments. Not just accomplishments for a child with a severe hearing impairment, but accomplishments that are amazing for any first grader. Children are very capable of adapting when given the opportunity.”

Mark said it’s sometimes difficult to convince family and friends a child who is deaf or hard of hearing can accomplish the same things as a normal hearing child. “I feel that people have trouble understanding how someone with a hearing impairment could adapt to still live an amazing life in the mainstream world,” he said. “The explanation is simple: a disability is merely a state of mind. We all have disabilities that we have learned to manage. A child that is deaf or hard of hearing is no different.”

Mark’s advice to other parents of children who are deaf or hard of hearing is simple: be their advocate. He suggests using these statements when having conversations with other adults about your child’s hearing loss:

1. My child is not broken. He/she is a happy and healthy child that will rock this world one day.
2. You don't need to treat my child differently. Include my child in every conversation. There is only one simple rule: have proper speaking etiquette. When communicating, face your audience; don’t speak from a different room; don't speak over one another; and offer visual cues (we all like to speak with our hands sometimes, right?)
3. Don't feel sorry for my child.
4. Don't feel the need to fix my child. It is an amazing journey that parents go through with their child, and only the parent, their child and their treatment team will know what is best. 

“Having a hearing impairment just means your life has a detour, but you still could reach your goals at the end of your journey,” Mark said. “There are rock stars, politicians, movie stars and major league baseball players that have accomplished greatness while being treated for a hearing impairment. Just last year, a Super Bowl player, Derrick Coleman, played with hearing aids. With the right tools (technology), support, education, team and opportunity, a person with a hearing impairment could accomplish anything.”

Recently, Julia’s Irish dance team placed seventh in the Mid-America region – a significant accomplishment for such a young team. Her hearing aids allow her to hear the music and dance brilliantly; however, it’s her parents who’ve given her the confidence to chase her dreams, teaching her that her hearing loss does not define her.

“Not having the family's support can very discouraging, but as a parent, one of the most important roles is to give your child the opportunity to be all that he/she can be,” he said. “You can't let the discouragement overwhelm you.”