As technology improves and early diagnosis and interventions for infants are more available, it may be easy to lose sight of the fact that despite all the progress being made in audiology, families are still “rocked” when they learn that their baby has significant hearing loss. For many parents, any information shared about “how far audiology has come” is lost, because they often don't hear anything beyond these words: “Your child has hearing loss.” But in their journey of raising a child with hearing loss, parents develop a certain level of expertise and offer unique insights that would be useful to hearing professionals.
Meet Whitney Bynum and Kris Hopper. Whitney, a mother of three, has a 7-year-old daughter with bilateral cochlear implants, and Kris, a mother of two, has an adult daughter who used bilateral hearing aids and later received cochlear implants at 15, then at 21 years old. While parents and professionals may take different approaches to managing hearing loss, both share a commitment to hearing-impaired children. In the spirit of collaborative care, here are some thoughts from Whitney and Kris on what parents want and need from hearing health professionals.
1. Partnership. Pediatric audiologists and Listening and Spoken Language (LSL) Specialists have the knowledge, experience, education—and thus power. But for parents who are all too aware of their lack of the needed knowledge, the situation can be intimidating, especially in the early days of treatment. When professionals recognize our valuable knowledge of our children, as well as our commitment and sensitivity, the balance of power shifts and a partnership is established. When professionals invite feedback, we are empowered to do what needs to be done. We get to share our unique strengths and learn together, from which our children benefit. After a diagnosis of hearing loss, some parents may resent the power held by professionals. They may discount the words and guidance offered by professionals because they haven't come to terms with the diagnosis and they don't want the words spoken to be true. Some may even be angry with professionals who delivered the words that will become such a big part of their lives—“hearing loss.” But as we fight through the shock and muck of our child's diagnosis and as the partnership with professionals grows, we will draw strength in the knowledge that you shared with us along the way and in the power that you gave us at a time when we felt completely powerless.
2. Passion. As parents facing the new reality of our children's hearing loss, it is important to know that we are working with hearing health professionals who are passionate about what they do—that providing the best hearing care is more than a paycheck for them; it is truly their passion. While professionals may not walk in our shoes and we may never fully understand how an ABR works, we can share in your passion. It gives us a skip in our step to know that we are surrounded by those walking passionately alongside us and not trudging reluctantly. When providers love their work, we feel it and so do our children.
3. Patience. Audiologists and other related specialists spent years learning and developing their expertise. It is your chosen professional path. But as parents, we didn't choose this road; the fact is, it chose us. We wouldn't choose to become experts in keeping hearing aids on or getting earmolds into a wiggling baby's ears on the first try, but we will get there if you are patient with us. When professionals offer parents some patience, they are giving a gift to families. And when professionals take the first step in modeling patience, there is a greater chance for parents to also find grace and patience, thereby strengthening the partnership.
4. Practice. Parents need many practice opportunities—and being offered some patience helps us master the necessary skills faster. Simple words of encouragement also remind us that we are on this road together and that, as parents, we are not being graded on our performance.
5. Plain and simple. Many parents may not appreciate the technical jargon and mounds of information involved in a hearing loss diagnosis. We need to understand hearing loss in terms that make sense. It is important to explain results and tests in ways that we understand, and use real-life examples to explain what my child does or does not hear (i.e., “without his hearing aids on, he only hears the roar of an engine”). Don't overload parents with too much information, particularly early in the process when we are still dealing with the diagnosis. Provide information in writing and make sure we know where to go for further information when we need it. Also, If there are no definitive answers to our questions, please tell us. An honest response like “I don't know, but we will figure this out together” goes a long way in building the trust needed for a strong partnership. Don't sugarcoat information. We need the brutal facts shared with kindness so that we can make the best decision for our child. Finally, repetitions and clarifications are absolutely necessary.
6. Proactive. As distinguished expert Carol Flexer, PhD, repeatedly said: “No family asks for a professional's best opinion from the year 2000; instead, they want to know what the best opinion is today in October of 2017.” Proactive professionals who stay updated and constantly improve their skills empower parents to make the best decisions. Parents put more trust in a partnership with professionals who provide them with the latest information available. With new research and technology, recommendations change, sometimes quite dramatically. In the late 90’s, many families were told to keep technology off the non-implanted ear as it might interfere with the CI signal. Today, families are being coached differently because of the recent knowledge on how the brain, ears, and technology work together. When professionals proactively stay on top of developments, families can rest, knowing that there are people who are working to make sure their child has the best auditory access.
7. Personable and Personal. It is comforting when professionals use our children's names during appointments. It's also more personal and reassuring when professionals call parents by their names. There might be a time when parents would want to have comparative knowledge about other children being treated for hearing loss, but at the onset, we want to know what hearing loss means for our child. We want to set the bar high for our children, not as compared with other hearing-impaired children. When the provider introduces our child to other professionals or observers at an appointment, it is more personal to hear “Abby listens with two cochlear implants,” instead of “She's a bilateral cochlear implant user.” Although it seems redundant to even speak of the need for a “child-first” language in the pediatric medical setting, it is always respectful to describe a child as “Max, a child who is deaf” instead of “Max is a deaf child.” Hearing loss does not define our children. And as we will spend many hours with professionals, taking the time to get to know our family or mapping appointments helps all of us feel important. Knowing what games and activities motivate our children helps calm our fears as we face another long mapping session with an active toddler. Being silly, offering high-fives, bubbles, or a special trip to the candy machine are certainly going to make it easier to motivate them during the next booth appointment, therapy session, and appointments after that.
8. Prepared and present. Always be prepared for our appointments. Families feel supported when they know that their providers have read the reports prior to an appointment and when they ask for feedback. For our therapy and audiology sessions, if an activity isn't working, be prepared to make changes to keep our children engaged. Ask parents before using any type of food as a reinforcement and, if instructed, we can bring our child's favorite toys, food, or an iPad to support your efforts in a mapping or therapy session. Tell us what to practice on at home and we will get it done. Our partnership is strengthened when we are all prepared. It may seem rather trite to mention, but both families and professionals need to put phones away during sessions. There may be exemptions, but we all need to commit to being fully present. Also, parents want to know that all professionals involved are also communicating with each other and sharing information that will benefit our child. And later, when our child enters school, we want our hearing health professionals to communicate with our child's teachers as well.
9. Positive. Your words of affirmation about our children are very powerful. When we get discouraged and overwhelmed—like when we see our child in the audiology booth unable to hear anything—getting encouraging words from a professional can be uplifting. Even if there is difficult news, starting the conversation with something positive is a gift. If my child's cries can be heard throughout the clinic because she is unwilling to remove her implants for testing, saying something positive could bring comfort to a parent's weary heart and body. Point out some progress, even when it might be a stretch. Your words of affirmation for parents are also very powerful. We always worry if we are doing what it takes to grow as a listener, and on some days, we may only have enough strength to get to an appointment on time. Your affirmation can be a lifeline that gives us energy to face another week.
10. Perseverance. One of the greatest gifts that professionals can give families is their ability to persevere. When we see you hang in there with us to make sure that our children will be able to listen and talk, you inspire us to persevere. Knowing that our team is in it for the long haul is comforting, especially when we watch many of our friends and families move away when they find our road to be too difficult. Your willingness to set the bar high, your belief that our goals for our children are possible, and your tenacity to find ways is a model that stands in sharp contrast to the experiences shared by many families who are told again and again about what doesn't work, what their children can't do, and how unrealistic their goals are for their children. We want persevering partners in our journey. Who knew that our children who are profoundly deaf would become the best listeners in their class? Who knew we could confidently share our stories with other parents who are just starting their journey? You did, time and time again. You persevered and we are forever grateful.
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